If you have just found out you have a urethral stricture, you will probably want to find out as much as you can about what to do about it, and what is in store. I know I did. When you go through something painful and unfamiliar, you want to find answers. You want to know if the things you experience are normal, or what is causing it, or how long it will last. You want to find out about ways to make things easier, more comfortable or less painful.
When I started this site, I was having trouble getting answers from the web. It turns out that urethral strictures and urethroplasty are quite uncommon. My surgeon told me that even within the field of urology, specialists in strictures are rare – about 1 urologist in 15 or 20. So I was going to have to go through it, find answers as I go, scour the web for experiences of others and clinical data so that I could provide as many answers and help as possible to others who are just beginning their own stricture journey.
I had my urethroplasty (the main treatment for repair of urethral strictures) surgery 12 days ago (see My Urethroplasty Is Done!) and I’ve been searching for answers again. This time my new experiences are the post-surgical things (mostly pain I didn’t expect) that I was unprepared for.
Again, I went looking for answers and the best ones came from other guys who had also recently had urethroplasty. Some of them came to me by commenting on posts – thanks Neil, Josh, Chris and Ray! But neither of them had the same pain I had. Fortunately, I found a forum thread where several guys reported having the same pain I was having (not to put too fine a point on it, but scrotal and testicular pain was the issue). It really put me at ease, since before I found that thread, I was doing the whole self-diagnosing thing that made me think I had some awful infection or worse. Now I know it is almost certainly an expected and much less worrisome effect of the surgical process. That is a serious relief!
I will, of course, ask my doctor when I see him for my follow-up/catheter removal/voiding cystourethrogram (VCUG) on Friday, 5 days from now. I like to have good data before believing it and passing it along. And I will do that next Friday. But if you would like to visit that forum thread I was talking about now, check out this link: https://www.medhelp.org/posts/Urology/Recently-had-a-Urethroplasty-done/show/1680722
Hey Ken,
I just got home from my VCUG. Wow! I can’t believe how quick it was (compared to the surgery of course). I hope you have a great test on Friday! The freedom of being “tube-free” is so great!
All the best to you on the test and for the next phase of recovery.
Chris
Thanks Chris. You’re getting me all excited (phrasing…..yeah, I know;)) about Friday! I have read elsewhere that it was “unpleasant.” Apparently I have a low threshold for pain, so I’ll go in assuming the worst and hoping for the best.
Such great news that you are tube-free and everything. Do you mind my asking how long your ordeal was from start to this point? I would say “start-to-finish,” but we know there is still some healing to be done. Though my low-flow and pain started about a year before my initial catheterization and diagnosis of stricture (instead of the “benign prostatic hyperplasia” dx I had the entire previous year) occurred on Feb 8th, 2013. They told me I needed 3 months of bladder-rest before they could schedule the “up/down-o-gram,” as they called it (technically an antegrade/retrograde urethrography). Then the extra time after that until they could schedule the urethroplasty. Today is exactly 2 weeks since the surgery, making total time elapsed just shy of 6 months.
Congrats again and good luck!
Ken
Ken,
Thanks so much. I am wishing you all the best for Friday!
I have been living with a stricture (strictures) for about 27 years. I went to the Lahey Clinic on the recommendation of the Urological group in my home city after a very revealing retrograde urethrogram done in May 2013 (I had a terrible UTI in February 2013 that got me moving with more urgency). I then met with Dr. Vanni in June 2013. Bombed my uriflow test! They had a July 5th surgery cancellation which I jumped on to get. The tube was in for a total of 23 days, out on Monday, July 29th. And I am now in the next phase of recovery and loving being able to pee normally after 27 years of dribble. Still am on lifting restriction (difficult with a 25lbs one year old son), no intercourse for about 3 more weeks, and finishing my last pill of Cipro today.
I am soon going to post my whole story here for people to use, if they feel the need to.
Again, all the best to you on Friday. If your doc is like mine, you will do great.
Thanks so much,
C
Thanks Chris! So 23 days with the catheter, but a long long time with the stricture. I wonder, then, why they were so insistent on a 3-month “bladder rest” in my case. My assisting surgeon told me that it had to do with making sure of the extent of the scarring in the urethra by letting the blockage and the area upstream from it “scar down.” which it cannot do properly if the bladder is constantly pushing pee over/through it. I guess every case is going to be a bit different.
Thanks again!
Ken
Ken,
Yeah. When I read that in your post I was wondering the same thing. You are right, it is a very case by case situation. I have been noticing that too.
Thanks,
C
I had same issue. They say you need 3 months for the scarring to stop/get in place. I had my surgery on the 89th day (just 3 days ago).
Hi Chris ,
I hope all is well and u r doing great now ..
My husband will go through a cystoscopy in a week and either he will undergo a urethroplasty surgery immediately or he shall wait for a month and a half b4 the surgery ..
I need to ask u about the pain degree (cheek and the whole surgery area) and the swelling too , living with a catheter for a whole month from the penis (is it painful or what) sitting and sleeping and eating and everything. . I’m so worried especially that we have two kids and I don’t know how to help him overcome the pain and all this process..
However thank u for sharing ur story and hope to hear from u any soon.
Regards,
Marwa
I’m 17 days post op, and I have two weeks to go before I get the catheter removed. My stricture was from a rappelling accident many years ago, and I was too stubborn to get it repaired until I had nearly complete blockage. My scarring was extensive and they took a graft from the mucosa in my cheek. That was probably the worst so far as intense pain goes. The cath is a constant dull ache I would say. I’m interested to know what people’s longer term outcomes have been.
Hi Jeff. Congrats on finally getting the surgery. Yeah, the issue with the buccal graft being the most irritating and painful is pretty common. I think that will eventually heal up as normal though (I was lucky enough not to have that). But to answer your question about long-term outcomes for the stricture repair – I can tell you that mine is still “fixed.” that is to say my peeing is normal – just like it always was before the stricture. No problems there. And the numbers are with you in the aggregate, urethroplasty being a 90%+ successful surgery long-term.
Would be interested to hear back from you once you’re catheter free! Best of luck!
ken, i just had the urethroplasty with the mouth tissue , my scrotum
is swolen, and my mouth is tender, how long will this continue?
Hi Mike. There should be little to no pain by the 6th day, according to this: http://onlinelibrary.wiley.com/store/10.1111/j.1464-410X.2004.05048.x/asset/j.1464-410X.2004.05048.x.pdf;jsessionid=E78E01D6DAC8DBFE9C81EDCEF989AC9A.f04t02?v=1&t=j9kn2e1j&s=f0773ac95c813647306aafeae1dacd414db549a6 Some people report cessation of pain earlier than that.
hi ,thanks ken, one more thing, did you get some bleeding from the upper incision near the head of the penis,? they said it was normal, i go in tomorrow to see the doctor, i have a bunch of questions, i;m kind of curious by nature, i suppose if i tore some stitches it would bleed real bad ,
thank you
Hi Mike,
I didn’t have an incision on or near the penis. Everything was done through the perineum. Sorry I can’t be more helpful on that. If you haven’t already, write your questions down before going to the the doctor tomorrow to make sure you get them all answered. I always seemed to forget something if it wasn’t written down. Best of luck tomorrow. I hope things are progressing in the right direction!
hi ken, i had the cathetor out and for about 5 days i peed pretty well then it slowed down and my scrotum swelled up, i went into the ER and they called the urologist in, they reinstated the use of the suprapubic cathetor for a while, however after a few days my scrotum is swelling again, i sure hope its not leaking piss into my scrotum?
Wow, Mike. Didn’t the urology folks give you a reason why it was happening when they put the SP tube back in? If they didn’t, that’s a problem. I highly recommend you get a diagnosis/reason for what’s going on with the swelling in the scrotum. There is absolutely no way I can give any other advice than to make absolutely sure you have a doctor tell you WHAT is happening and WHY. I recommend calling, or better yet – physically going to your urology clinic and telling them this is happening and you NEED to know why as soon as possible. I did this a couple of times for issues I was having when I didn’t know why, and if you’re standing right there, it is usually more likely you’ll be seen that day. Good luck on getting that taken care of!
Hi Ken/All
It’s been about 2.5 years since my urethroplasty. I had the Bucal graft.
Ive now got a lot of urgency to go to the bathroom and sometimes struggle to hold on. Does anyone know if it is common and could it be a symptom of the original issue … potential sign of reoccurrence?
Appreciate your help
Rhys
Rhys – I’m sorry to hear that. this is one of those times you should definitely ask your doctor/urology folks. there is really no other way to know. I don’t remember how old you are, but it COULD possibly be unrelated – as in potential prostate enlargement or other issue. but the only way to know for sure is to have it checked out by the pros. Best of luck! Can you report back here when you know?
Hi Ken, Thank you for this forum! I had my end to end urethroplasty in 2014 December, unfortunately the stricture recurred and l didn’t really notice until l started suspecting my flow. This year my suspicion was confirmed. I have a restricture. I had a urethrotomy 5 weeks ago but seems as if it has added discomforts such as urethral dull irritation feeling. The Uro said there were 3 very very short strictures at the anastomosis site but unfortunately one was dense. I may be headed for another urethroplasty, this time possibly graft technique.
I am in a great depression specifically because l have no one to discuss with about this. It seems as if l am the only one in the world with this condition. I am in my early 30s now. I trust you can help me and possibly link me with other peers
So sorry to hear this. and please forgive the late reply! I was recovering from surgery (not uro related) for the month of March. Anyway, I hope your 2nd urethroplasty works better. With the graft, it should. Best of luck with it! Did you have it yet? Or is it scheduled?
Hi, Thanks for creating this forum Ken it’s good to know you are not alone when it comes to urethral stricture and have people you can speak too, I have also had an issue with urethral stricture, I have had one from around 2010 I knew my flow wasn’t great had some occasion of not being able to urinate so eventually went and seen a urologist after a cystoscopy it was confirmed I had a 2cm stricture had a urethrotomy in 2015 but stricture came back in 2017 i could not urinate at all I had to go to A&E and by chance there was an available theatre where they repeated the urethrotomy again a few months later symptoms returned I was then advised of a urethroplasty for my 2cm bulbar stricture I had this done in June 2018 using a graft from my cheek, worked well for first year and a half but symptoms have now returned, I went for another retrograde urethrogram where it shows stricture is back I am waiting for a further appointment to discuss what options are available weather it will be another urethroplasty, as much as it’s not a nice operation I would rather have to have another one than end up living with a catheter for the rest of my like as I am only 34 years old.
Wow! First, sorry for the delay in reply. Second – wow! You are among a small percentage of people for whom urethroplasty didn’t work. I’m sorry you have to go through another one! At least you’re young :-). I was 49 when I had mine. Bet of luck that this next one works permanently. Thanks for posting!
I wanted to share my story here because, like Ken, before my surgery I wanted to know all could about what I was going to go through. I will try to be as concise and to the point as I can. Thank you, Ken for putting this website together. I hope that our experiences can help others that are living with this disease.
In the fall of 1986 I was admitted to the hospital for an issue that the nurse had to insert a catheter into my penis. Apparently she did not execute the task correctly because it was soon after that I developed strictures in my urethra without really knowing that they were there. 1992 was the first time that I started to realize that I had a problem because of a UTI. I met with urologist, Dr. Christopher Doyle, at the Longwood Medical Center in Boston. He suggested that I have a urethrotomy/DVIU. The procedure was done at Brigham Women’s Hospital that summer. I remember that being one of the most painful and bloody experiences of my life. The results, of course, were short lived – poor flow and more UTIs.
Flash forward to February 2013. The worst UTI I have ever had! I was out of work for three days and on antibiotics for 10 days. It did clear for the time being. I met with the urological group in the city where I live. The doctor there scheduled me for a retrograde urethrogram to be done in May. (At that visit I learned that I had another UTI. Macrobid was prescribed.) The catheter that was inserted for the retrograde urethrogram was very thin but very uncomfortable. The retrograde urethrogram showed that I had one stricture that wasn’t too bad (the repair from 1992) and another closer to the bladder. The doctor here referred me to Dr. Vanni at the Lahey Clinic in Burlington, MA.
My first meeting with Dr. Vanni was June 10, 2013. After looking at the retrograde film he suggested that I have a urethroplasty – buccal mucosal onlay graft to repair the 7-10cm stricture that I had. I really had no other choice but to say “let’s get this taken care of”. I could not keep living the way I way living. I was then scheduled for a July 5th surgery.
The surgery lasted from 7:30am – 1:30pm. 9cm was taken from the left inside cheek of my mouth. The harvesting lasted from 7:30am-10:30am then from 10:30am-1:30pm they made the incision in my perineum to get to the diseased urethra.
A catheter was inserted for the repair to heal. I was not really looking forward to the catheter as it was just that that put me here in the first place.
I was in the hospital for one day after surgery. I was able to walk, with a little help at first and then got better each time after. I had very little pain from the repair and incision. Most of the pain came from the graft harvest. This has been the spot of quickest healing though. I was sent home after learning to take care of my catheter leg bag and night canister.
There were challenges to learn from at home – keeping the connections clean, showering with a catheter, getting into bed, sleeping, sitting, eating while standing up, not being able to pick up my one year old son, etc. It was a long 23 days but…
Each day has gotten better than the day before. On July 29th I had the VCUG test to determine if the graft in the penis was “water tight”. I was very excited to finally get the catheter out, hoping that I did not do anything bad to mess up the healing process. During the test it was the first time in 27 years that I peed like a “normal” guy. It was the most incredible feeling! Dr. Vanni watched the contrast come out and was happy to see that all was well with the graft. He said that the healing would continue for about another month for so.
That leads me to today. I am peeing freely. Sounds dumb, but it is a very gratifying sensation. I still have some pains but nothing that stops me in my tracks. I am in the next and, I hope, final stage of recovery – no lifting anything heavier than 10lbs, no intercourse for 3-4 more weeks, and no straddling (cycling, etc.) for 6 months or so. I see Dr. Vanni again in 4 months for a uriflow and cystoscopy for him to see how the repair is doing and to check for scarring.
I am hoping to celebrate being 100% back to myself at the New Year. I knew I was going to say this at some point during my journey with a stricture – I wish I had done this a long time ago. It is a long and slow process but well worth the results.
I hope that my experience has provided some help/comfort to you, if you are reading.
Please contact me if you have any further questions, I would not mind answering. unch01(at)yahoodotcom
Thanks so much Ken for creating this website.
Chris – thanks soooooo much for sharing your story. I created this site because I couldn’t find much good information when I started this journey. And as I went through it, and discovered good data, tips and techniques, etc., I wanted to share it for others who are just starting out, so they didn’t feel quite so “at sea” as I did. Urologists are very busy, and urologists with good experience with strictures are rare. So it’s really hard to get answers in any kind of a timely manner. Also, there is a lot of bad information (myths and such that are not supported by clinical data) floating around. So I also want to help propagate what is supported by the science, and quell what is not. But ultimately, hearing from the people who have gone through this stuff – especially the stricture and repair – is going to be helpful and comforting to others. Thanks again!
Ken
One month after surgery:
Stream is still great with the cath out. Still some achiness from the incision site and surrounding muscles. Still have to sit in the “slouch position. Not on any painkillers or other meds since the cath came out.
No lifting anything heavier than 10lbs and intercourse is on hold for about another month.
Have been driving. The longest trip that I have driven has been about 45 minutes from home with a standard shift.
Have been walking shorts walks in the neighborhood to get my strength back. Doing Kegel exercises to get my bladder toned up again.
Today is better than yesterday.
I am planning to do some very light weights next so that I can start lifting my one year old son again.
Chris,
Thanks for that. I, too, am still having quite a bit of pain in the surgery site. I didn’t know you were too. I’m sorry that you are, but it’s also nice to know I’m not unique. Tomorrow will be 3 weeks for me since the surgery.
Here’s to more healing for all of us!
Ken
Yeah, sitting is a challenge too. Hard chairs are rough. Padding really helps. I went out with my family for dinner for the first time since my surgery and the chair at the restaurant was a bit too hard for any length of time.
Driving has been interesting too.
Ken, are you taking any pain meds for it?
C
Chris – no I have stopped the pain medication. The pain hasn’t risen to that level for about a week and a half. But then again, I have been using this inflatable donut ring since the day of the surgery. It has been terrific and allowed me to sit in my recliner with very little pain. I have tried using it on my office chair too, but that hasn’t been as good. I can only sit there for a limited time before the pain starts increasing. I did go to a movie on Sunday (RED 2 – really good, BTW;)), and took my donut. It worked really well! The theater seat reclined just a bit and enough for me so to comfortably the whole time. I have not tried to drive yet, as I have not been able to sit anywhere without the donut and without leaning back (in that slouch position you mentioned). But based on what you said, I sat for about 5 minutes on two cushions in the office. It wasn’t bad…at the time. But after I got up and had been moving around for about 15 minutes, the pain told me – in no uncertain terms – that I am NOT READY to go donut-free just yet.
So I’ll test the waters every few days until I don’t need the donut anymore. From what I’ve read and heard, that could be awhile – even another several weeks or more. But I’ll keep updating you guys. I guess I should also be posting about this stuff too:-P.
Cheers,
Ken
ihi chris and ken , u guys had urtheroplasty almost 5 years, how is now u guys feeling.
Still good here!
My 18yr old son has a Bulbar Stricture and Needing a Urethroplasty with Buccal Mucosa Graft. We have been told to plan a him being immobile for 4 weeks with 2 catheters, suprapubic catheter and Catheter to keep the stricture clear. I am so scared and nervous for my son. I need tips on how to help my son with his recovery will keeping him from being embarrassed as his mother cares for him. We were advised to lay flat or sit at a recline. No sitting in a chair, riding in a car for 3-4 weeks. Please help I feel overwhelmed. Karin
Karin – I hope I can help you feel less overwhelmed. My stricture was in the bulbar region too, so I can hopefully shed some light:). Did they tell you whether the urethroplasty would be an “end-to-end” type? Another term they often use for this is “anastomosis” or end-to-end anastomosis.” That is what I had. If they already know they will need a buccal mucosa graft, they are probably referring to an augmented anastomotic surgery where they excise the stricture AND use the graft to augment the stitching of the 2 healthy halves back together. As with any surgery, there will be some post-op pain. And with the buccal graft, he’ll also have some pain in his mouth for a few days. Some guys say that’s actually the thing that bugged them the most. Anyway, if it’s like what I went through, he should be fine sitting at an incline. The incision is usually made in the perineum, which will result in a lot of swelling and bruising in the scrotum area afterward. It will look WAY worse than it is:-P. I didn’t have both catheters at the same time. I had the suprapubic one for several months before the surgery and then had the “regular” one for about 10 days after the surgery. That takes some getting used to for sure. But it isn’t anything terribly awful. And the week or two that they will be in will be over before you know it (compared to the 6 months I had mine, anyway:)). The biggest thing to pay attention to is securing the catheter to the leg with something strong (not relying on one of those stretchy bands with just velcro). The danger is catching the tube on something and yanking it. If you have it secured with something that sticks to the skin (something like the STATLOCK), he should be fine. I had mine secured like that once when mI was wearing my bedside bag that has a long dangly hose, and I caught it on the arm of a chair. It pulled the tip of the hose/tube out of the end of the catheter, but the securement sticker held fast. So though I made a bit of a mess (this will almost certainly happen at some point – a bit of pee on the carpet, etc.), I was uninjured.
Anyway, all-in-all things seem much scarier than they really are. A mother is always going to worry, of course. And any surgery comes with risks and issues. But this is a surgery with a high rate of success. So hopefully he will be able to pee much better and have this problem fixed once and for all after it’s all done.
Feel free to ask me anything. If I can answer, I will.
Good luck!
Ken
Karin – Just re-reading your post and wanted to address the “plan on him being immobile” thing. While you should always verify things like what I’m about to say with your doctors, “immobile” in this case is extremely relative. Sure, compared to his normal 18 year old activities, it will seem pretty immobile. But mainly this means no sports and not much in the way of physical running around, dancing, cavorting, jumping, running, riding bikes, swimming in pools (or anywhere for that matter:-P), etc. But it doesn’t mean he’ll be confined to bed either. For at least the first few days after surgery, he should stay around the house to get used to living with a catheter (or 2 in this case, it sounds like). He’ll have a bedside bag for night time, which has a long tube to attach to the cath. But if he wants to go out, or just get dressed and not have to carry his large bedside bag around with him, there are leg bags (they will probably give you several) that have shorter, flexible tubes that you attach to a smaller, more streamlined bag that you attach to your leg with stretchy straps. You can then get dressed, concealing the bag. It’s probably best to wear drawstring-type pants or some other type of loose pants at this point. But then he could at least go places (best to be the passenger if in a car), walk around (carefully), go to a movie, etc. So “immobile” may not be a bad as it sounded. Does that help?
Ken
I see this is an old post but wanted to take a shot. I am a year and a half removed from dviu and facing a urethraplasty in a month or so. My question to the group is that I have had abdominal burning and pain pretty consistent that does not go away. Have any of you experienced this? Urologist says there may be a chance they are tied together.
Hi Michael. I did not have constant pain. It only hurt (pre-urethroplasty) when I went to the bathroom. Then again, I also did not have DVIU at any point. So I’m not sure if that has anything to do with it. Sorry I couldn’t be more help! At least you are talking to your urologist about it. That’s the best thing at this point. Hopefully all will be well after you’ve had your urethroplasty.
Thanks Ken! Pain has been a constant prior to DVIU. It’s one of the reasons we found the blockage. Your and others postings on here have helped me a ton as I am a bit stressed with what is ahead. Thanks for taking the time to replay!!!
You’re welcome!
I Just got my urethroplasty done yesterday it was 1 stage I’m only 21 yrs old, i’m trying to adjust to having the catheter in because i do have sutures toward the tip of my penis, and it is slightly painful when the catheter moves any advice to make it more comfortable?
Hi Tyler. So did you have the one where they actually cut the penis? that sounds painful! Since I did not have that kind, I can’t offer any advice about the sutures. As for the pain caused by the catheter moving in and out of the penis (more accurately, the penis moving up and down the catheter), every morning I would clean the catheter tube to get the sticky “gunk” off of it with an alcohol swab. Then I would put ointment on the tube to lubricate it so it would slide in and out a bit easier. Probably vaseline is good, though I used Neosporin ointment which had some numbing stuff in it. But you should definitely ask you doctor before using any bacitracin ointment. It can sometimes impede healing. That’s why vaseline might be a better thing. I hope your pain dies down soon! And best of luck healing up!
Hey Ken, I’m about 2.5 weeks post op i had my catheter taken out yesterday but a fistula formed right away although there is no new stricture the fistula is there so they put the catheter back in for another week, hoping for the best but not sure what will end up happening, also end up lifting something pretty heavy so i’m hoping that doesn’t mess up my graft.
Also it was 1 stage they cut from the meatus to about halfway down the shaft, only about 5 stitches in total on the outer layer of skin, it’s been a tough road of recovery from the start, i’m hoping no stricture returns and that my fistula heals up by the time my catheter comes back out, stitches aren’t gone yet i expect them to fall out soon.
Thanks for posting, Michael. I hope that things heal up so you can get that catheter out. Best of luck!
So…upon waking today I had a new sensation that I haven’t had yet. There is a feeling in my penis like an irritation. Almost like there is urine in there that hasn’t gotten all the way out.
From what I understand, there is not much “feeling” inside of the penis itself, any pain/feeling that is felt is more likely coming from the bladder and feels like it is in the penis itself.
So it makes me wonder if it is the bladder healing where the cath balloon was rubbing inside or something else.
I will be paying close attention to it through the day and make a call if it doesn’t get better. Increasing my water intake a bit more for the day too.
Chris – I believe you are correct about that “urge” sensation being mainly caused by the bladder, even though it feels like it’s inside the penis. But your are also right to call your doc! I want anyone else reading this to understand that they should always check with their medical provider if they have questions about pain, etc.
Having said that, I can vouch for the fact that a Foley catheter can do lots of bladder-wall damage. Check out the video on this post – The Duette – A Better Catheter Than The Foley. After having the suprapubic catheter in for about 5 weeks, I started to recognize when I needed to slightly pull on my tube until it stopped because it had fallen away from the bladder wall. There was also “aspiration,” which is when the suction from the drainage eyes in the Foley actually sucks part of the bladder wall into the holes. That video I mentioned above shows the Duette, a catheter that, unlike the Foley, prevents most of the trauma caused by aspiration and poking. I truly wish I could have convinced my hospital to use a Duette.
But anyway, after two months, my bladder was very used to having a catheter, and I never saw blood or felt much pain after that until after the surgery, when I had the Foley inserted up the penis. My bladder was NOT happy about that. I saw blood in my bag 4 or 5 times during that first 10 days or so. I guess it was due to a catheter being in a place it (my body) was not used to. Plus there was probably some trauma to the bladder involved with the new placement during the surgery.
So I think it MAY be possible that your bladder, which was new to the whole catheter thing (you only had yours for a few weeks right?), may have reacted more violently than mine. I do hope it’s that and not the site of the urethroplasty. But as you know, only your doctors can do the testing to make sure.
Sending good luck and healing thoughts!
Ken
follow up from this morning:
The spot that was kinda “pinchy” improved. Strange enough, it did after a bowel movement. I guess it is all kinda connected there the bladder and the “other stuff” so it doesn’t surprise me.
I am also noticing the affects coffee has on my bladder. I think I am going to cut out the coffee for a while to see if I can get some of the achiness to go away.
Thanks for the update, Chris! My update for the day is that there is little-to-no change. The site of the incision and the scrotum both still hurt. One thing I noticed was that there are still some sharpish barbs from the stitches still poking out of the incision site. I asked my surgeon during Friday’s VCUG whether they were supposed to dissolve on their own, and he said “absolutely.” And he warned me NOT to pull at them. So I think some of the skin tenderness might be due to that. The swelling and pain in the scrotum is still there due to the retraction of the scrotum done during the surgery. So ironically, the REASON for the surgery is all fixed. Now I have to heal from the process of fixing it. Sigh. So still sitting on the inflatable donut.
Ken
Ken,
I was thinking that too today, that the discomfort is more from the way that they went in and the issues from that. Wish that when the repair healed that everything else would too. Oh well….
Hope your recovery is better with each day.
C
I just had surgery and my mouth seems to be worst pain. I have been using mouthwash and salt/warm water. I have a question about showeribg
Hello,do you have any suggestions?I had urethral reconstruction operation on the 15 of july and since then I am living on antibiotics.If I missed a pill or stop taking them I get a kidney infection and back to hospital.Doctors can’t find the reason.
Hi Kristina. So you do not have a catheter now I assume? That being the case, I wonder if you have gotten rid of the bacteria in your system from your other UTIs. Folks who have indwelling catheters already have the bacteria present. It just depends on whether or not they “invade” your tissues to cause an infection. After I got rid of my catheter, they tested my urine several times over the course of a month or two to make sure those bacteria weren’t there any longer. Have you had that done? Antibiotics normally should not be taken long-term. But you do have to kill of the infection causing ones before you can stop. Maybe another antibiotic? for sure you should ask your doctor about this.
I hope you can get off those meds soon!
Ken
Thank you for sharing your story.
I have had minor surgery several times for removal of scar tissue . The results were good the first time and lasted 2 years. This last time though has been bad and after only 4 months scar tissue has regrown and my pee flow has slowed way down again.
Looks like I will have the urethral reconstruction with tissue from the mouth in the coming 6 months. Otherwise it will be a lifetime of catheterizing. And in the meantime I have developed Peyronnie’s that may or may not be a result of the scar tissue.
It’s all a bit depressing so good to hear of your positive outcomes.
I never had a urethroplasty. I’m in fear I may need one someday. I stupidly agreed to a catheter insertion back in May this year, which has brought be nothing but pain after urination since. Saw a urologist here in Connecticut and got the prostatitis BS diagnosis. I’m sure trouble lies ahead for me down the road.
Hi Neil,
If you have a stricture the best long term result and most permanent is urethroplasty, from everything that I am reading/researching. Like I had said above, I have been living with one for 27 years, until now. The month of the surgery is the worst, I won’t lie. It is by far the hardest thing I have had to do in my life, so far.
If you want a second opinion and don’t mind the drive try to get to the Lahey and meet with Dr. Vanni. I think he can really help you.
All the best to you Neil. You are doing the right thing by taking care of yourself.
C
Neil,
Yup. Prostatitis is the “go-to” dx. Compared to what you’re going through, it is probably no worse to start moving toward at least getting a good diagnosis of urethral stricture. In my case, they couldn’t get the catheter up the normal way (because they THOUGHT I only had prostatitis), so they kept pushing harder and harder. Talk about pain – my new “10” on the pain scale. It was only after failing to get the catheter in that they (the ER nurses) consulted Urology, who very quickly came to a suspicion of a stricture. They took me up to Urology and shot water and a camera up into the penis (watched on the screen – very interesting). But that was all they needed to do to confirm I had a stricture. They then did a retrograde urethrogram with contrast (under the x-ray) to determine how much blockage there was. It turned out to be pretty much complete. The ER nurses made it worse by stretching and mashing it all to hell. But the doctor immediately decided that I needed a suprapubic catheter, and had it done that night.
If you are still having trouble with pain and restricted flow, and are still suffering (I still am!) from a sort of PTSD from the original catheterization attempt, you might ask (maybe very forcefully) for them to do a retrograde urethrogram, and if they see a stricture, put in a suprapubic catheter.
I hope you get an accurate diagnosis and get the right process started as soon as you can!
Good luck.
Ken
I’m just scared because my guy in his flaccid state is small and I get very faint when I think of anything else going up there damaging it more. I’m freaked out. This has ruined my life. I’m 33 and I have lost my lust for everything. I have no urologists in CT that specialize in this. I’m very scared. I have such PTSD I need Klonopin and some other antidepressant to sleep at night. I’m also dealing with MRSA, too. My future is not looking good. I can’t even find solace in music, anymore.
Oh that is very sad to hear, Neil! But given that, it would seem to me that it might be worth expanding your search for a nearby urologist with stricture experience, and demand a suprapubic catheter. Also, they can diagnose a stricture without sticking anything too far up your guy. They just shoot fluid up there and watch it under an X-ray. It isn’t bad at all, seriously. You can even ask for some lidocaine gel to be put in prior to. Once you are on the path toward getting it fixed, you will ABSOLUTELY have something to look forward to, as the process is pretty predictable, ending with a 90%+ chance of a cure.
I hope things get better for you. Good luck!
Ken
Ken,
I’m still peeing on my own. The flow is not consistent like it was before the catheter. It also hurts inside my urethra and at the tip. It’s more like a burning-ripping-tearing feel. I’ve always had leakage after urination for as long as I remember, but now it’s worse. Especially when I sit down after peeing, and it’s not comfortable. I already had a narrow urethra prior, so I’m worried that this has made it worse. My pain lies under my scrotum, (where the prostate is), inside my urethra, and at the tip of my little guy. The MRSA thing is on my nose and I’m treating it with antibiotic cream that was prescribed.
Neil,
Obviously none of us here are doctors (or medical professionals of any kind) and cannot make a diagnosis, I would say that your symptoms certainly seem to match mine before I was diagnosed. The pain, and where the pain is, sounds like me. I cannot say this strongly enough – get tested to determine if you have a stricture. If one doctor won’t do the test, go to another one, and so on, until you can at least confirm or rule out a urethral stricture. Knowledge is power. And you won’t know what steps to take toward fixing this until you know with certainty. If you DO have a stricture, request a suprapubic catheter be put in until your surgery. That way, you won’t have to worry about anyone trying to stick a catheter up your guy again.
And about the MRSA (again stating for the record that I am not a medical professional) – you must be very careful that you take all antibiotics exactly as prescribed and do not deviate. Stopping any antibiotic treatment before it is complete (unless you are instructed to by your doctor) is dangerous because that is how antibiotic-resistant bacteria (like MRSA) are created in the first place.
Again, I wish you the best of luck with all this.
Ken
Ken,
I went for a physical today. My PCP (he is a nice man) is aware of the situation, and he says some people have to deal with pain after urination for their whole lives. It should get better. To me this part of the visit was total bullshit. He admitted they did a butcher job on me, and basically just told me I have to deal with it. Everything else with the visit went fine. My blood work is fine. The minus of the visit is I have lost 20 pounds since June from the stress of all this. I’m 5’8, usually weigh 150, but I’m down to 133 behind the mental anguish/physical pain this is causing me. I pee with normal flow most times, but after I pee it hurts so bad. Sitting or standing makes no difference. The extra pee that trickles out feels like a razor blade, or it’s at least going over one, which leads me to believe there’s some major trauma leftover from the catheterization that was done for no reason. I never had a tender spot just under my scrotum until this happened either, which means they might of damage to that, as well. His final conclusion with the situation is to give it more time to heal and it will be okay. I doubt it. I don’t know what to do. He also didn’t think I should be scoped right now because I’m in pain. My PCP is related to Hartford Hospital, in Hartford, CT, which is the closest hospital to my house. They are a very well respected hospital. If I had listened to him back in April, I would not be in this position right now. The hospital that butchered me was Middlesex Hospital, in Middletown, CT. The reason I went to Middlesex, even though it is far away from my house, is due to the fact that my girlfriend works there, and she could get me setup with financial aid there. Little did I know what a subpar Hospital this place is. At this point I’m at a loss for words, and I have no clue how I’m going to get the help I need. I’m open to any advice. I know none of us are Doctors, but you guys seem to be pretty lucky that you’re in a close vicinity to good urologists. I’m 33 and I just lost my whole spring/summer behind this. I fear the winter when all the flu/colds come around, because at this weight, and with my mental state this could get way worse.
Neil,
So you’re saying you went to your primary care doctor, told him you were having a lot of pain urinating, and he said that’s normal? And that you may have to live with this for the rest of your life? And that you should NOT get scoped because of the pain you’re having right now…but may never go away? Surely he offered to give you a consult to urology if, after a certain period of time, the pain did NOT go away, right? That’s how things usually work if the doctor thinks it may resolve on its own. You’ll be told something like “if you’re still having pain in two more weeks, come back and we’ll re-assess the situation.” My advice would be to do that anyway – go back in a week or two if you are still having the pain – and ask if you can have a consult to urology.
The good news here is that you have seen a doctor about this. If you go back after a couple of weeks and cannot get a consult to urology, get a second opinion.
I hope that helps.
Sending healing wishes!
Ken
Also, Ken. My Doctor said some strictures take years to develop. If my injury is from back in May do you think it would show up after doing a RUG, this soon?
Neil, he’s right about some strictures taking years to develop. they are usually caused by some slight trauma – maybe by a scratch from the insertion of a catheter, but other things as well, like any kind of trauma to the area. Then that small area lays down scar tissue as it tries to heal, and does this repeatedly over a long period of time until you start to notice symptoms like pain, weak pee-stream, possibly blood in the urine, etc. However, there are also strictures that happen very quickly, as in straddle injuries. The trauma is much more significant and immediate. What he’s probably saying (reminding everyone I’m NOT a doctor) is that IF this happened due to your particularly difficult and painful catheter insertion, the actual damage would have been caused by the rubber catheter, which is not likely to have crushed or smashed anything such that you went from NOT having a stricture blockage before the insertion, to HAVING one after. Scar tissue doesn’t usually grow that fast, and probably would not show up on a RUG (retrograde urethrogram). But you MAY have had a previously existing stricture that was made worse by the catheter incident, which WOULD show on a RUG). That is what happened to me. Though unlike you, I WAS having trouble peeing (and having pain), which was the reason I went to the ER in the first place. I couldn’t pee at all that day.
What was the reason you went to the hospital at all on the day of the cath incident? You say you didn’t have any problem peeing. But doctors don’t typically approve catheterizing people unless there is a reason. And they also don’t usually do it JUST to train new docs and nurses unless they thought you needed the catheter for something in the first place. If you can prove that they DID (cath you just to train someone when there was no doctor order to cath you for your own medical reason), you may want to see a lawyer.
Hope all this helps.
Ken
Neil,
I am sorry to hear about your struggle. I believe Yale-New Haven Hospital is one of the top 50 hospitals in the country according to the new US News rating. They have a trauma center as well and almost certainly have a urologist on staff who is familiar with this surgery. In fact there are several very good hospitals in Connecticut. Search “US News Best Hospitals”. You might try just searching for a urologist associated with Yale-New Haven or one of the other well rated hospitals near where you are. That is basically how I found someone here in Utah. I was misdiagnosed several times before I got fed up and went looking for someone knowledgeable. I searched webpages of hospital staff and found a urologist who specializes in trauma surgery and stricture repair then just made an appointment cold with no referral. Ken is right, the diagnosis is pretty simple and painless.
Best of luck.
Ray
And Yale-New Haven has the added benefit of being the hospital where I was born. So…;).
Ray, thank you. I will look into that. Ken, how long did you live in CT? I also commend you for starting this site and being so honest with everything. I hope you keep the updates coming. You provide me with hope in my darkest days.
Neil,
Only as a baby in the 60s. Then it was off to California. And I’m so glad the site is helping you in at least some way. That was my intent from the start. I hope you get the help you need soon!
Cheers,
Ken
Ray, I checked out all the urologist profiles on their site, and I don’t quite see any that specialize in strictures. I gave them a call, but they won’t see me without a referral from my PCP. Connecticut is tough. We have a lot of top-notch doctors, but the urology field is not that great.
Neil,
I’m sorry to hear that. I tried quickly from this end and it looks like they might be calling it “voiding dysfunction” rather than “stricture” surgery or urethroplasty. That makes sense since most people won’t really know what those mean. I think you said earlier that you were afraid that you “might” need urethroplasty in the future. Is the reason you think that because of the catheter that was placed? Just having a catheter inserted – even badly – won’t necessarily result in a stricture and even if one does form it may not be severe enough to cause you any real trouble down the road. Maybe before you chase the stricture option too far you should concentrate on just finding a urologist you trust. Strictures usually don’t cause painful urination. At least mine never did.
You said you were being treated for MRSA. I had to look up what that means. Apparently it’s an antibiotic resistant infection? Is that right?
Did the MRSA come from the catheter? If you are being treated with an exotic antibiotic to clear it up, some of those have been known to affect mood. You might want to ask your doctor about that. You also said you you suffer from PTSD. Are you being treated in a VA hospital?
Ray, I have to disagree with you on strictures not causing pain. Mine certainly did. And I was just living with it for more than a year – almost getting used to it. But the more it closed off my flow, the more it hurt. I asked my urologist what caused the pain, since in BMG urethroplasty, they leave the scar-tissue in, but simply widen the diameter where the stricture was. I thought that odd, since in my world “strictures cause pain.” He said the pain comes from the bladder trying to push against the blockage. So if there is no flow-impediment, there is no pain (generally).
Now that I have had the end-to-end surgery, there is no pain at all, which was such a lovely surprise. I didn’t realize how much I had come to accept it as part of peeing.
Obviously this condition has a lot of variability from person-to-person, so some may not feel pain. But from what my doc said, it’s pretty common for strictures to cause pain.
Anyone else want to chime in with whether they had pain with the stricture?
Ken
Ray,
Yes, I’m using an ointment because all the antibiotics they put me on have produced problems. And, yes I’m worried about the consequences from the catheter placement. I was in the worst pain ever with that. That where my PTSD is from. I can’t get by it. I’m not a veteran. I tried to get into the Air Force reserves a few years back, but I ended up not making it through boot camp. I got an entry-level separation.
The MRSA came after I had taken a round of ciprofloxacin. That’s when all my trouble started. The catheter was never necessary, as I was able to pee on my own. I think the Doctor was just using me to train a nurse doing it for the first time. I should’ve known better. My life is ruined. I’ve been confined to my house the whole spring/summer. All I can do is pray to God for strength to get out of this dark place.
I’m 33 and my life feels ruined. I don’t know how to fix this.
Neil,
It’s hard to hear that you feel this way! I so wish I could help. I was a bit confused by your saying that can pee on your own. Is that still true? If so, is it restricted and/or painful? If not, then is MRSA your only physical ailment? If so, it doesn’t last forever, since MRSA is treatable.
If you do have stricture problems, you needn’t worry about them trying to get a catheter put up your penis. If you need a catheter, you can demand a suprapubic instead, so you don’t have to deal with the PTSD of having it shoved up your penis.
We may not know all the things you’re dealing with, but it does sound like there is reason for hope. I hope you come to the same conclusion.
Good luck!!
Ken
I agree with Ken, when I was first realizing that the strictures were there, it was more from the pain than the stream slowing down. I do recall many times going pee and holding my breath before I start due to the pain. I slowly got used to the pain (maybe that is why I have a high threshold for pain now, who knows).
With the urethroplasty (BMG) done, I am feeling no pain peeing like it was when I had the stricture. And I am noticing that the painful sensations (tip sensitivity from the cath being in) are disappearing from after the cath removal too, which is great.
Today is better than yesterday.
I’m sorry to have misspoken. It looks like painful urination is a common symptom. I must be the exception. I should have checked first. My own history includes some pretty brutal treatment and I assumed if that didn’t produce painful urination it must be uncommon. That’s clearly wrong. I should relate my whole story at some point. I’ll start working on it. I hope things begin to turn around for you soon Neil.
Best of luck.
NP Ray! We’re all learning here. I’ve been surprised several times at having a different symptom from what was expected – the scrotal pain being the latest. My doctor was surprised by it when I told him at the VCUG, though he didn’t seem to think it was a big deal. It was only when I found the threat on the forum listed in the article above that I knew other guys have had the same symptoms. That made me feel better about it.
Cheers!
Ken
Ken,
My main reason for going to the ER that day was because they had given me an antibiotic the prior visit for the rash in my groin (which at the time I was told was folliculitis and if it was MRSA they would call me back, which they never did). This antibiotic was making me feel lousy: stomach felt like I was on a roller coaster ride, loss of appetite, very weak. It was the wrong antibiotic for the MRSA I had, unbeknownst to me, as they never called me back to tell me I had MRSA. I also did a urine specimen at this first visit which was fine. The reason he gave me during the second visit for the catheter/foley was for a, “sterile specimen,” which was total BS because you can get that with a mid-stream catch, which I had did the prior visit. I even asked the nurse if it was necessary because I thought it would make me faint. She just seemed like she didn’t care. Had the Doctor looked at the file from the previous visit; he would’ve seen my urine was clean and that the rash in my groin was indeed MRSA, and by putting a catheter in he could’ve put the MRSA into my body which is deadly once it hits your organs. I’ve spoken with a few other doctors who don’t understand his reasoning for catheterizing a 33-year-old man that is able to pee on his own. That is what a mid-stream catch is for. I also asked this particular nurse if she had done a lot of these, but her answer seemed a little doubtful. I guess it’s my fault. I should’ve known better, but I’m a trusting person. That’s what I get for trusting the wrong people. I’ve finally put a complaint into the hospital, and you’re the second person who told me to contact a lawyer, my cousin being the first. I think I may have to at this point. It’s caused me serious emotional and physical pain.
Thanks for the clarification. Yes, I think there is no harm in speaking with an attorney. I’m not a fan of our overly-litigious society, but it does sound like there may be some negligence, possibly, stating for the record that I am not an attorney.
Good luck! I hope your ordeal will end soon.
Ken
I’ve had emergency situations like that about 5 times in the past 15 years or so. The first time was the worst when they had to pierce my abdomen through to the bladder to relieve the pressure. The latest time it happened, at least they drew off fluid from the bladder with a regular needle.
That sounds awful. So I think having the urethroplasty will solve that problem for good for you. Best of luck with it!
I used a catheter for years………….I wish I hadn’t. Just had the op and i am in the first week of recovery It will be a long road, but one I wish I had taken years ago.
Good luck, John!
Hi All,
I came across this website after just having urethroplasty surgery. I thought I would relaymy journey through it all.
I am 29 years old and live in England. I have been living with a stricture for a long time. Probably about 8 – 10 years.
My flow rate prior to the surgery was very low and I would get sometimes not be able to pass urine unless I sat down on the toilet and pushed incredibly hard. I finally went and got myself checked out.
I have private healthcare through my job and checked into a London clinic. I underwent a flow rate test, various blood tests, prostate test (uncomfortable), and X-ray scans on my kidneys, bladder and urethra. The tests showed that I had a large structure and I needed surgery.
On the day of the surgery I checked into my room, changed into my robes and rested on the operating bed. The procedure was done under general. I have never had this type of anesthetic and it was weird. I literally remember nothing of the operation. You get a slight tingly taste in the mouth and then you are out cold.
After the operation I was in my bed. I looked across and I was hooked up to an IV line with some sort of paracetamol drip line. I had a catheter also that drained my bladder. I stayed one night, which was possibly the loneliest I have ever felt. After the meds wore off I felt uncomfortable and restless. I believe I lost around 4Litres of urine in the catheter bag.
Throughout the night my blood pressure and temperature was checked. This is to ensure you have not developed any infections with the procedure.
The next day the catheter was removed at 6am after about 3hours of sleep. This scared me a lot, however the removing of the catheter is not painful at all. Just be prepared to feel some sensation.
At around 10am I was discharged. I was given 3days worth of Ciprofloxacin and Diclofenac tablets coupled with some paracetamol. I was also given what I can only describe as a front nappy. A word of advice, try and get as many of these as possible. If not you can buy some similar called Tena Men Absorbent Protectors. These will be required to protect your boxers, pants from blood spots discharged from the urethra.
The real pain came when going to the toilet. A considerable amount of blood is in my urine and still is 4 days after the operation. The burning sensation has dramatically reduced however passing urine is still uncomfortable. One thing I would recommend is not to hold your urine in. If you need to go then do so. Unfortunately I held my urine in, going only twice a day whilst consuming 2Litres of water and learnt the hard way. I have found that passing urine more frequently is less painful and less blood comes out.
As I said I’m into fourth day. Things are getting much better down there. I’m due for a check up with my urologist in a weeks time where I will undergo an X-ray and blood test.
For those that are unsure about the procedure and are somewhat scared. My flow rate has increased dramatically, it’s fantastic. However, there is some discomfort after the procedure. I expect the bleeding to last another week. I have not received any dilating techniques or my own catheter, however I am sure, after my check up in a week that I will receive some more instructions.
Good luck to those who are going to go through the procedure. I would recommend to do it. Hopefully, in 4-5 weeks time I will have no further symptoms.
One question I have is about intercourse. I am married and did have sex fairly often. Having sex now seems unimaginable as I can barely go to the toilet. In spite of this, what is the expected time after the operation when you can even consider intercourse? I am getting the morning glory which is fine and no problems with it.
Thanks for your story, Dominic! We really appreciate it. Best of luck to you!
Ken
I never experienced pain when peeing, just slow, split, spraying stream.
Josh – this is AFTER your urethroplasty?
Ken
Sorry for the delayed response. This was before the surgery. Stream is straight now.
Hi gents,
Had about 40+ reuilds since 1968, I’m one of the original pioneer urethroplasty children of “Childrens”. You all deserve a break. It’s not easy, I’ve had sp tubes, catheters x 100 plus, 10 rebuilds varying from the Johansen technique to arm grafts (Scrotal, foreskin, the whole schmeel) . Would like to know more about the buccal graft as my graft that was done back in 1991 is failing as I can get a 14f down there and it’s narrowing down, even with a coude’, fun fun. Being in my 40s, the healing process is likely a different game than younger days. One would think that the inside of the mouth has a rather good tolerance for bacteria and can stretch well. Until then, I have my kit of sounds, my coude, and years of abx-not a good way to live and just about at witts end.
For those of you that have had or have SP tubes, yes, they like all catheters pinch. Sleeping is no fun either.
Hi David,
Wow! That’s a LOT of experience. Way more than any of us have had. Here is a before/after x-ray of a buccal mucosa overlay graft (BMG) – https://onlinelibrary.wiley.com/store/10.1111/j.1464-410X.2005.05352.x/asset/image_n/BJU_5352_f1.gif?v=1&t=hk2qwzeu&s=6259be19f2ffceea2c178fea23cbe917cd137158. The patient had what they call a “pan-urethral stricture,” which is basically a series of multiple complex strictures along the urethra. Note how the seemingly mangled and twisted urethral tube in the “before” picture” is transformed in the 2nd picture into a tube that is much wider and unrestricted, even though it still isn’t smooth, it has been widened along the length of the urethra such that a sufficient flow of urine is now possible.
Since you’ve had urethroplasty before, I don’t want to tell you stuff you don’t already know – intimately, perhaps. But the basic idea with the BMG is that you’re not cutting out the scar tissue that causes a stricture (usually), but simply widening the area of constriction by adding the buccal tissue to the urethral wall.
You mention you “kit of sounds.” For those who don’t know, these (sounds) are instruments for dilating the urethra (see this link for more information – https://www.centerforreconstructiveurology.org/urethral-stricture/dilation-urethrotomy-stent.htm). Is your urologist telling you to continue dilating? The literature seems to indicate that dilation is an extremely temporary measure. I know you’ve had multiple surgeries before, so I’m curious as to what your status is regarding the usually more permanent fix of urethroplasty. It sounds (no pun intended) like you’ve had them before, but that they didn’t do the trick. Is there a reason for that?
Sorry for all the questions. I’m just trying to soak up as much real-life information for the site as possible.
Thanks again for sharing with us!
Ken
Hi David,
Wow! You have had quite the medical life. Have they been able to figure out why everything keeps closing up?
I am 41 y.o. and had a buccal mucosa graft on July 5th. Of course it is still too early to tell what will be, but my doctor feels very confident that it should be a lifetime repair. I do understand that there is a small percentage of complications after the repair. I feel safe in knowing that the doctor I have will be able to help me out, if anything does happen.
All the best,
C
Just wanted to let you know that I just set up a forum on the site! It might make it easier for all of us to keep up with each other rather than having to use the comments sections across multiple posts. Right now I have a “General Discussion” forum and a “Urethral Strictures And Their Treatments” forum. You can find the forums page here: https://livingwithacatheter.com/community-forums/
I’ll be putting this comment on multiple posts so everyone who has been involved in our discussions is aware, so I apologize in advance for the possible duplicate e-mails you may get.
Cheers!
Ken
Hi every one ….
My father has urethral stricture and his age is 65 so please tell me,is it better to do urethroplasty?
Ganesh,
There are a lot of factors to consider. Certainly the long-term success rate is better with urethroplasty (90%+). But a urethrotomy (which is what I assume your father’s alternative is) is much less invasive, requires less hospital time, and is therefore likely to be less costly. But its long-term success rate is much lower – between 33 and 50 percent. So he would likely have to have it redone a few times in the coming years if he has a urethrotomy. The urethroplasty also requires a much longer recovery period.
So (keeping in mind I am not a medical professional) my advice is: if he is healthy, has a small stricture, and can afford the time and cost of urethroplasty, that would be the way to go. But if he does not mind having to go back for repeat urethrotomies over the coming years, and any of those other things are not true, then urethrotomy is a good choice.
I hope that helps.
Good luck!
Ken
Hi, I just wanted to check in with you all. My 40-yr old husband just had a urethroplasty (stage 1…) yesterday at UC Irvine with Dr. Gelman. We are from Portland, but sent him there for surgery, as he had a really bad run-around with OHSU up here (a lot of the same garbage as you have said). He’s been in a SPC for about 3 months now, while waiting for the ER’s forced Foley cath to heal.
They harvested from both sides of his mouth. He’s down there alone, we have 2 small kids and in other family to watch them, so we had to divide and conquer this. His brother is flying in from Chicago to be with him next week. He’s texted me that the mouth pain is severe, and he has a lidocaine to swish n spit.
He anticipates coming home between hospital discharge and the next round of tests/SPC removal (3 wks post op?). It’s a 2 hr flight. I’m not so sure that’s a good idea.
I guess I’m just looking for some hope here! Will this get better?
Hi Julie,
Wow – your statement of “He’s been in a SPC for about 3 months now, while waiting for the ER’s forced Foley cath to heal” is very telling, since 3 of us who’ve been chatting on the site had that happen to us now. Why in the heck don’t they teach this stuff to ER nurses?
You said he had a “stage 1.” Does that mean he’s having the 2-stage method (having to go back 6-12 months later for part 2)? Here is an abstract that says there is a high (good) long-term success rate for the 2-stage urethroplasty with buccal grafts, though the info is a bit old, from 2002 – https://www.ncbi.nlm.nih.gov/pubmed/11743290
From what my docs told me leading up to my surgery (they said they MIGHT have to take buccal tissue for a graft), the inside of the mouth does hurt afterward, but heals really quickly.
I found a great day-by-day blog from a guy who went through a similar thing to your husband. I think you’ll find this interesting – https://heainfo.org/ChrisSurgeryBlog.html The worst part of this story was that the hospital gave him no pain medication for the Stage 1! Only Tylenol. If it hadn’t been for that, I think things would have been MUCH better for him in the early part of his recovery. Overall this guy was glad he had it done, but it wasn’t as good as he’d hoped. However, that was 7-8 years ago. Things have gotten much better since then.
Remember, I’m not a medical professional. I’m still recovering from a 1-stage urethroplasty and it has been great, except for the long recovery. I don’t think anyone who’s commented here to date has had a 2-stage surgery, so we’ve no experience to pass on. But even the story at the above blog ends with things better than they were before the surgeries.
Good luck, and pass it on to your husband!
Ken
I am aged 58 and since a motorcycle accident I have had the urethea opened twice once at age 20 which lasted until 47 then again which lasted to 54. The consultant said I needed uretheaplastry and I was scheduled 18 months ago to have it but at the last minute I had the cutting process done as I was uncertain about the consultants skill and the lack of information about the operation. Since
Then things have been fine but I am scheduled to be seen again and I know the only solution is the operation but I still have concerns on the outcome as it is not always successful and not without other problems whereas the dilation process carries me forward a number of years and does not restrict my life in any
Shape or form. Is the operation a success in all areas for those who have had it.
Graham, the statistics say that end-to-end urethroplasty is the gold standard for this repair and the odds are 90%+ for a long-term success. So yes, the outcome is not always successful. But it is most of the time. Of course each case is unique, and the odds may change depending on which type of urethroplasty you have.
However – there IS something to be said for the dilation and/or urethrotomy as long as it doesn’t really bother you to have it done multiple times. It is decidedly less invasive and will interrupt your life for smaller periods of time when you have them. It’s another of those situations where there are advantages and disadvantages of both situations.
I hope that helps.
Good luck!
Ken
Hey Ken,
Great idea and great implementation of the idea (i.e. – the Web site)! I wish I’d known about it sooner.
I won’t go into great detail, but I’m 30 years old living in the Toronto area and just underwent my first urethroplasty on Dec 3, 2013. They had to replace a large area of scar tissue in my urethra, so they did a buccal skin graft. The surgery was scheduled to last for about 4 hours, but it ended up being almost 8 hours.
It all began about 2-3 years ago when I noticed pain when I would urinate, so I went to a walk-in clinic and the doctor there prescribed me some pills for chlamydia. The problem persisted so I went back again and he prescribed the same thing.
Fast forward about 7-8 months and I notice bleeding after urinating. At this point my flow was still decent. Needless to say I freaked out and went to my family doctor who prescribed Cipro. Unfortunately that did not solve my problem so I was referred to a (very crappy) urologist and prescribed vibramycin.
This urologist insisted on doing a cystoscopy. What I DIDN’T realize is that he also dilated me, but it didn’t seem to hurt all that much. Then he prescribed sulfa, knowing that cipro and vibramycin proved unsuccessful on me.
The problem went away, my flow went back to maximum capacity and the bleeding stopped, no more painful urination!
6 months later the problem came back! So I went back to the same doctor, who did another cystoscopy on me and once again dilated me without telling me. However – this time my stricture (which I didn’t even know was there until later) had grown tighter so he had to do some heavy dilating. I…bled….like….hell!!!!!! For a whole week, blood just came out of my penis both when I peed, after I peed, and involuntarily throughout the day. But alas, after a week or two of excessive bleeding, I could pee normally and without blood.
3 months later and the problem came back. Not trusting the previous doctor, believing he had done more damage than good to me, I had my family doctor refer me to a different urologist who I met with…and also did not trust.
So I went back to my family doctor after I cancelled a cystoscopy appointment with the 2nd urologist, and requested he send me to someone who could put me under general anaesthesia for dilation. He referred me to a hospital downtown to meet with the chief of urology – who I later found out is known for his repair of urethral strictures in the medical community (Dr. Ron Kodama).
Met with him – he did a very brief cysto which was MUCH more comfortable, X-ray, and void test on me and saw I was peeing through what he referred to as a “pin hole.” He said the only means of healing for me would be open surgery (urethroplasty). After discussing the details, I agreed to it.
Fast forward to the present and I am 6 days out of my urethroplasty surgery. I was in the hospital for 3 days and then discharged. They put in a urethral catheter to keep the graft stretched out (and block urine from passing through), and put in a superpubic catheter to drain out the urine from the bladder. Both catheters are ballooned inside the bladder. They sent me home with hydramorphone (lighter version of morphine pills) and cipro (no surprise there).
I can’t say too much yet – my balls were HUGE after the surgery, I can tell you that; but they have shrunken down since then. There was some bruising (I believe they referred to it as hemotosis) so they said to just go easy on them and it should go away on its own.
The superpubic catheter area is sensitive when the home nurse comes and does the bandaging and cleans the area. She will press down around the catheter and it causes discomfort. I assume that will go away in time.
The hardest part (pun intended) though, are the nocturnal erections. OMG….in the daytime, no problem! THe last thing I want to think about is sex while I have a catheter shoved through my urethra. But at night time you can’t really control it, and even without having any naughty dreams, I’ll wake up every 30-45 minutes with an erection.
The problem is that the erection…is…P-A-I-N-F-U-L!!!!!!! Excruciatingly so! Needless to say there is usually some bleeding afterwards. I called the urologist’s office and he will likely call in a prescription to my pharmacy for some medicine to lower testosterone or some similar effect to kill my boners for a while.
So the main issue I’ve been having is with penis sensitivity because of the erections. The area around the incision is great, they did an amazing job there, but the erections are causing some serious pain/discomfort with the urethral catheter.
I read most of the comments by you, Chris, and the others above – my heart goes out to David! I can’t imagine having to go through such excessive amounts of treatment! It’s good to know from reading here and in your other posts that the first month of healing is the worst part.
I go back on the 23rd to have the catheters removed and do the VCUG. God-willing everything is fine and I will certainly post any updates when I can!
Thank you for sharing your story – not just you Ken, but to all the other posters who found your site. Urethral strictures are an absolutely terrible misery to live with, and it’s not a topic that is talked about widely. Most people have no idea what a stricture is. I’m happy to throw my two cents into the pot! 🙂
Hi Jonathan,
Thanks for your story and good wishes for a good and fast recovery! 3 days out huh? Wow. I’m curious about what kind of urethroplasty you had. Did they go up through the perineum? Or was it one of the ones where they operate directly on you “fella?” Since you mentioned having your testicles be swollen, it sounds like the perineal approach, which is what I had. That swelling goes down in a week or two.
About the pain with the erections – I did have some of that, but it wasn’t terrible, just a bit unpleasant. I’m sure your doctor has thought of this, but have you tried putting an ointment like a bacitracin on the tube on the area just where the catheter comes out, and a few inches further down? That can help lubricate the tube, making it easier when your penis grows ans shrinks and it goes in and out. But you should check with the doc before doing it – me not being a medical professional and all.
The suprapubic catheter will get better. By the end (I had mine for 6 months), there was no pain at all at the SP tube insertion point. It gets much better within a week or two. I see you’ll be having your SP tube out before the 4-week point. Good! They have to be changed every month or so. The most bothersome pain for me, by far, was during those changes. My bladder would spasm something fierce the first 3 times. After that it was much better.
Anyway, I wish you the best of luck. And thanks for posting!
Ken
Hey Ken!
Thanks for your thorough and prompt reply!
To be perfectly honest I can’t really comment on where the incision was made because quite frankly…I don’t know. lol. I wanted as little detail as possible when it came to the procedure itself because honestly I get freaked out when it comes to that stuff. What you’re assuming (perineal approach) sounds like the most plausible scenario, but I can’t say for certain. I will ask the doctor when I see him for the VCUG in 10 days.
Having points of comparison really helps. This site is really magnificent and the first site I could find where people can talk about it. You really foster a welcoming, non-threatening environment so once again kudos to you for that.
I called the hospital a dozen times until they finally put me through to the doctor and I mentioned the problems with the nocturnal erections, and the fact that they cause bleeding, and he prescribed me some gabapentin and diazepam – so far they have not proved effective but it’s only my 2nd day using them. My major concern is that with all the bleeding the erections are causing the newly grafted urethra will not actually be healing and will just form another stricture.
Another complication I’ve had – when I use the bathroom for excretion, there is usually about two tablespoons worth of urine that come out of the penis around the catheter. When I called the doctor’s office the receptionist said that’s not “normal” but it does happen from patient to patient.
So the lack of sleep at night combined with the consistent bleeding out of my penis, and the small amounts of urine passing out of the penis during excretion, I’m not having a wonderful time at all. lol. This feels like anything but a recovery.
Do you have any thoughts on the aforementioned matters? And yes, I know you’re not a medical professional; your experience from having gone through urethroplasty and having catheters is enough for me to respect your opinions. 😉
Thanks!!!!
PS: Next time I talk to my doctor I’ll ask him about the lubricating ointment
Jonathan,
I’m sorry to hear about these difficulties. Getting blood around the catheter could mean blood coming from the wound. But it could also still be coming from the bladder, if the balloon is coming away from the opening by any at all. The little bit of suction/aspiration from the catheter does trauma to the bladder wall, which causes a bit of bleeding. So it’s hard to know for sure. If your doctor says it isn’t cause for too much concern, you should trust that. Remember, I didn’t have a graft. So the extra bleeding you mention could be from the extra “stuff” you had to go through with the graft. There is more surface area with stitches (it would seem to me), so more bleeding should be expected (in my non-medical-professional’s opinion;)). Also, one thing to remember with the graft is that it will enlarge the area where the stricture is. If you had the surgery where they simply enlarge the urethra with the graft, rather than cut the section out (end-to-end), then you probably don’t need to worry about about reforming the stricture.
Keep us informed!
Ken
UPDATE: 26 Days Post-Op
Hey Ken, thank you very much for the information!
On Dec 23 (20 days post-op) I went in to the hospital for catheter removals and VCUG, but unfortunately there was a severe ice storm in Toronto and all the hospitals in the area were down to backup generator power, which did not include the X-ray machines in the entire hospital, so they could not complete the catheter removal (and obviously no VCUG was done).
Suprapubic Catheter Issues
What I DID learn, however, is that my suprapubic catheter was being taped wrong, resulting in frequent bladder spasms and hematuria (bloody urine). It got so bad that 2 days before my follow-up appointment, I had excruciating bladder spasms and blood and urine coming out of my urethra AROUND the foley! I had to call the ambulance on one night because there was so much pain I was convinced my body was rejecting the foley.
So the suprapubic catheter should have been running UP and then down towards the leg, like a horseshoe, so that way there is less tugging on the bladder which results in painful bladder spasms (and sleepless nights).
Foley Catheter Removal
At my follow-up 6 days ago the doctor agreed to remove the foley catheter because it was giving me problems but also stressed the importance of ‘looping’ the suprapubic catheter before running it towards the leg. Since then I have had a significant decrease in hematuria (blood in the urine) and bladder spasms. They do still occur, but usually when using the leg bag. I have not found any blood in the overnight bag.
Having the foley catheter removed from the urethra…HURT LIKE HELL! I actually screamed so loud my family heard me from the waiting area. I’ve been told that it likely hurt as much as it did because I was so nervous and that can cause the muscles to get tight.
Next Follow-Up
So moving forward: I am going in on Jan 2 after my urologist gets back from vacation and now that power has been restored to the hospital, and will have the suprapubic catheter removed and do the VCUG. I have heard/read mixed responses regarding having the superpubic catheter removed, so I’m not entirely sure what to expect. Hopefully it will be more uncomfortable than painful, but I am definitely looking forward to being catheter-free. 🙂
I will post an update next weekend to share my (hopefully final) experience in the hopes of aiding those undergoing or considering undergoing a urethroplasty, and also to share in the experience of others. Happy new year!!!
Thanks so much for the update Jonathan! I’m sorry to hear you had so many issues. I’ve actually not heard of someone having BOTH a suprapubic catheter AND a transurethral catheter at the same time. It would seem like the bladder would get confused. but since you’re down to just the SP (right?), things should be fine. I had the SP tube in for 6 months and the only thing that hurt was putting in a new one. Taking it out was no problem at all. I hope you have the same experience.
Thanks again, and Happy New Year!
Ken
UPDATE: JAN 1, 2013
I went in today for the VCUG and it’s hard to scope (pun intended) how the urethroplasty turned out. Here is how today went:
1. Voiding with X-Ray
One of the doctor’s residents used a “red rubber” to just open up the tip of my penis to ensure the urine could pass. He then filled my bladder via the suprapubic catheter while observing through the X-ray to make sure not to overfill, and had me urinate into a container (while laying down, which I thought was one of the strangest things ever). The result was that although it was the most force I’ve voided in at least 2 years, the doctor was not impressed.
2. Cystoscopy
The operating urologist came into the room and the resident showed him some X-ray slides and then he could see that there was a low flow zone around the bladder itself, so he numbed my penis using the numbing gel and then put in the standard cystoscope, which obviously hurt as I was only 4 weeks post-op so that area was still very sensitive. He showed me on the monitor screen that the area they grafted was perfect but there was now a small stricture closer to the bladder itself.
3. Void Test
My bladder was then refilled and I was sent to the washroom to perform a void test. It was difficult because there was much stinging, possibly caused by the cystoscopy, but most likely a combination of the “new” stricture and reconstructed area.
4. Suprapubic Catheter Removal
I was fearing that this would be the most difficult part (although I had not anticipated a scope being done), but it was actually barely noticeable. I had read so many stories of it hurting and burning and fluids oozing and pouring out, people coming home with the sponge bandage drenched with urine, but I actually don’t even remember any pain; just an ounce of discomfort, but nothing compared to the scope.
5. Consultation: Causation of “New” Stricture
I chose the urologist I did because he’s a known perfectionist in his field and is the chief of urology at the highest rated hospital in Toronto. However, he was quite frustrated at himself that he missed this small stricture.
He loaded up x-rays from before the surgery and showed how the force of my flow had opened up that small stricture close to my bladder and thusly when they x-rayed, the urethra looked average outside of the mid-bulbar area. Even during the surgery, he said that they were moving tools and scopes through the urethra and they did not find any stricture outside of the mid-bulbar stricture that they reconstructed with the buccal graft.
6. Consultation: Moving Forward
Although he believes it’s possible that if my flow expands the stricture again I will be able to live with it, it’s impossible to accurately or medically make that kind of prediction so I will have a void test in two months, to see how the flow looks. Our hope is that the urine flow will expand the stricture and then urine will flow normally.
He gave me one dosage of cipro (500mg), booked the follow-up appointment and sent me on my way.
7. At Home
So I’m at home and I’ve voided twice; I’m really hoping that in the next few weeks my voiding frequency will decrease. During the height of my stricture experience I would void every hour. There is usually some residual blood before the flow comes, but it is not bright red – more of a brown as I assume it is diluted with urine. Because of the anticipated pain I tend to “choke” the flow initially until it really starts pouring, and then of course it stings the grafted reconstruction area of the urethra. A little bit of incontinence 5-10 minutes once I’m back sitting/lying down.
Regarding the suprapubic wound, there really isn’t much to say. I’m taking it easy but haven’t really had any problems. It’s likely healing right now and I wouldn’t even know it. I’m looking forward to finally taking a full shower tomorrow without catheter tubes all over the place. LOL
Conclusion
I’m really, really hoping that my flow opens up the stricture and it doesn’t grow in length or shrink in diameter and I can just live with it. The doctor really did a wonderful reconstruction. Overall the penis tilts more to the left than it used to, but when erect it is fully straight – no bend, which is fantastic!
My personal opinion is that overall it was a success and there was likely no way of my urologist knowing about the second stricture if it were opened up from the intense flow, considering it was right outside of the bladder. However, I would love to hear any other opinions from those with expertise or experience. *cough cough* Ken *cough cough* LOL
I had a pelvic fracture with my urethra being detached from my prostate. This was in April 2013. I lived with a suprapubic catheter for around 4 months and then had an open urethroplasty (without graft). Surgery took about two hours and I left the hospital the next day.
The surgery recovery is quite painful and being able to sit comfortably took months. A cushion helped but not quite enough. I spent alot of time lying down and/or on my side. I was unable to work for almost two months.
At four weeks I had a VCUG which showed a watertight connection. Since then I have done well and urinate freely without pain or leakage.
My urologist is in San Francisco. Dr. Ben Breyer. Contact him for referrals in your area. 415-353-2200. bbreyer@urology.ucsf.edu.
There are very few urologists experienced in this procedure. Be careful to choose an experienced person.
Regarding bikes: all the urologists advise to never ride a regular bike again. These happen to be all the people trained by the same, now retired, expert so others may have a different opinion.
A recumbent is acceptable to my doc, if you can see yourself riding one. There are a variety of perineum-sparing seats out there and I will show a couple to my doc to see what he thinks. I’ll let you know.
Thanks for that info Steve! I have a bike seat that actually has two small ovals (one for each butt cheek) that does not put any pressure on the perineum. But all the way up to my 30s, I rode a regular bike. I wonder if that had anything to do with my stricture! They did say it could have been anything going back decades, with the scar tissue building up slowly over time. Interesting.
Thanks again, and Happy New Year!
Ken
Steve, about the safer bike seat – I just wrote a post about it – along with pictures and links to buy a non-structure-causing (or certainly more so than a “saddle”) bike seat: https://livingwithacatheter.com/bicycle-seat-help-prevent-urethral-stricture/
Happy New Year!
Ken
I am a 25 yr old male with a stricture, who already has undergone dilation, and a Cystoscopy, which seem to be causing more problems then good. I now have slight pain while urination and my “flow” seems similar to the way it was before the procedure. I am writing because I am interested in the urethroplasty surgery, but have read through multiple examples that it causes permanent penile shortening. Please if you have any history of this or information regarding this, I would like to hear about it. Also,any success stories out there if you have any recommendations on GOOD doctors and specialists to perform the procedure please let me know. Thanks in advance.
Hi Matthew,
Sorry to hear about the stricture. Yeah, the procedures you’ve been through will not offer any permanent solution for a stricture. Urethroplasty is pretty much the only lasting fix. The good news is that if your stricture is small (2 cm or less), and you have an end-to-end repair, the result is over 90% successful. See this study from 2007 – https://urology.iupui.edu/papers/reconstructive_bph/LongTermExcisionPrimaryAnastomosis.pdf And that was 6 years ago. There are some people who report penile shortening or bending/curvature, but it usually is pretty minor if it happens. I don’t have the numbers in front of me as to the likelihood of shortening, but from what my doctor said, it isn’t common (in short stricture repair). Also, remember I am not a medical professional. I can only relay information I’ve experienced or read/heard. As for how to gain access to a good surgeon for urethroplasty, that will be totally based on your location or how much you can travel. IT would be a matter of researching urologists in your area and probably getting a consult from your own doctor. I hope that helps. Good luck!
Hello,
My name is Lee and I’m from Ohio. I am a 28 year old male who has recently had a urethroplasty with buccal graft (almost 4 weeks ago). I thought I might share my pre-op experience with those who are interested with the pro’s/con’s etc.
Roughly 6 months ago, I had UTI (my 3rd one) and my wife encouraged me to see a urologist. I was also having some weird things like constant nightly urinations, a very weak stream, and trouble draining my bladder. I must admit, I was nervous going in to see a specialist, as I was expecting they might find something life-threatening. A cat scan revealed my kidneys were very swollen and my bladder looked unhealthy and distended. Further, a cystoscopy revealed that I had massive scar tissue build up in my urinary tract. This was I guess something I was born with. So the decision was made that I would need a urethroplasty with a buccal graft. However, before they could perform the procedure, they needed to put a SP catheter in to reduce the swelling in my kidneys an return my bladder to normal shape.
The Supra-Pubic Catheter:
I had the SP Catheter for 6 weeks before my operation. I would recommend anesthesia when inserting the SP catheter, I made the mistake of being awake and doing it in my doctors office. I had very painful bladder spasms in the beginning and was in bed for a few days. Once I had the SP tube changed (2-3 weeks later) to a silicone one, it became more comfortable and felt some what ‘normal’. A couple times my tube became clogged and I needed to rush to the hospital and get it unclogged. I must stress the importance of drinking a lot of water to avoid those kinds of problems. I was also able to continue a healthy sexual life style with this catheter, which was a big plus.
The urethroplasty with buccal graft:
On August 7th I had my surgery. I was obviously nervous, as the incision was going to be in the area between my anus and testicles. When I woke from surgery, I was a bit nauseous. The pain at the incision site was actually fairly dull, however, my mouth was in a TON of pain. I also had the addition of a Foley Catheter, so I was now sporting two catheters. I spent two nights in the hospital. Between the morphine and the painkillers, I was fairly comfortable. When I left the hospital, I was worried about having two catheters, but it really wasn’t that bad. Most the pain I had really stemmed from my mouth. I was given antibiotics, Vicodin, a Stool Softener, and an anti-boner pill for night-time. After three weeks, they took the Foley out. For a week now I have been peeing on my own (my stream is like a pressure washer- my confidence has been totally boosted. Peeing at first was a bit uncomfortable for a few days. My testicals were swollen after surgery which I was not expecting, however, eventually the swelling reduced (about 1-2 weeks). My SP catheter is pinched off and they say I will have it for another week (mostly there as a precaution). I have not been allowed to have sex yet, my doctor plans on talking to me about it next week when he takes out my SP. I do get a nightly erection now and then which can be sometimes kind of painful. Also, I can still feel a little tingling down by my incision site. Hopefully I will be able to resume physical and sexual activity soon. I will update next week (week 5).
Hi Lee. Thanks so much for your post! Your story is in many ways similar to mine. I didn’t have any UTIs prior to the SP catheter being inserted. And I was lucky enough to have sedation when they put in the SP tube, which they did in a procedure room down in radiology, since they have great tools for seeing what they’re doing. So that wasn’t painful at all. I never got the clogging issue with my SP tube. You’re so right though, you need to drink tons of water. Also, you started out with inflammation in your bladder, so that may have contributed. I was particularly interested in the “anti-boner medication you mentioned. What was that called? Because lots of guys have issues with nightly erections causing terrible pain and even under certain circumstances, damage a repair (with the procedures done directly one the penis). I also didn’t have the SP tube in after the urethroplasty. But again, you probably have it due to the inflammation issues you mentioned prior to the whole affair.
Thanks again for your story and good luck with your recovery. That pressure-washer stream feels great doesn’t it? Also, you can sit through movies without having to get up in the middle now:).
Cheers!
Ken
Hey Lee,
Where in Ohio did you get your Urethroplasty? How is it holding up? Do recommend the doc. Can you share the mane on here?
Thanks
Dennis
Hi Guys.
Have just found this thread and am wondering if anybody has needed a second operation. My problem was fairly rapid in regards to narrowing of the urethra. I had 2 openings within 3 years and 2 years later had urethroplasty. Experienced all the usual problems that others go through, i.e. very low sex drive, leakage ( continuing 9 years after surgery ), painful scrotum etc. I even had less common problems, in relation to the skin graft area inside the mouth, ( pain, swelling etc).
My flow rate is now very low and I am due to see my specialist in 10 days time.
I have a strong feeling that my specialist will recommend a second bout of surgery. Am therefore wondering if anybody has gone through a second op. I have heard that the graft is not taken from the mouth the second time. Is this true? Any info will be welcomed.
Regards
Andy
Hi Andy. I’m sorry to hear of your multiple stricture problem. I’m sure it is terrible. Personally, I do not know anyone who has had to go through a 2nd urethroplasty. Several folks have had multiple surgeries, but several urethroplasties – I don’t think. I hope someone else reads this and offers information. As regards the location of a skin graft that is NOT the mouth – I’ve heard of them taking a flap of skin from – you won’t like it – the penis. But not being a medical professional (always have to make sure I say that), I don’t keep up on all the latest literature. So things may have changed. I wonder if it might even be possible to use the material they are using for 3D printing now. There is some interesting stuff being done with 3d printed joints and even ears and other soft tissue. But the best bet is to have that conversation with your urologist, and maybe multiple urologists, if you can. I wish you the best of luck! Let us know how you go!
Hi ALL
im ahmed from DUBAI ,
thank you KEN for bringing such a a website togther i spend the past 2 hours reading every body’s post and expereiences
i mysylef has have just been through a post ope of urthroplasty as recommened by the chief of urology in one the local hopsotals arround , due the failure of a previous endoscopy hoping that it was gona resolve my urinal blockage
but i understand from you ken that stritures below 2 cm are 99% success rate right ? cuz i guess that was the ope i ve been through ??
Welcome Ahmed!
Yes, urethroplasty surgery is considered the best chance for long-term success. But there are several types of urethroplasty. See my post here: The Treatments For Stricture Of The Urethra. The best bet for a long-term success is the end-to-end anastomosis, which is the one they can only do if the stricture is short enough. According to the current data “Expected average success rate: The success rate for this procedure is above 95%, anastomotic urethroplasty is considered the “gold standard” of surgical repair options. It is generally used when strictures are less than 2 cm in length, however, some surgeons have had success with defects approaching 3 cm in length.” this is from a Wikipedia article (https://en.wikipedia.org/wiki/Urethroplasty#Anastomotic_urethroplasty), but the 3 primary sources are noted just after this quote. They say 95%. My doctor said that if you can still pee with a strong stream 6 months after the surgery, the odds go to 99%. I hope that helps!
Ken
Hi Ken,
Thanks for your effort in keeping this site current and full of great content that can’t be found elsewhere. I wish I had found this before my surgery as I might have been a little more prepared.
As it stands, I am on day 5 of recovery from Bucco Mucosal Urethroplasty and hoping for the best. The pain and discomfort is about what I expected. Not too bad considering. I’m off the oxy and manage with tylenol and advil about 2-3 times per day. Didn’t expect my scrotum to be so sore, blue and swollen…taking some getting used to.
My main concern about doing the procedure was getting a post-op infection, either at the site or some other hospital acquired infection like MERSA. I spent a lot of time preparing my pre-surgury plan was in place: choice of doctor, hospital choice, antibiotics, catheters, and post op care.
I wasn’t able to find much on doctors, who is good at this and who isn’t. So I just asked around a lot and visited a lot of doctors.
I wasn’t able to get any meaningful MERSA information. The federal website is down for at least another few months. It seemed the rates of hospital acquired infections vary dramatically from state to state. But I could not find data comparing hospitals within a state.
I made sure the antibiotic of choice for prophylactic purposes was an option for me (not allergic and I could tolerate it). I started a course 3 days prior to surgery and plan to keep taking it until some time after my catheter is finally removed.
I did some research on catheters and found some very interesting studies comparing a wide variety of catheters and the rates of catheter associated urinary tract infections (CAUTI). The worst seemed to be latex and the best having combinations of silicon/silver and other antimicrobial treatments. My doctor (who specializes in this procedure) was able to use one of the catheters from the study though he said they normally use latex. We’ll see how that works out. My catheter will be in for almost 3 weeks and the benefits of the coatings appear to taper off after the 1st week or so.
I did find some mentions in my research that the most important thing one can control in preventing CAUTI is post op care and catheter cleanliness. The difference between good and poor catheter care was attributed to a 3x difference in CAUTI outcome. So I’m trying my best to keep as sterile as possible, using sterile technique and supplies to make sure my catheter, catheter bags etc are as clean as possible.
The biggest trouble is being comfortable. Sleeping, sitting, standing while not painful is just….not comfortable. Hopefully this will improve in the coming days.
I’ll update again as my recovery progresses. Hope my thoughts are somewhat helpful to anyone else out there thinking of going down this road.
Thanks
Brian
Thanks for sharing your story, Brian! Sounds like things are going as per normal for you post-surgery. The scrotum pain was the most surprising thing for me AND some of the urology doctors. They seemed surprised that I was still having pain there so long even after the catheter was removed. But one of my surgeons was not surprised. He said they do a lot of cutting and burning in the process, and that it could take up to a year for that discomfort to abate. He was right. And it helped me to be prepared for it – expectation management is very beneficial. Apparently, though, most people don’t have pain that lasts that long. I guess it’s down to the individual.
About the sanitizing of bags, etc. While it is true that catheter care is important, that doesn’t mean sanitizing your bag(s) with antimicrobials, etc. There is no good evidence that doing that makes a difference. At least that the case in 2013. Have you found any new research that DOES show a difference? My article – Urinary Tract Infection and Catheter Care – goes into this in more detail. But typically what you must do involves things like never letting your bag get higher than your bladder (since that will allow back-flow into your bladder), cleaning off the area where the tube enters your body (either the tip of the penis or the abdomen), which will get “yucky” on a daily basis, rinsing your bags and tubes after you remove them (if you plan to re-use them), and keeping well hydrated, which will help keep things moving through your bladder. In addition to these things, I tried my hardest to limit the time the end of my tub was exposed to the air, so I had alcohol swabs handy when changing bags. I also wore my bedside/nighttime bag into the shower with me to keep water from getting into the tube. Neither of those last 2 things is supported by any clinical evidence that I have found. But it wasn’t much extra work to hedge my bets, so to speak.
Anyway, thanks again. And please do keep us updated.
Good luck!
Ken
Well today is the day! At 1:00 I get this catheter taken out. Hard to believe 17 days ago I had my surgery. The first few days were pretty uncomfortable but every day thereafter the pain and discomfort steadily subsided. Eating solid food wasn’t a problem at all. I have eaten normally since the recovery room and had a big Thanksgiving dinner 6 days after surgery. If all is well in a week, a month from now I would conclude the procedure was well worth it.
I found a very interesting bit of research on catheter removal times vs success rate (link at bottom of this post). Originally my doctor planned on 21 days. An appointment on the 21st day wasn’t possible, so I booked it a several days early rather than the following week. I was a bit concerned about the shorter time but according to this paper, 21 days may be unnecessarily long.
My link didn’t make it into the previous post. Here it is.
https://www.drhuhc.org/upload/doc/Early_Catheter_Removal.pdf
Thanks Brian! Congrats on getting the catheter out! So how did it go? How are things?
Ken
Ok, it’s been 1 2 full days since my catheter was removed and it’s awesome! So many years of stricture I forgot what it’s really like to 1) sleep all night without getting up 2) be the first guy to leave the bathroom stall rather than be there for 2 minutes and 3) drain my bladder in 8 seconds. At this point, very happy I did this procedure, happy with my doctor, etc. For reference my stricture length turned out to be about 3.5cm, so no easy job. The surgery lasted from 8 AM to my wake up in recovery at 1:30PM. Another reason I think doing this while I’m relatively young was a good call.
So, no infection, no leakage, no pain, stitches gone. Seems like the 2 weeks recovery was all a distant and faint dream. I’m playing tennis tonight and waxing my skis (if only there was snow in PDX right now). Obviously I am an advocate for this procedure, and my doctor. (Ken if posting his name is OK let me know). Looking back, I wish I had done this years ago.
At the end of the visit my doctor asked my why I chose him over another doctor I was “interviewing”. My past experience of having an old-school Urologist perform the unsuccessful urethrotomy 15 years ago guided my answer. (I’m no doctor, but that procedure in my opinion should be borderline illegal given the recovery, complications, need to self-catheterize and terrible success rate). This time around, I wanted a surgeon who was young, extremely specialized in urethroplasty and was using the very latest techniques. My personal feeling was that the other doctor who I didn’t use was a very competent, energetic, highly qualified surgeon, but a bit older guy who described his approach with more of an emphasis on “this is how I’ve been doing this for 15 years” whereas the doctor who did my procedure was younger and described his approach which seemed to be more advanced and evidence-based.
Hope this helps and good luck to you guys out there.
Brian, that’s GREAT! I’m so glad to hear about your results and I thank you for your post. Sure, go ahead and post your doctor’s name. Praise in public…right?:).
So 3.5 cm huh? Remind me again. Did you have the end-to-end anastomosis with a perineal approach? If so, I assume you needed a buccal graft to help close the gap, yes?
Thanks again for sharing your story with us! So glad things worked so well:).
Cheers,
Ken
Hi Ken. Thanks so much!
I had Bucco mucosal “dorsal” not end to end. Yes perineal. Approach.
One suggestion would be to request to not have the “dissolving stiches” in the perineal area, but something like non dissolving silk that they can take out after two week. The stiches just don’t dissolve we’ll down there and they feel terrible. I’m completely healed and active but after 4 weeks I still have one that grinds around when I walk. It’s very small but like little steel sliver. I’d go in and have it removed but I think I’m just gonna tough it out. The mouth stiches dissolved quickly and were fine.
Take care.
Brian
Hi Brian!
Just came across this… I have an end to end urethroplasty scheduled for this Thursday in PDX and I’m curious if you wouldn’t mind sharing your surgeon’s name with me. I’m scheduled with Dr. Dugi- any chance he’s one of the surgeons you looked at?
If you have the time to respond, it would be very much appreciated. Thanks so much,
-Greg
Hi all.
Ken, I am very glad to find this forum. I am looking at an urethroplasty in mid February. Scarred as hell because of the recovery time, potential issues during recovery, blood clots, infection, constipation, pain, etc. I fear constipation as i also have had a bout or two with diverticulitus (inflammation of the colon). Two and a half years ago a urologist found a stricture and performed urethrotomy. This last november I had some abdomen discomfort and noticed the stream had lightened a bit over time. Went to another urologist in the group and he scoped me and found the scar tissue was back. He was able to get his 14 fr scope past the stricture and up into the bladder. He then referred me to a colleague who was on maternity leave to do the RUG. A week ago friday I talked to the urologist who was to perform the RUG on the phone and told her I was having some difficulty voiding. She advised me to go to an ER and see if they could carefully pass a 12FR cath past the stricture. It was successfully done with minor pain and resistance. The results of the RUG were the location of a 3-4cm stricture. She also found a good size verticuli on the posterior of my bladder. She put the 12FR back in and is planning on taking it out Jan 26th when she puts in s SPC. I am concerned about the maintenance of the new SPC. That will be in 3 weeks allowing the scar tissue to not “fake her out” when she does the urethroplasty. I am really not looking forward to the next two months. Thanks for the Forum Ken.
Dennis
Ken and all,
Sorry, me again. My urologist did say she would probably have use a graft from the inside of my cheek. In either procedure, mine has yet to come, do most experience a good amount of blood coming down the outside of the catheter that is placed in the penis. I know with the Urethrotomy I did. When it dried on the cath it was like sandpaper on the inside of my penis until I called the urologist and they said to wash it off and apply some antibiotic ointment where the cath goes into the head.
Am I going to see blood on the outside of the penile cath?
Thanks
Dennis
Dennis, it sounds like you have come to the right place. Having been through the SPC and urethroplasty, I hope you will trust me that there is no need to be scared. You’ve already been through worse than what is coming up, what with the urethrotomy and the transurethral catheter. Compared to that, the SP tube is cake! This is mainly due to the fact that you get sedated when they put in the SP tube, and that daily living with the SP is (believe it or not) much easier than with a trans. cath. The penis is much more sensitive than the skin on the belly. And the logistics are more convenient. I was not truly aware of this until after my urethroplasty when I had the trans for 10 days! I can’t speak to the diverticules, but if you can go easy on the opiate pain meds after surgery, and make certain you take your Docusate (which they usually prescribe you along with your pain meds) religiously, along with drinking plenty of water (probably more than you usually do), you can minimize or even prevent most of the constipation symptoms.
I hope that helps. Good luck! And keep us updated!
Cheers,
Ken
Ken,
I am glad to hear you had a better experience with the SPC than the urethra cath. I trust that it may not be as bad as the urerotomy or the uretheral cath.
The urethroplasty recovery still has me scare to death!
Dennis
I don’t think MOST experience that, which I only say because I haven’t read about many mentioning it. I certainly did NOT. But I don’t have exhaustive data on this. The urologist is right about using some ointment at the tip. You can sort of move things back-and-forth a little bit once the ointment is all around the opening. Also, though there isn’t “bleeding” per se, the inside of the urethra is a very moist place, constantly producing mucosa to keep it that way. So you will notice some discharge on the tube, which is constantly moving into and out of the penis throughout the day and especially at night (nocturnal erections, etc.). And that stuff tends to dry out and form a but of a crust. I used to clean this stuff off every morning with an alcohol swab. You kind of have to use your thumbnail through the swab at times.
I hope that helps.
Ken
Ken and all,
I have another question. Did anyone have home health care come in to help with the suprapubic cath or anything else while you were mending from your cath or urethroplasty surgery?
Thanks
Dennis
Dennis, I did not have anyone come in to help. Anyone else?
Ken
Ken
Thanks for the words of encouragement!!!!
I will be checking in from time to time.
Dennis
Ken
1. Are you saying the SPC is less painful and troublesome than a cath through the penis? It sounds awful!
2. From what I read the recovery pain from the urethroplasty is the worst thins people have to endure. True? Still FRIGHTENED TO DEATH!
Thanks
Dennis
Dennis,
1. Yes. that is what I’m saying. It may be my own opinion of my own experience. But compared with the 2 weeks I had to have the trans after my surgery, I don’t think I could have handled it if I would have had to have the trans for the 6 months prior to my urethroplasty. It just became “the way it is” for me. At times I could almost forget about it. Not so with the trans. I’d like to hear form others on this.
2. About the recovery pain: the first night – the day of the surgery – was painful. But the level of pain dropped significantly the very next day. The biggest issue from day two was was that the pain lasted for so long. It was a much lower level of pain though. If I had been told to expect the pain to last for months, it wouldn’t have been so bad. But folks didn’t seem to know, which is what was so frustrating. I hope that helps.
Ken
Ken
Pain lasting for months, holly crap! If I may ask Ken, where did you get your done, are you in the states?
Mine will probably be with a graft from inside my cheek. What are the success rates for these? I know they are not usually as high as the end to end.
I get my SPC monday. The surgery in 3-4 weeks.
Thanks
Jeff in Oklahoma. I had the SPC in for nearly a year before the surgery to repair a 3cm stricture. Don;t sweat the SPC the main problem I had was with the other cath. I had afterwards that lead to much getting use to and off and on bleeding. Another sit. I think mI may share is the entire time I was with the SPC I showered without end of the tube being plugged or capped. I’m 3 weeks out of surgery and l;ooking forward to a healthy piss for the first time in 25 some years. Oh and my mouth bothered me more than the other atleast when it came down to pain level and amount of disscomfort.
Thanks Dennis! It’s great to get experiences from others in the comments here. I completely agree about the SPC being MUCH preferable to the “normal” catheter, especially if you have to have it for many months like you and I did (though you seem to have had yours longer!). I’m also glad you mentioned having no problems showering with the tube plugged or capped, which is what the actual data suggests should b the case. Sometimes I indulge my superstitions (keeping the bag on helping prevent UTI) if there is no real downside to doing so, just in case:). Also, I had read many times that the mouth is often the thing that causes the most pain after this surgery (it’s for the graft – for those who don’t know what we mean by this). So you definitely bear that out. Good luck on being catheter-free soon!!
Planning on the Urethroplsty in about 3 weeks. Does anyone have any suggestions on how to keep the bowels moving while on the painkillers? Miralax does not work for me.
Ken you recommended Ducosate. My urologist just recommends MiraLax, again which does not work for me.
I just talked to a pharmacist and she said none of the others are strong enough for opiates and she recommended Senna.
Any other helpful suggestions regarding bowel movements during the use of the pain meds?
Thanks in Advance!!!
Dennis
Dennis – I haven’t tried anything else, medication-wise. But you should drink lots of water. And you might want to stick to soft and/or easy-to-digest foods. I recently had my 1st colonoscopy and you have to do a liquid diet like 36 hours before it. Then they give you the super-laxative that would laugh at opiates or any other substance known to man. I’m not saying to buy GoLytely prep, which would be like the atom bomb of laxatives (in more ways than one:)), but if things ever got super bad…..
But before the nuclear option, my wife reminds me that her uncle swore by magnesium citrate, which is over-the-counter. Also, certain people are more susceptible to “loose bowels” than others. for instance, my wife says that Senna would have her doubled up in cramps for days if she tried that. But for me, it might be just the thing. As usual, you should probably run this question by your doc, in case some of these things would be ill-advised in combo with your surgery.
Good luck!
Ken
up date- just hanging on the couch, walking around in the house, since having the spc installed on monday, it is now friday. Had some discomfort and pain for 4 days from the install. Seems to be felling better. Surgery still 2 weeks away.
Thanks for the update Dennis! I’m betting you’ll be super glad to have the SP compared to a trans. good luck!
Ken
Ken,
It is a bit of an adjustment getting used to the pain from the procedure of getting the SP and changing the dressings. Other than that I am looking forward to it being less of a concern than the trans.
hey Ken,
Who did your urethroplasty and where? I see that no one on this site has recommended their urologists. Recommendations would be great to see. It would also be good to testimonials of men who have been through this after 6 months, one year, etc. I wish some of those who have gone through this would share their long term experiences. Dennis T
Dennis,
Mine was done by Dr. Thomas Rozanski. He is still working pretty exclusively as a VA doc right now. So if you have VA medical care, he can do it for you. But if not, he can’t. I actually didn’t know he was doing exclusively VA surgeries. But he is also teaching – this area (San Antonio, TX) being a hub for medical education. So hopefully he is passing on his expertise:).
Hi Guys,
im 3 weeks post ‘end to end’ for a small bulbar stricture ( they took out about 1cm) had my op in sussex (uk) nice to find this site, as there isnt a huge amount of positive information aside from horror stories! im 41 stricture was found by chance last year, u had a bleed, got referred to the local haematuria clinic, they found a bery narrow stricture right up nr my bladder. I had a urethrotomy ( never been in hospital in my life before….despite working in the hosp for years!!great area to start on!!) which failed quickly and the narrowing got worse.
They thought initially i would need a bucca mucosal graft as from the urethrogram it looked as though there was a further section, however it turned out this wasnt the case!…. i couldnt void during the urethrogram, at all, laying down the stricture pretty much sealed and nothing happened despite being filled to the brim with contrast! …. anyhow got referred and had surgery, was prepared for the pain and woke up with the consultant and nurses saying ‘ we didnt have to graft from your mouth’ turns out the stricture was so narrow they could hardly differentiate between it and the rest of the tissue…. no wonder itd been painfull during xmas!
Have had great support from my partner and friends and family, yes it hurt, my sccrotum was enormous, and i wasnt expecting the level of pain i got from it! the incision site is healed nicely ( 1 shower a day, soap and water and fresh clothes
2/3 times a day and tight underwear!!) though have still got some pain in my scrotum. have a large lump at base of penis which consultant said will disperse
over a few weeks, the brusing looked brutal and i did wonder whether the car crash that was my genitals would ever recover, but each day the swelling and bruising is less, nightime erections were and experience though was quite pleased to see i was still functioning!
Discharge around the catheter ( 16 silicone foley) was a worry till it was explained ( have just had a clean up again with a sterile wipe) , the only bad thing is i seemed to have got a uti which is current,y being hammered with antibacterials.
Thought i had picked up a cold, but had a temp ( sudden onset) joint pain and tiredness, checked my bag in the morning and urine was vile partner took speciment to gp at 9am and by 11am ( we live nearby) had started in tablets, was more annoyed as we are both in heakthcare and id been ultra carefull and aspetic in my approach to bag changes etc. oh well!
Drinking plenty to keep flushed etc, in 48 hrs i have my urethrogram and please please the foley can come out!….. and i can finish healing….. have read horror stories about penises being shorter/ bendy/ falling off ( joke) after surgery but it kind of looks okay from here , if a bit sad for itself!….. ill let you know the outcome of the urethrogram…. any advice welcome.
Thanks and best of luck, i cant wait to be able to pee without hopping from foot to foot/sweating or getting paranoid!
chris
Thanks for your story, Chris! Sorry you got a UTI so soon after the surgery. I got mine in the first few weeks after being catheterized, which was 6 months before my surgery. But I never got another one. Yeah, the scrotal pain will likely (though it isn’t a guarantee for all guys, apparently) last for several months, gradually decreasing over time until things are back to normal. My doc said it could take up to a year – which ended up being true for me – because in addition to the actual urethral repair, they have to do a lot of damage to tissue just to get to the site. And the retention ring for keeping your scrotum/testicles out of the way causes a lot of trauma too. They cut, burrow, cauterize, stretch, etc. So even after you’re peeing like a normal person again, you’re still healing from the all the tissue trauma for quite awhile after. But if you’re like most of us, it just keeps getting better – albeit slowly. Keep us in the loop! And thanks again!
Ken
thanks ken, staying in bed for a bit this morning as freezing outside! scrotal pain is definately weird, looks okay, bruising gone down about 70% but feels like burning, scratching if you touch it! think we all take for granted our delicate areas, its only till they get cut/ spliced and pulled you realise how sensitive the body is!
same surgeon is doing the urethrogram , said he didnt want anyone else fiddling around with it, hes a nice guy and was very candid and humorous when i popped in last week, explaining how they strip the urethra away from the tissue to access it! hence the bruising! 29hours ( not that im counting) till the urethrogram, ive done everything by the book so am hopefull its healed. One thing worth mentioning he suggested moisturising my scrotum, sounded weird, providing the catheter site is kept away and you dont rub anything into any open areas, it really did help.
He explained the skin stretches so much after the op that as well as the nerve endings getting angry the nerves under the skin layer are also reacting to the dryness caused when the scrotum goes back to normal size.
i tried it….. it did work, just needed to be really carefull, certainly took the burn/edge off. i used a decent thick moisturiser designed for extra dry skin ( one with a urea base….check the label) …. really helped…. just something you needto do in the privacy of your own room!
Anyhow….. hopefully ill be able to take my dog out again at the weekend, have missed that, it may only be three weeks out of your life but has felt longer!…. think ive watched most of the movies from sky!
As for donut cushion, i had the same issue, bought one, but stopped using it as when i got home after the op got piles ( roids!) which really added to the bonus of post op pain…. theyve gone back down thanks to some handy tips on using the loo…. ( stand dont sit….if u can) ….
best of luck everyone and stay positive…..
Thanks for the info, Chris! Sounds like things are proceeding well. And great explanation by your doc about why things are hurting in the scrotum!! I didn’t get quite the same level of detail but the idea about the nerve endings under the skin getting irritated due to dryness caused by shrinking back down to normal size. That’s a new data point for me (and hopefully will be useful for everyone else). I sometimes took to using cortisone cream down there, and that also helped, not only because it does do some moisturizing, but also because it has some hydrocortisone to help with the sensitivity.
Good luck with the urethrogram!
Ken
so bad news, consultants sec rang, hes been taken ill so urethrogram cancelled till early next week, must admit had a bit of a sob and pulled myself together…. hes going to ring me monday/tuesday and fit me in, partners just gone to hosp to pick up some more leg and night bags as am all out….. had my clothes ready and everything!! lol…. gutted but hey, another few days wont hurt, will give the uti a chance to clear, catheters had a few red bits in today and been catching so changed legs and seems better…..
Hes a nice guy, would rather wait and have him do it as he knows what hes done down there, as for the scrotum pain, definately worth getting a hypoallergenic moisturiser on then when its safe to, he mentioned hair regrowth which can be bothersome as well, but not noticed that, think im more dissapointed im not going to see how well i can pee!
oh well, early hight, feet up and a movie i think….. tommorows another day, trying to find a positive least it will give a chance for the bruising to go down a bit more! call me vain but i know lot of the staff having worked there for years so small talk during procedures is a bit awkward! ….
chris
Hang in there, Chris! The day will be here before you know it.
Ken
still waiting to hear date for foley out, in 4th weeks now and am sore and tired lol, also have one really sore spot at top of incisin and lump underneath, which has come on in last few days, looks fine ( checked in handmirror) am assuming part of healing process, but is raw if i walk any distance round house.
Need a decent nights kip to be fair, am hoping once catheter out i can heal up properly, penis has become quite sore but have used antispetic cream, think my bladder and surrounding area is a bit fed up with the foley now!…. have cut down the painkillers ( 30/500 solpadol & naproxen) but still on 1500mg daily amoxy for infection…. sorry for the moan, think cabin fever has set in a bit!
fingers x’d things will move forward this week
chris
You’re almost there! Just think how great it will be when the cath does come out! I went for 6 months with a catheter of some kind in. It was a wonderful sense of freedom when I was catheter free for the first time. As Dory says (Finding Nemo) “keep on swimming, swimming, swimming:). You got this.
Cheers!
Ken
My surgery is coming up on Monday, just a week away. My doc is fairly young and specialized in reconstructive surgery in her resident. She said I will have e caths, SPC to eliminate urine and a urinary tract foley to help keep the repair supported. She also said I wild have two drain tubes in my belly to remove any fluids from the surgery. Since we are looking at 4 cm we are looking at a BMG. She said pain in the mouth for a few days, pain in the lower back because of the operation position and of course in the perineum. She is going to prescribe valium to supress erections, percocet for pain, and something so the percocet doesn’t make me ill, and then something so percocet doesn’t constipate me. What pain meds did you use?
Hi Dennis,
Percocet is strong stuff. I only got Norco:-P. Taking it with food really helps with any nausea, which should be OK. I don’t usually get nauseous with it, though some folks do. So they didn’t give me anything for nausea. Taking it for several days will constipate you, so they usually five you Docusate. But that sometimes isn’t strong enough. It might help, if you are taking a lot of Percocet, to eat a softer diet and drink tons of fluids (that last thing is good advice just overall too).
Good luck!
Ken
Thanks for the advice Ken!
While I was healing from the SPC I ws on percocet for 3 days and taking anti nausea med pluc colace and one time ducolax.
URETHROGRAM
Well have been for my urtehrogram, nearly 4weeks but now quite healed, theres a small 2mm or so area not fully healed. initiallly i felt devastated as have cabin fever but surgeon was really nice, explained that just needs a bit more time which isnt unusual. So another housebound week!
With regards to the procedure my first urethrogram was not a great experience, this time however i felt as ease, he passed a tiny catheter alongside the existing one, clamped my penis ( poor chaps looking sorry for itself) and gently filled the area with contrast, then it was over. He says he prefers this method as he feels its less stressfull on the graft/area than withdrawing the foley and having the patient urintate, either way it wasnt in the slightest bit uncomfortable, just a bit wet afters lol!
oh well another 7 days, going to start on a zinc supplement and see if thst speeds things along.
chris
Glad to hear things went better. Too bad you have to do another week. I hope things are fully healed after that! About being housebound – why is that? I lived for 6 months with a catheter and it became my “new reality.” I couldn’t do certain things (work out at the gym, which I Never do anyway:-P, go swimming, etc.), but it certainly did not stop me going out and about to the shops or for a walk, a drive, the movies, etc. I just bunged on a leg bag (strapped it around the bottom part of my leg), and wore loose, long draw-string pants. the first time I wore jeans, I actually ended up pulling the tube out of the bag and making a mess. So I don’t recommend that:-P. Anyway, I think you shouldn’t have to be housebound if you have a leg bag. And even if you don’t, there were a few times when I went out to restaurants with my large drainage bag! I had a cloth bag that I put it in so people didn’t have to look at the pee. And I could drape a large jacket over the tube.
Maybe you could try some of those things?
Anyway – good luck in the coming week!
Ken
hi they did some bits in my bladder as well so he advised not to go out apart from small walks, which ive done round the garden. kind of worried what will happen if it doesnt heal? err….
the hosp advice was not to drive at all post op while cath was in….. bought some vitamins to perk myself up ,
bit fed up with it all !
Hi.
I have a stricture for 20 years or so. I had 2 Urethrotomy with no result. My stricture return after a month or so after these procedure. I am living in Atlanta area and I could not find a Dr that has experience with Urethraplasti.
1. Can you recommended a Dr for this procedure ?
2. If I need to travel out of Atlanta for the operation where can I stay after the operation until the catheters are removed ?
Thanks Joseph
Hi Joseph,
I don’t know of any urethroplasty specialists in Atlanta. And my surgeon only performs urethroplasty for VA patients. You wouldn’t happen to have Veterans medical benefits would you? If so, you might could contact Dr. Rozanski’s office here in San Antonio.
Perhaps others here would have a better idea of places in the US. Did you do a Google search? I thought I remembered reading about a place in Denver. Also, just a quick search for “urethroplasty doctors” turned up Washington University Hospital in St. Louis and the Charleston Area Physician’s Group in Charleston, WV, whose site is: https://www.camc.org/urethroplasty-for-urethral-stricture I hope that helps!
Good luck!
Ken
Ken,
Thanks a lot for your quick reply. I don’t have VA insurance, I do have United Health Insurance. I did research 2 years ago to find if there is an expert in Atlanta area but it looks like there is none.
1. If i go to Denver or Washington University Hospital I will need to rent a house for a month or so. I have a wife and 3 small children that i will need to take with me or else I will need to have someone to take care on me for the first 2 weeks after the operation.
By the way, I figure out that you had the operation done a year ago or so, how do you feel regarding urine flow, sex activity etc ? I have noticed from other forum that some people have this operation experience erection dysfunction and ejaculation issue ( No ejaculation). Can you please comment on it from your experience
Joseph – Everything is fine now. I have no issues. Urine and all other functions are normal.
Hi,
Sorry to hear about your stricture
situation. I just had a buccal mucosa urethroplasty done at Duke University by Dr. Aaron Lentz. Dr. Lentz and Dr. Andrew Petterson at this medical center specialize in this procedure. Duke is located in Durham. N.C.
Have consultation with Peterson about end-to-end urethroplasty (recommended by my regular urologist after two urethrotomies). I am terrified- all the pain and complications I am reading about on this site have me wishing there was another way. Can anybody give me some hope? Been dealing with stricture and awful symptoms for 22 years…
Hi Kyle. Think of it this way – this thing has been a problem for 22 years, and in a matter of weeks, it’ll be over! Like any other surgery, there is post-op pain for the first 24 hours, which gets much better in just a day or so. And it wasn’t even the most painful post-op pain I’ve had. After that, it’s mostly just annoying pain and discomfort dealing with a catheter for 2 weeks. The persistent pain we all describe in the scrotum that seems to last for a long time is truly nothing more than an irritating discomfort. The reason it had me so worried at first was that my docs and nurses all said I should have been over it after 4-6 weeks. But then I found out about the dozens of others who described exactly what I did about the pain lasting a long time being actually pretty normal. But they also all said (and I ultimately experienced this) that it would go away eventually. So to answer your question – there is every reason for hope. Good luck with your surgery and the wonderful ability to pee afterward!
Hi Ken and Joseph,
Feb 16th was my urethroplasty surgery. There are several doctors in the Cincinnati – Indianapolis area that do the procedure. There are a couple of old school docs at IU Health in Indianapolis. My dr is recently out of her residency from Eastern Virginia Med school, where they urethera reconstruction was pioneered. Her focus was on urethra reconstruction.
I had and end to end, but thought I was looking at the BMG. When the dr did the uretheral radiogram 4 weeks ago she estimated a 3 cm stricture. That is when the put in my spc and let the stricture do its natural thing. Evidently the urethra cath had made the stricture look longer than it was. So I was surprised when I woke up and still had the inside of my cheeks. She said it wasn’t necessary to do a BMG and did an end to end.
The first night in the hospital I had real bad indigestion due to the gas they put into the belly. Other than that,
I have experienced most of what others have written on here. I have the spc going to a urine bag and a cath in the urethra that is capped and is taped to the bandage over the spc. Although she put in two drains which I have not heard of on this forum. This moved excess fluid / blood out of the perineum area. The drains were in from surgery on Monday until Thursday morning. My guess is the drains reduce swelling. I have tenderness in the crotch, slightly swollen scrotum, and a little of occassional blood seepage around the end of the urethra cath on the head of the penis.
In the hospital pain meds were mostly Tylenol around the clock with an occasional small oxycodiene as needed. They gave me valium to suppress erections. Now I am on 500 mgs of tylenol every 6 hrs, with a percocet once or twice a day. Monday the 23rd will be the first week of recovery under the belt. Looking forward to getting a little better every day.
My dr (Dr. Brooke Edwards) is in a group of 35+ urologists in Cincinnati. One of the other urologists used to do the urethroplastys and was trained at Indiana University Health with the docs I mentioned above. I met with him before and he recommended the dr that did my procedure. He said she was better and had more of the newer techniques in her tool box. All the nurses loved my doc and said she was real good and very detail oriented. I feel pretty good about where we are right now.
I have a follow up with the dr on Friday and then the flow test is 3 weeks from surgery. I will update.
Thank You Dennis! That is fantastic information. It sounds like things went very well.
Ken
Dennis,
Are you living in Cincinnati – Indianapolis ? I am wondering what will/should happen to a patient living very far from the clinic ?
Did you have SPC months before the operation or only post operation ?
I hope everything will work for you.
Wish you fast recover,
Joseph
Joseph,
Just saw your post. Cleveland Clinic has Dr. Kenneth Angermeier, who is a nationally renowned reconstructive surgeon.
https://my.clevelandclinic.org/staff_directory/staff_display?doctorid=893
Joseph
I live 2 hours north of the hospital . The surgery was done at St Elizabeth’s in Edgewood, Kentucky. My wife and I stayed in a hotel the night before, surgery was on a Monday, insurance wanted me out on Wednesday, I stayed in the hospital and was released on Thursday. Thursday night we stayed in the hotel and drove home on Friday.
The SPC I had once they took out the urethra cath, 3 weeks prior to surgery so the dr. could let the stricture, scar tissue look more natural when she did the procedure. The urethra cath was smashing down the scar tissue making it look longer than what she needed to repair. Dr. Edwards is in a group called the Urology Group in Crestview Hills, Kentucky. They are right across the river from Cincinnati.
I did call the office of the doctors at IU Health weeks prior to my surgery and the office person said people come from all over to get the procedure there. The tough thing is after the procedure you can not sit regularly, you have to recline so weight is off perineum. I have seen people on this forum who said they flew after, but it was all I could do to cope with a 2 hour car ride in the reclining position.
Good Luck Joseph!
My doctor said there are a relatively very few doctors that she would recommend doing the surgery. Maybe these are people she went to school with. She said something about someone in Cleveland, and not sure where else. I guess you could look her up on the internet and call her office and maybe she could refer to someone near you.
Dennis
Ken
Do you have any pointers in reducing the irritation / swelling on the scrotum?
Dennis
Dennis,
Actually yes. Ice packs. I know it sounds bad:-P. But actually it isn’t that bad. And it does help. Also, putting some cortisone cream on them occasionally helps, too.
Good luck!
Ken
So just getting ready to goto hosp for urethrogram part 2! had cath for 6 weeks now…. lets hope that last 2mm has closed…..
I wanted to share my story and get advice from anywhere and anyone possible. Thanks in advanced to any responses i may get
So when I was 18 years old I started having some prostatitis related symptoms like frequent urination and uncomfortable ejaculation. When i went and saw my urologist, he insisted that I have a cystoscopy done to determine what is causing my symptoms. Although this scared me to death, he assured me that it would be uncomfortable but not too painful. So i went through with the cysto, and it was the most excruciating pain i had ever felt. Afterwards he said everything looked great and gave me 2 weeks of Cipro because he suspected bacterial prostatitis. After taking the Cipro for 2 weeks all my symptoms went away and i was feeling great, confirming that it was an infection that was causing my problems. Unfortunately i believe I may have needed a longer course of antibiotics to get rid of the infection , because once i stopped the cipro the symptoms came back and did not respond to a second course of antibiotics.
Anyway i am now a year removed from the cystoscopy and on top of the prostatitis i am now 100% sure that i have some scar tissue that has developed because i can feel a blockage and stinging in my urethra when i urinate and especially when i ejaculate. Reading about this horrible disease has made me DEEPLY regret ever getting a cystoscopy and my resentment towards the doctor that did it is on another level. As much as some people hate to admit it, the medical profession is a business, and doctors profit off of these procedures. I find it extremely careless that this doctors first approach to some minor symptoms was to insert a scope up my urethra without warning me of the potential complications.Especially considering how young i was at 18 yrs old. I am now 19 years old and have been in the darkest place of my life the past year and am honestly depressed due to these issues.. Im too young to be going through this and dread my future because i have very little hope things can get better. My flow is weak and my orgasms are painful/unfcomfortable which is really the most depressing part. I fear that i will never be able to enjoy sexual pleasure again which is a thought that is scarier than death itself honestly lol.
Any way sorry to bore you with my sob story, i know complaining isnt gonna serve any purpuse. My question to any one with expirience is:
Am i too young to have a urethroplasty done? I know that i can, but considering the potential side effects would it be best to just do nothing? My greatest fear is getting a procedure like this done and ending up with worse issues than i originally had. Any advice would be appreciated
Hi Adam,
Please don’t think your story is boring me/us. THAT is what this site is for! Thanks for sharing your story! To answer the general question of whether you’re too young to have a urethroplasty – almost certainly “no.” I don’t think there is an age limit on either end.
I highly recommend getting checked to see if you do, in fact, have a stricture. And if you do, having it removed via urethroplasty. Having it cut out via the scope like you seem to have had – which is called a urethrotomy – is not a lasting fix. Yes, it is less invasive. But if you have to have it done every year or two, I think that “benefit” is moot.
Keep us updated. And good luck!
Ken
Thanks for the quick response ken!
And i actually have not gotten a urethrotomy or any kind of treatment for my stricture. I just had a cystoscopy a little over a year ago which is what caused the scar tissue. I dont think ill ever go for a urethrotomy or dialation because from what ive read they do more harm than good, creating deeper scar tissue and not offering any kind of long term cure.
I am able to urinate but my flow is not what it should be and some days it is worse than others. Since i have also been struggling with prostatitis, it is difficult to determine how much the stricture has to do with restricting my flow since prostatitis has similar symptoms.
My guess is that my stricture is not too severe because some days my flow is pretty decent but still not what it was before these issues.
The tricky part is trying to predict whether the reward will outweight the risk. I understand that in your case and many other stories that ive read, treatment was absolutely necessary because you were unable to urinate. But in my case, I feel that if my surgeon makes a slight error during the procedure I could end up being much worse off. Im gonna ask my urologist for his opinion, but personally I think that unless the stricture gets worse my best option may be to hold off on a urethroplasty. This is a big surgery and seems to be best suited for those with severe strictures.
Your thoughts?
Hi Adam. I see. I thought you had been treated once already. I think you’re absolutely right. I’m not a big fan of taking unnecessary risks – of ANY kind:). And yeah, if you can function normally with just minor inconvenience periodically, it’s probably best to carry on without cutting into your body. Of course, as I am not a medical professional (the ever-needed disclaimer), it’s best to discuss this with your doctor. It’s nice to know about your options if things change, though.
Good luck!
Ken
Yeah haha. Im not sure how old you are/were when u suffered from strictures. If you dont mind me asking, were you sexually active at the time? And if so how badly did the strictures effect you during ejaculation? Thats really the issue that bothers me most. My orgasms are uncomfortable and sometimes painful. I dont see many people talking about thier sexual function as it relates to this issue, im not sure if that is because it more commonly effects older men that are not in action anymore lol.
Adam, I was 47 and yes, sexually active. I honestly don’t think it affected that part of things much, if at all, until the day I couldn’t pee. I also could do the other thing. The blockage had simply grown too large to allow anything to pass.
Strictures are actually not more common in older men. PROSTATE issues are, though. And that was part of my problem when I went to the emergency room. they just assumed, since I was in my 40s (which I would not call “older” anyway:-P) that it was that. So they tried jamming the Foley catheter up the normal route. But urethral strictures are an equal-opportunity issue with regard to age. In fact, you see it quite often in athletes. One thing the urology team quizzed me about when they saw I had a stricture was whether I was “sexually promiscuous.” That was because on of the main causes of strictures is sexually transmitted disease. So if acquired in that way, I can see it being painful or otherwise bothersome for sex.
Hopefully if you get thoroughly checked out, you might find the cause for the sex problems, which may or may not be a stricture.
Good luck!
Ken
So did you ever find out if you have a stricture?
I’m currently experiencing very frequent urination( over 30 times a day) with some irritation and discomfort in my urethra and think I have a stricture… I also had a cystoscopy but the urologist said everything was normal. I’m looking to get a second opinion now.
Its out….. urethrogram looked great, such a relief , has to go to the loo before I could leave the hospital!! and have been again since I got home and all I can say is wow!! got a four day course of antibiotics just to clear up any infection as the catheter was a bit of a mess when it came out.
for anyone struggling deciding whether to get it done or is in the recovery period there with it it really did get me down but I feel absolutely elated today
chris
Congratulations Chris!! That’s wonderful news:). I know that feeling of complete joy that comes from just being able to be free of the catheter and to pee like normal people:). Awesome. Good luck moving forward!!
Ken
Hi everyone. Thanks for sharing your stories!! This was extremely helpful for me when researching prior to tbe surgery. I’m posting because I’m curious if any of you had hypospadias repairs as a child. I did, and apparently that’s what caused my stricture. Since childhood, I’ve had a hypospadias repair, 1-2 dilation a as a child (may have been other surgery to fix hypospadias issues too. I was too young and don’t have records). Anyway … Here’s my story.
I’m 24, and I had a Urethroplasty with bmg on May 19 to repair a 1.5 cm stricture that had gotten worse after I had a dilation done last year. My flow has always been poor. So it was normal. But after the dilation, it went from bad to worse. I would have to push super hard to urinate, and I was going every 15 minutes or so. Anyway … My surgery is complete and my doctor said everything looked great after the procedure. They went through the perennial area. I went home after a one day hospital stay.
The first week was great. Everything was healing and doing well. Had some pain, but nothing major. My balls weren’t super swollen, but felt pretty heavy. About day 10 I noticed the gauze at the tip of my penis was very bloody. This is when my balls really started to swell up. I went to the ER and they tested my urine. I had an infection. I was on Cipro for 7 days after that. They also found a spot that was hard on the back of my tesicles (left one). Wasn’t alarming, so they told me to watch it. A few days later, I was changing my gauze and cleaning the area and I noticed some bloody pussy discharge. Thought the stitches had opened, but it was apparently a hematoma. Went to see my surgeon first thing in the AM and he squeezed the shit out of my balls to get the blood out. Worst pain ever!! My partner, who has been taking care of me, was with me and be almost passed out because he said it looked like the doc was popping a cyst. Gross!
Since then, things have improved quite a bit every day. There is still a hard spot (small) behind my left testicle, but they said that would take time to heal. My doc also cautioned that I may have to have the cath in 2 more weeks after my initial follow up. Apparently patients that had strictures after hypospadias repair as a child tend to need the cath in longer to help it heal. Fistula are also more common.
On June 8 I went for my retrograde urethrogram. Doc said it was 80% healed, but there was a spot that was still open. Small spot, not sure of the size. Anyway, the stricture area looks good, but I have a fistula (where doc thinks the sutures came out after the hematoma since it was in that area). He left the cath in for 2 more weeks, and I go back on Wednesday for follow up #2. He’s going to do a scope and another RUG. Hoping I get good news, but he also said sometimes it requires another surgery. Not as intense, but they open the Perenium and go right to the spot and add more sutures. He may also use the tunica vaginalis flap if he finds it was a blood flow issue. He had mentioned that might even get used during the initial operation. However, he said it looked good when he got in there and thus he didn’t use it. Apparently that flap (comes from your testicle) can aid in circulation which is helpful in situations where blood flow to the surgery site isn’t great. Kind of wishing he would have done that now! I’ll know more in a few days!
Anywho … I’m posting specifically because I was wondering, Chris, if the spot where yours was open in the initial RUG healed on its own. Was it a fistula?
Some other questions:
1. Did any of you have follow up surgeries to repair fistula or the area where the graft didn’t heal together completely? If so, what was your result. I’m scared to have another surgery because it might not work. I don’t know how much longer I can do the cath thing. It’s embarrassing when you’re 24! Btw, I have just a foley in, no SPC.
1.2. If you did have a fistula, were you able to go without the cath to let it heal? I’m guessing this is not an option as I’ve not found much online about it, but i’d really like to be cath free for a little while before i have another surgery ( in a month or two of the fistula isn’t healing on its own).
2. Did any of you have wet dreams?I’m embarrassed to say this, but I’ve woken up a few times with an erection and all of a sudden things got really tight and I felt like I was cuming. I saw some semen come out around the cath, but this was not fun! I’m hoping it didn’t hurt the repair. Wondering if others experienced this. My doc wouldn’t give me anti-boner pills. Though I may ask on Wednesday of I can’t get the cath out. It wakes me up every night, and keeps me awake at least for an hour usually. And it hurts! I keep it taped up, but that doesn’t help that much.
Thanks for listening. Hope my story helps, and maybe some of you will have answers that could help me too. Let me know if you have questions about my story.
Wow, thanks for sharing your story Ryan. You seem to have gone through a lot. I hope it’s all so much better moving forward. I haven’t had any of the issues you mentioned. But hopefully someone else here has and can provide some insight.
Good luck with the healing and the upcoming scope and RUG.
Cheers!
Ken
Hi Ken,
Thanks so much for all of the great information on this site. I wanted to ask you about your opinion regarding my situation.
I’ve been dealing with my stricture for the past 7-8 years. I’ve had two dilations during that time, and the stricture has obviously come back. I noticed my flow was slowing down again and decided to go to my urologist as more of a preventative measure. He saw the stricture with the scope, and decided to refer me to a specialist.
I saw the specialist yesterday, and he mentioned that I have one of the smaller openings that he has seen. He highly suggested having a urethroplasty in order to fix the situation. Here is where it gets complicated. I have my wedding in early May, and it is a destination wedding in Mexico. I have over 80 people coming, so there is no turning back now :-). The doctor assured me that I would be in good shape within 6-8 weeks, but I am seeing otherwise. He didn’t mention about taking anything from my cheek, so I imagine he believes the stricture is fairly small. I am also very active (run, bike, wight training, etc.) and it is discouraging to think that I am not going to be able to do these activities for so long.
If I have the procedure done in the next week, do you think I will be nearly pain free during my wedding, or does the pain continue for a longer period of time? When can I get back to activities such as running and weight lifting again?
Would it maybe be a better idea to be dilated again, and then revisit the surgery in the next 6 months to a year? Any advice would be super appreciated. Thanks in advance.
-Steve
Hi Steve. I do have an opinion, which I must preface with the disclaimer that I am not a medical professional. But now that’s out of the way – It sounds like you haven’t had more in-depth exploratory scoping or imaging to pinpoint the location and/or estimate the size yet? I wasn’t sure, based on what you said. That information is pretty vital before they even know what kind of urethroplasty would be needed. Your recovery time would likely depend, at least in part, on what type of procedure you have. And often times – there are a couple of recent stories on this site about this – the surgeon will THINK a stricture is small, but reserve the option of taking a buccal graft from your cheek once they cut into you and actually see how big the stricture is. That’s a lot of uncertainty. Also, from all the stories and reports I’ve received and researched, along with my own experience, I’ve learned that recovery and duration of post-operative pain is highly variable. Some guys are ready to go back to totally normal life within a few weeks. Others (including me) needed months before I could say I was able to resume all my normal activities. And the pain in the scrotum lasted almost a year for me (this is not that uncommon). Basically, this is really hard to predict. And based on that, I would recommend you proceed with your wedding and all the festivities BEFORE having your urethroplasty. don’t risk a once-in-a-lifetime event like your wedding on something that is so variable and uncertain. It sounds like dilations do work for some weeks or months (at least) in your case. So that would be my advice. Have a dilation in the next few months. Then try to forget the stricture and enjoy your wedding. Once things have settled down after that, then revisit the whole issue. I hope that helps! Good luck and congrats on the wedding!!
Ken
Hey Ken,
Thanks so much for the reply… really appreciate it. Thats what I am thinking as well. My surgeon’s patients sound like they have great recovery times, but as you mentioned, the fact that it is highly variable concerns me. The doctor did do the imaging test to determine the length, but the opening was so tight, they weren’t able to get the gel all the way through. I wish I looked into this sooner so I could have gotten this over with! My only concern about the dilation is that it may further damage the area/it will close up as the wedding approaches and I can’t have a procedure until 3 months down the line. I’m hoping dilating and self dilating for the next few months will do the trick. I’m likely going to make a decision tomorrow, so I’ll let you know what I decide. Thanks for offering your opinion.
Steve,
How did this end up for you?
Hey Ken!
You mentioned that your strictures didn’t really effect your sex life. I’m just curious how that is possible? If the narrowing is severe enough to hinder the flow of urine wouldn’t there be pain as semen is pushed through the stricture? Or did no seamen even come out in your case?
Adam,
I refer to the surgery, not the stricture. Your concern seemed to be that your sex life would be affected AFTER having urethroplasty. And most guys are able to resume a normal sex life afterward. I also mentioned that there is no one-to-one relationship between how much of a urethra is sectioned out (in an end-to-end) and the length of an erection after recovery from surgery. Now BEFORE having surgery – a stricture can, for sure, affect your sex life. That’s only one of a number of problems caused by a urethral stricture. Sorry for any confusion.
Ken
My stricture was caused by a cystoscopy I underwent. Do you think it is possible for the scar tissue to slightly fade over time? Generally scars of all nature fade gradually but I’m not sure if this applies here. (Btw I know your not a medical professional:), you just seem to know a lot more than your average person about strictures)
Ps I must say I admire the time you take to thouroughly answer everyone’s questions. Not many would do that . Youre the man.
Thanks Adam! I don’t know about the difference between different kinds and locations of scar tissue and how all that affects whether it fades or actually grows. What I do know is that my own stricture (and by extension, many others) grew gradually over time. I’m not sure if it’s related, but I just had a small growth cut off the palm of my left hand. It was NOT a wart. The docs seem to think it was my body’s response to a small bit of foreign tissue, like a splinter or something, that got in there when I was a kid. this little circular “dot” just grew and grew – very gradually – laying down more and more tissue over the years, until it became a nuisance. It wouldn’t surprise me (in my non-medical-professional opinion) if whatever the thing was on my palm was very similar or the same as what made up my stricture.
Thanks for your kind words! I just want to create a place with some answers like the ones I was looking for when I first came home with my diagnosis and SP catheter. There wasn’t much out there at that time. So hopefully this site helps fill the void. I’m so glad people find it helpful!
Cheers!
Ken
Son in other words it’s not possible for strictures to improve over time with no treatment? They only get worse?
That’s bad news 🙁
Adam,
I don’t (can’t) know that for certain. I’m only saying what happened with ME. And I know you are aware I’m not a medical professional, but for other folks out there – this is the kind of thing where it is important for folks to REALLY know that. Urethral strictures are USUALLY made of scar tissue, yes. But they don’t HAVE to be. The term “stricture” refers to the narrowing of the pathway regardless of what causes the narrowing. There could be other reasons related to disease or other types of trauma. So don’t interpret my statement about my own stricture, or my parenthetical note about by extension meaning “ALL others,” to mean that these strictures NEVER get better on their own. It’s much better to ask your doctor (especially a urologist) about this. That way you can be referring to your own case, which is what is really important to you in the long run. I hope that helps.
hi just checking in 10 days after my catheter was removed, I saw the consultant on Wednesday just for a check up and all is well,have a follow-up appointment in two months time for flows.
my flow is staggering I have never urinated like this in my life! swelling and general perfusion of the whole area is a lot better now. nurse colleague of mine recommended trying ginkgo biloba ( A high potency strain) once-a-day, and in my instance it has helped bring the circulation back to all my extremities.
i’ve got some post VoID dribbling but not masses, nothing a decent shake won’t get rid of !
I had some and still have some leakage if my bladder gets full, The surgeon advised me this is quite normal owing to the location of the stricture and difficulties they had doing the end to end as apparently the structure was so narrow it was difficult to differentiate my urethra!
i’ve been doing pelvic floor exercises each day and things are improving slowly like I say it’s not masses just an annoying pre leak if I feel that my bladder is full! surgeon said to exercise and give my bladder time to adjust as its been used to having to push like hell for years!
sorry to be blunt but I’m sure if you people will want to know, my penis looks a lot happier now I really was panicking a few weeks back thinking it was going to be a mangled mess for the rest of my life! was told to avoid sex for 3 to 4 weeks after the catheter was out bearing in mind the catheter had been in six weeks I was really sore down below! without being too graphic I woke up in the middle of the night and found myself taking it for a test drive…. managed to hold off but the next day was a bit sore! but at least I know it’s still working!
still got the annoying scrotal pain! which if you’ve had it is really irritating as she almost feels like there is something wrong but when you check your scrotum skin looks perfectly normal just feels continually sore/hot/prickly at the base of my scrotum, surgeons also assured me this will go with time.
The biggest positive for me at the moment is that I’m not waking up during the night needing the toilet, and when I do go to the toilet I’m not hopping from foot to foot getting sweaty and straining to urinate. this structure has apparently been with me since birth but only recently got a lot worse and after the failed urethrotomy is grew to a point where if i had left it longer it would have apparently closed over.
it’s great to be out and about in the fresh air specialist bring round a corner even if it is freezing here in the UK on the south coast!
i’ve avoided alcohol completelt because of the leakage at the moment and I don’t really want any diuretics give me the extra urge to go but my treat myself to a glass of decent red wine this weekend!
for any of you in the recovery period and still catheterised it does get better, for a few weeks I thought the pain would never go away and really got me down.
so fingers crossed I’m over the worst of it and that #### stricture does not come back , if you are interested I had about 1 to 1.5cm removed. i’ve not noticed any shortening, erections are rather tight feeling and I now seem to be pointing directly outwards as opposed to upwards! frankly that’s the least of my worries and at 41 they say a change is as good as a rest!!
all the very best to you all and thanks to Ken further such a good site I’ll keep you posted and drop in every now and again if anybody wants to ask anything please feel free
chris 😉
Thanks Chris! That’s a fabulous report. Im so glad to hear things are going well. I hope you enjoy that wine this weekend;).
Cheers!
Ken
Ken,
Thought I would give you an update. I am still in the recovery period with 2 caths. Tomorrow, Monday, March 9th will be 3 weeks from surgery. I was scheduled for the RUG on Tuesday the 10th but the doctor had a surgery come up and the only workable option was to wait a week until the 17th. Ready to get rid of the tubes. Things seem to be going ok, reduced pain meds, scrotum discomfort has reduced. Sill sitting with weight of perineum in my recliner on a pillow.
DennisT
Thanks for the update, Dennis! Good luck on your upcoming tube removal – though I’m sorry it got delayed. Still, it’s going to be a glorious thing to look forward to:).
Cheers,
Ken
Ken.
Well here we are 4 weeks and a day past surgery. I went to the urologist for the RUG. I have had a SPC for going on 7 weeks, 3 weeks prior to surgery and 4 weeks after. And since the surgery I have also had the urethra cath that was caped and taped to dressing over the SPC. Since surgery minor discomfort has been managed with Tylenol and a daily percocet.
Longer story shorter, the RUG showed a great picture. My surgeon first removed my urethra cath, hurt like hell. Then she filled the bladder with contrast with a large syringe through my SPC. I voided and she was pleased with the pics. Since then I have urinated several more times with some discomfort in the penis and a couple of times in the bladder after. The bladder discomfort may be spasms or reaction to SPC. Also, several times as the stream finishes there have been some sputtering, but without urine.
If things go well the next few days, the SPC comes out. Then I see urologist in 2-3 weeks for a follow up. See her again in 6 months for a cystoscope. My doctor, who I recommend, is Dr. Brooke Edwards in Crestview, Kentucky which is just south of Cincinnati. She was trained At East Virginia University in the Norfolk area where they focus on urethreal reconstruction.
More info as things are remarkable.
Ken or anyone
I am to have the spc taken out the next couple of days. Can you share how long it takes for it to heal over?
Thanks!
Dennis
Hi Dennis. It’s pretty darned fast. It actually starts healing shut in that area in minutes if you’ve not had it very long. I had mine in for about 6 months, and during my last cath change, they said after this amount of time, they didn’t need to drop the guide wire in because it would be fine for at least 15 minutes before it started to heal. But still – that’s pretty fast when you’re talking about removing it permanently. They’ll put a bandage over it and tell you when you can remove it (probably just a few days) and how to care for it and all that. And you’ll have “a 2nd belly button” for awhile. I still have mine:).
Hope that helps.
Ken
Dennis, you’re probably right about the SPC causing the discomfort. I was lucky in that when they did the surgery, they removed the SPC and left only the urethral cath in. So they used that to “pour” the contrast in. And it felt funny, but didn’t hurt when they removed it. Sorry to hear you had THAT pain.
Good luck with getting catheter-free soon!
Ken
Ken
I had the SPC out yesterday, Friday 3/20/15. I do think the spc caused badder spasms at the end of each urination. The dr thought the spc also caused me to not fully empty my bladder. SPC is gone now. There is a bandage over the spc former entry. Dr said just change bandage when shower. It is good to be tube free and urinating in my own again. They did give be a prescript of antibiotics for a week. My Urologists are great: Dr Brooke B. Edwards out of Crestview, Kentucky and Dr, Daniel Robertshaw from Hamilton, Ohio in case anyone is looking for recommendations. Edwards is the surgeon that did the urethroplasty.
I will follow up with updates.
Dennis T
Thanks so much for the update and the information for folks in the Ohio area! And I’m glad to hear you’re tube-free and doing well:). Please do keep us updated. Good luck moving forward.
Cheers!
Ken
Ken
I have a question for you. After you had your caths out did you have an adjustment time with your bladder? The reason I ask, I can urinate 200-300cc and then in an hour and a half or two have to go again. Dr said the RUG was good and my bladder had been stretched and had a couple of verticuli. I have a strong stream but it is quick and ends quick. I am going to see another urologist in my dr’s practice tomorrow to see if I am getting much residual urine left in my bladder tomorrow because I can/t get into my dr for about 10 days.
I wonder if since I had been cathed for 9 weeks if my bladder has to be somewhat retrained?
Did you experience anything similar?
Thanks
Dennis
Hi Dennis. That’s a really good question. When I used the just the valve cap and not a bag, I was definitely going every 45 minutes to an hour, and was told my bladder had been resting for so long (like 5 months at that point) that it would take awhile to retrain it. But once the surgery was complete and all the catheters were gone, I was able to go the normal 4 hours or so immediately. However, that is apparently not the case for everyone after having a catheter. My mom (who was about 70 at the time) said that after just one surgery lasting a few hours where she had a catheter, it took her almost a year before she was able to sleep through the night again. So I think it’s just one of those things that depends a lot on the individual. You should definitely ask the urologist you’re going to see tomorrow though. Hope that helps.
Ken
Ken,
I’ve been plagued with recurrent urethral strictures, brought about by radiation treatment for prostate cancer, for the past several year and have undergone 3 laser cystoscopies, hyperbaric oxygen therapy and both hard and soft dilation. I’m currently facing yet another laser cystoscopy while I find a specialist to discuss the possibility of a urethroplasty. And that brings me to my questions: Who are the best specialists? Where are they located? I do not have VA benefits and live in south Florida. Any help here would be greatly appreciated.
Allan,
It sounds like urethroplasty is definitely what you need now. Unfortunately, I am not aware of all the good urethroplasty suregeons out there. Did you try the forum here? And since lots of people check the comments here almost like a forum — Is anyone else aware of urologists in south Florida with urethroplasty experience? A quick check on Google led me to one name – DR. ANGELO E. GOUSSE, MD. I found an entry in Yellow Pages with a review from a patient who had a urethroplasty by him. Here is that link – https://www.yellowpages.com/miramar-fl/mip/dr-angelo-e-gousse-md-457900490. But you should absolutely make sure you check more official sources than this, such as the Florida state practioner profile here: https://www.floridahealth.gov/licensing-and-regulation/practitioner-profile/. You can click on the link to search a doctor and it gives you a detailed form you can fill in, including specialty, etc. I put Dr. Gousse’s information in and it shows his license is “clear and active.” Also, you should try contacting the Florida Department of health at 850-245-4444. Keep in mind that I have not experience with this person. I just found him doing a google search of “urethroplasty surgeons south Florida.” Hope that helps!
Ken,
Thank you for the reply. I’m actually reaching out and researching in every direction to get as much info as I can. I’m doing a more thorough read of the Forum and making inquiries everywhere. I’ll post whatever I can find out.
Thanks Allan! I appreciate that. Good information for folks going through this is what the site is all about.
Cheers!
Ken
Ken
I went to the urologist Friday and when he looked at my stoma, there was a piece of skin the shape of an inch worm there that was not letting it heal. The doc got some liquid silver on a q-tip and applied it to the skin and after a while it started to sting. Changed the bandage that Friday night and could still see the silver, not much oozing out. Saturday night we changed the bandage and there was a fair amount of reddish brown stuff that had come out of the stoma on to the bandage. he originally told me they do not stitch those closed as they need to body to expel the bacteria. I tried not to have bacteria in there.
I am still voiding frequently, every one, or two or three hour/s. Averaging more or less than 200 cc’s per void. Had a post void sonogram friday and still had about 150 ml in bladder. Not happy about that. Normal depending on age is below 50 or if over 65 years old, 100 or below. The bladder according to the surgeon had suffered some damage (verticuli) due to the stricture back pressure. Stream is pretty good though it just does not last long.
Not sure if the void issue is a result of the banged up bladder, inflammation, stoma issue. My surgeon is out most of this coming week and booked while she is there, but I am calling tomorrow and begging to get in. Otherwise I have an appointment in 12 days.
Dang, I was expecting to void like a 20 year old man when those tubes came out, not 60, but I am 60 in a couple of months.
Wish someone had gone through my same experience and had a happy ending.
Sorry to hear about that, Dennis. I think I see why my surgeon insisted on 3-6 months of “bladder rest” before he did my urethroplasty. So I had to have the SP catheter in from Feb 8th until the surgery in July of 2013. That is a LOT longer than most doctors are waiting. But if there is a chance that the bladder could be damaged from all the back up, it makes sense to let it heal up or at least prevent further trauma before doing the surgery. I am only guessing at this, but maybe it makes sense. How long did you have to wait from the time they put in the first catheter until your urethroplasty?
I hope you get this resolved soon!
Ken
Ken
The damage to my bladder, the two verticuli were found during a ct scan prior to the first urologist finding the stricture via a cystoscope, so that was probably 3 years ago. Then I had a urethrotomy. Peed great for almost 3 years. I started noticing stream reduction this last November. Saw a surgeon in December. Cathed in January, five weeks before the urethroplasty. At times I get a glimer that things are getting better, I am waiting longer before voids and the voids are increasing in volume. So there is hope.
5 weeks is a pretty long while. So yeah, it sounds like your first theory was right.
Thanks for the clarification.
Cheers!
Ken
Ken
Went to the urologist yesterday. All is well. Bottom line, back to voiding like a big boy.
After the urethra cath was taken out I was left with the spc for 2-3 days. Whenever I voided naturally while still having the spc it caused bladder spasms. When the spc was removed it took several hours for the bladder spasms to stop.
For the next several weeks bladder was extremely sensitive( again maybe from have one or two caths for 9 weeks), I felt the urge to void every one to two hours which of course took me mentally back to before my first uretherotomy. I started logging when and how much I urinated, did that for 3 weeks. I was convinced that the surgery had failed.
Then yesterday the urologist explained that I had a couple of things that we will have to see if some of it resolves over time. The firs, as I may have mentioned before, there are two diverticuli on my bladder, bubbles, or blow outs from having too much pressure in the bladder caused by the original stricture. The diverticuli has pushed between the muscle coating of the bladder creating weak places where I can not contract. They can operate laproscopically if there are uti s in the future or it causes me to have to much residual urine after I void. The other issue is having two caths in the baldder, the bladder has to retrain itself.
Now I am voiding just fine, nice strong stream, and times in between voids are increasing. Life is good!
Thanks for the update, Dennis! So glad you’re peeing “like a big boy:-)” Best of luck with the diverticuli and bladder retraining.
Cheers!
Ken
Hi all, just found this thread.
I underwent this procedure at Lahey earlier this month with Dr. Vanni.
I also had a stricture that I’d been dealing with for about 30 years.
I had had 2 previous dilations that didn’t “stick”; within a month of each, the condition had reverted, maybe slightly worse. I waited for years hoping the science improved… in the late 90’s the state of the art as described to me was to remove the strictured area and join the ends. Sounded bad to me. Glad I waited.
In terms of my experiences post-op:
– most pain was in my cheek. Had to stay on pain meds longer than anticipated. Given the new laws surrounding narcotics, getting a refill was a bit of a chore, not helped by my proximity to the Burlington (MA) Lahey clinic. Dr. Vanni came through though and I was able to get the meds.
– the catheter experience was familiar to me, and it was about the same. Annoying, hard to sleep after a week or so, bladder spasms. Hate that feeling when the hose gets pinched or a large column drains quickly (like in the morning). Not painful, just uncomfortable.
– 3 weeks post-op I went in for the VCUG. Wow that sucked. I was unable to ultimately perform… stage fright I guess. Didn’t help that the guy doing the test was like “you ready? you ready?”, nor the nurse standing there. Yanking that thing out hurt like hell. I’ve had Foleys before with my prior dilations but this one was easily twice as painful.
– i drove myself to and from the VCUG. I guess I have good seats in my altima as it wasn’t an issue at all.
– still on a holding pattern for sex and doing stuff. Like others have said, no biking/ATV use for 6 months. I’ll start going to the gym in 3 weeks as I am a wanna-be bodybuilder. Hard to stay inactive… really hard. I’m a very active guy so this is the toughest part!
– stream is awesome. But I am skeptical, mainly because of my failed dilations in the past… I know it’s not a fair comparison but it is in my mind. I had great stream for weeks and then within a month, back to slow stream.
– feeling some bladder cramping towards the end of evacuation. After years of issues, I have my own set of ‘tricks’ to deal with it, including slowing my stream with my bladder towards the end when it would really start to hurt. He says need to recondition the bladder,which makes total sense to me. It’s like any other muscle i guess. Need to practice peeing like a human again!
I’ll report back also as time goes on. Very optimistic. I have to travel in a couple of weeks for work (plane), so that will be interesting.
I have a very cool boss and the type of work (programmer) allowed me to rest at home. This is big… plan on not doing much for a good 3 weeks.
Thanks for your story Bryan! I think you’ll find this repair works better than the dilations, but I totally understand the feeling you have. You need to experience the lasting improvement before you trust it. Thanks so much for the details you gave and the name of your doctor. That can really help folks who might be in your area, or be able to get there.
Good luck and YES, do please share your progress with us.
Cheers!
Ken
Hi Guys, just checking in, 4 months post op now, alls good, my life has changed completely, still some annoying dribble post void and the eternal ‘ scrotal’ inferno pain is still there, though seems to be going away with time…. sex wise…. no worries….. to be blunt was worried i wasnt firing at all to start with but its getting better with time! ….. its so good to be able pee without stress….. stress incontinence and control is also back on form…. was a while where if i got busting for a wee id lose a small amount before i could get undone, but even thats pretty much gone, had a few beers last weekend and bored my friends with my ‘ listen to me peeing its amazing lol’ …. its wearing thin now! …. have a follow up with the consultant on 25th and am looking forward to it….. just a hint but i used l-arginnine and gingko tablets for a while to get the blood flowing again( check with your gp pls) but worked like a cracker for promoting blood flow back to the nether regions for me….. nighttime erections are back and all is well…. sorry if thats all a bit sex related but at 42 i was concerned id never function again for a bit! lOL
ALL THE BEST…to all of you…. and give it time….. dont get hooked on the setbacks and enjoy the results
chris
Thanks for that update, Chris! I’m so glad to hear things are going well.
Cheers!
Ken
I SAW DR. GOUSSE YESTERDAY. HE WILL BE PERFORMING A TRANSURETHRAL RESECTION OF THE BLADDER NECK CONTRACTURE AND THE AN AUS SIX WEEKS LATER. ANY INPUT ON THESE PROCEDURES WILL BE APPRECIATED. MIKE
Michael – thanks for your post. I, personally, don’t have much knowledge to help on this. But maybe someone else will? You can also try the forum on this site.
Good luck!
Ken
I SM NOT S GOOD CANDIDATE FOR RECONSTRUCTION BECAUSE I WAS TREATED FOR PROSTATE CANCER WITH BRACHYTHERAPY AND EXTERNAL BEAM RADIATION. NOE HAVE RADIATED TISSUE. POOR BLOOD SUPPLY.
Hello Ken!
I was wondering what the differences between the end to end and the buccal mucosa graft procedure are in terms of success rate and possible complications? I’ve noticed a lot of people saying that the end to end method is more effective, but I have also read that with that method you lose penis length. This is a huge concern for me because I’m 20 years old and not exactly happy with my size as it is, and can’t afford to loose any inches.
Thank you
Hi Adam. In general (remember my disclaimer – I’m not a medical professional), but slight shortening of penis length is usually listed as uncommon as a side effect of end-to-end (with or without the graft). Check out this article from the Charleston Area Medical Center, which should shed some light – https://camc.org/urethroplasty-for-urethral-stricture. The different between a normal end-to-end and the end-to-end with graft is simply that (this is how my surgeon explained it to me) if they can pull and stitch the two remaining healthy halves together after cutting out the stricture easily without overstretching it (they make that decision usually after they get in there and see for certain how much needs to be cut out), that is preferable and they do that. But if they deem that the distance is a bit too far to pull the two ends together without risking the side effects of shortening or curvature, they will help bridge the gap with the buccal tissue. I’m sure there are different ways of doing this, but my surgeon said thy would pull together the ends of the urethra at just one point and stitch that, leaving the rest of the “circle” open around the sides. Then they use the graft tissue to cover that gap, putting less stress on the entire cross-section of the urethra. I hope that makes sense. If you were told you’re a candidate for end-to-end, you are probably pretty darned safe on the “shortening” front.
Hope that helps!
Good luck!
Ken
1) Do you know which is generally more successful in terms of overall success and risk of complications? It seems like the end to end is more of a sure bet
2) Wouldnt cutting out a portion of any length out of the urethra result it shortening? I would think that if for example 2 cm is cut out, you would lost roughly that much length. Is this wrong?
Thanks again for the quick responses as always!
Adam,
As odd as it may seem, removing part of the urethra does NOT result in a corresponding shortening of an erection. This is because the urethra is extremely flexible and “stretchy.” Of course if you remove too much of the urethra, there will be problems with shortening and/or curvature. But that’s why your docs would not perform an end-to-end if too much of the urethra needs to be removed. Also, the buccal graft is used for two (usually) different types of urethroplasty. The Buccal Mucosa Onlay Graft (BMG) is NOT an end-to-end. In the BMG, the idea is simply to widen the urethra where the stricture lives. So they make an incision in the area and widen it with the graft. The end-to-end, as you know, cuts out the section where the stricture is and sews the 2 healthy ends back together. HOWEVER, there is a version of the end-to-end where the 2 ideas are combined. This is usually called something like a graft augmented anastamosis. “Anastamosis” (which just means surgically connecting stuff in your body) is the term usually applied to the end-to-end surgery. In this blended version of the end-to-end, rather than pulling the entire cross sections of both ends together and connecting them, the surgeon would pull the ends together only at one point (like the 3 o’clock marks) or a small section (like 3 o’clock to 6 o’clock) and connect those. Then they would use the graft to connect the rest of the cross-section, putting less stress/stretch on the urethra. Does that make sense?
It sounds to me like you’ve been told you are a candidate for end-to-end, which is good news because it means your stricture is probably very small. But just in case they get in there and find that the stricture is bigger than they thought, they might want to augment with the graft to put less stress on the repair. So they will often tell the patient as a matter of course that there is a possibility they MAY need to use a graft.
I hope that helps clear things up.
Ken
Hi Ken!
How is a urethroplasty possible if the structure is located under the scrotum. Like the area of the urethra closer to the base of the penis? I assume the perennial approach is not an option in this case since the narrowed portion won’t be in reach.
Paul, I’m not sure what you’re asking. But basically the area close to the base of the penis is exactly the area they use the perineal approach for. It’s a pretty long journey from the perineum to the urethra, which is why there is often so much pain for so long after it’s all done. And part of the procedure is to pull the scrotum and contents well back and out-of-the-way via a kind of clamp, which will leave a funny set of markings on the scrote afterward:-P.
They go up through the perineum, hook the urethra, pull it away from the surrounding tissue and down to access it. Then they do the resection after cutting out the stricture. Now, I’m not a medical professional, so this description is over-simplified. But it isn’t far off.
I hope that helps.
Ken
I know that they make the incision between the scrotum and anus but if the stricture is closer to the base of the penis then wouldn’t that be in the penile urethra? I thought the perennial approach was only for those with bulbar strictures
Paul,
I must have misunderstood. I think you’re right about that. The bulbar strictures are the most common ones for perineal approach. Were you told you were having a perineal approach? If you’re just curious, the main way to approach a stricture at that location (a “penile urethral stricture” – or PUS) is a direct approach. They would likely just go in through a ventral incision of the penis. Hope that helps.
Ken
No problem thanks for responding! I had an ultrasound that found that I have a stricture just slightly further up than the base of my penis. It’s pretty much located where the scrotum is. My urologist didn’t seem to know much about the topic honestly and said he doesn’t perform urethroplasties. He recommended a dialation but I’m gonna hold off on that . I’m gonna see another urologist and get his opinion but it seems like the location of my stricture is not ideal from what I have read. Making an incision through the penis sounds much more problematic than the perennial approach bytbthen again I can’t find much info on it
Paul, I just did a fair amount of research on the recommended repair for penile strictures – in the part of the urethral called the “pendulous” urethra. The 1-stage urethroplasty recommended for that seems to be one of 3 kinds: the “Orandi technique” which uses a skin flap, the muccosal graft, or the skin graft. It looks like end-to-end excision and anastomosis is not recommended for penile strictures due to the higher risk of penile shortening. In any case, yup – they gotta cut into the penis. Hope that at least helps point you in the right direction for more info.
Good luck!
Ken
Ken,
Do you have to sit and urinate now because of the perineal urethroplasty? I read that through this approach they make a permanent opening in the perineum where you have to urinate…
No Schuyler. The perineal approach is the standard way to do all urethroplasties that are in the bulbar region. They just go that way to grab the urethra, pull it down to work on it, remove the scar tissue and sew it back together, and put it back up and in where it belongs. Then they put a catheter up through your urethra for 2 weeks or so and when it’s removed, you pee through your penis as normal again.
Hi Ken,
I found your blog when I was trying to get information about urethroplasty, when I was dealing with doctors who didn’t understand the issue and were trying to push me toward repeat urethrotomy. Thanks for making the effort to get the information out there.
I’ve just started my own blog about my experience of my recent buccal mucosal graft urethroplasty. It seems there aren’t so many guys out there with strictures in the pendulous urethra (or at least, without hypospadias) and it’s very difficult to find information about surgical options, I’m hoping to do my bit to change that. If nothing else I’m including before and after pictures to give people some idea of what they can expect in terms of appearance.
I just got rid of my suprapubic catheter yesterday, so I’m enjoying being able to pee normally again. I hope things are still going well for you.
Thanks! And yes, it’s a good thing you’re doing. I felt so “at sea” when I got home with my catheter and my diagnosis. Nobody – even the medical community – seemed to have any light to shed. So the more folks that come after us can benefit from our experience, the better:-).
Cheers! And congrats on being cath-free!!
Ken
I have suffered with a stricture for 15 years .I am 43 years old have had several surgeries like cutting the scar to get it to expand only with no success . Multiple dilating over the years . It has been a beast to deal with . I finally found a urologist who gave me a referral to a surgeon . Who took an ex ray and planned on surgery . He wanted the scar to close as much as possible . Before the exray. To see what options was best. We’ll last week I had end to end surgery where the scar was cut out and ends put back together . I have a cathater and it will be in for about 3 weeks. I’m looking forward to having this problem far behind me . I’ll keep you posted on my recovery .
Thanks for your post, Maynard! I think your 15 years of dealing with the stricture are going to be all but over soon:). As you probably know from all the stories and posts on this site, recovery from this surgery can be a bit of a long journey in itself. But it’ll be worth it for you after all these years.
I appreciate your sharing with us. And yes, please do keep us updated. Good luck moving forward!
Cheers,
Ken
Yes things are better now it’s been about a month and half since surgery . So far so good . The cathater for 3 weeks was rough especially working trying to provide for a family of 5. But physically now on road to complete recovery .
Well end to end was Feb 16th. Tubes came out 4 weeks later. mot necessarily smooth sailing since. I have diverticulum on the bladder that may be posing problems. The problems are mostly incomplete voiding and weak streams at times. Surgeon scoped me the end of april and said all was well. But more problems started the end of May. Residual is anywhere from 75- 200ml. Surgeon said she was comfortable with up to 200 because of the diverticuli in my bladder not emptying all the way. I know that she did an end to end and she said it was routine, and said it was about 3 cm, come to find out it was more like 3-4 cm. We will see what the VCUG shows. I also have an appointment with my gastro dr. because I am told IBS may cause voiding issues because some of the nerves are shared by both processes. I have also made an appointment in Indianapolis at IU Health to get a second opinion from a much more seasoned surgeon that does urethroplasties and did his residency and was chief resident at the Lahey clinic. Geeze! Anyone have any recovery issues like these?
Hi,
Great website Ken – I have been reading it all through my recovery and it is a great resource to have available. I just thought I would share my story.
I am currently 37 years old living in the United Kingdom. In early 2011 I was finally fed up with years of reduced urine flow and post void dribbling which smelled fishy and stung like hell (UTI I guess). I went to see my GP and her first thoughts were Sexually Transmitted Infection so I was sent for tests which all came back clear.
She then referred me to a urologist who carried out a flexible cystoscopy examination which identified a stricture right near my bladder. In October 2011 he carried out a DVIU, which entailed one night in hospital and a catheter for 24 hours which was removed when I was discharged. I then had 2 weeks for recovery and then was taught to carry out intermittent self catherisation (very scary at first but you get used to it quite quickly). This was once a day for 6 weeks, then every other day for six weeks, then twice a week for 6 weeks followed by once a week for life! The urologist who carried out this procedure was very good but old school and thought this was the best way forward.
On my one year follow up I saw a different urologist. He said I was a young man and probably did not want to self catherise for the rest of my life (too right!). He told me to stop self catherising and come back in six months and he would see if the stricture had returned. It did indeed return and he said that he would carry out another DVIU to get ride of the stricture while I considered my options. My second DVIU was carried out in October 2013 and followed the same path as the one in 2011.
In May 2014 I went to my 6 month follow up and was referred across to a specialist urological reconstruction surgeon. This urologist is fairly well known as he appears on a famous UK television show giving urology advice and showing the procedures to cure “embarrassing problems”. He is also known for carrying out urological reconstruction work on injured members of the armed forces when they return home with bomb blast injuries. Apparently there are around 600 urethroplasty operations carried out each year in the UK, of which half are carried out by three surgeons. This surgeon is the most prolific, carrying out around 120 a year, so I was confident I would be in good hands! I was told to stop self catherising until I had been to see him.
I saw him in September 2014, prior to which I had urethrogram, and he carried out another flexible cystoscopy which showed the stricture had returned. He estimated it to be around 6cm and located right near my bladder. He explained that a BMG Urethroplasty was my best option As I was not an emergency and could still urinate easily (with reduced flow) he said there would be approximately an 8 month wait, which did not concern me. He told me to stop self catherising unless required.
I had my urethroplasty carried out on 30th June 2015. I went into theatre at 9am and was back on the ward at 1:30pm so it took about 4.5 hours. I was prescribed total bed rest for two days after which I would be discharged home. There was not much pain for those two days in hospital just a lot of discomfort. My mouth felt raw but numb (they stitched the cheek up – there a 50/50 split as to whether it should be stitched or not) and I was able to eat on the other side of my mouth at 5pm, although I was not feeling hungry. My throat and nose were also sore, as they had put a pipe up my nose and down my throat into my chest. The anesthetist did tell me to expect this when he saw me prior to surgery so I was not worried. At around 7pm I felt sick, light headed, and my blood pressure dropped. This was cured by some fans (this was a very hot day by UK standards), water and propping up in bed. I was told that my blood pressure was lowered during surgery and this bout was probably caused by the remnants of the drugs that were used. I was given paracetamol and co-codamol three times a day for pain, mouthwash three times a day to numb my mouth wound and some antibiotics. I was also given blood thinning jabs once a day for two days.
The day after surgery the doctors came to see me. I was told that the graft was 3.5cm and not 6cm as they originally thought. They said the surgery went well and I should stay in bed until the next day when I could start moving around. Thankfully, they said if I required a bowel movement I could be wheeled to the toilet (I did not fancy the thought of a bedpan!)
In preparation for the operation, my pubic area was completely shaved, as were the tops of my thighs. This was strange when I saw it for the first time!
On 2nd July I was discharged home. I was told that I would have a catheter in for 21 days (from operation date not discharge date) and to come back to the hospital on 21st July to have it removed. I was taught catheter care and how to clean my operation wound. I was given a supply of single use catheter night bags and wound cleaning materials. I was told that my leg bag would require changing once a week and this would be carried out by the district nurse. I was given all the medicine required and then waited to be picked up by my family. The first few times I stood up I felt a bit light headed but this soon passed. I mentioned to the doctor that I had not had a bowel movement for three days and he prescribed a suppository which yielded small results! I was given some senna tablets to take to aid bowel movements.
At around 4:30pm on 2nd July I left hospital. The walk to the car was uncomfortable and I felt hot and bothered. The journey home took an hour and this was very uncomfortable. I had to sit in a strange position to take the weight of my wound.
My first proper bowel movement happened on the 4th July. I believe a combination of anaesthetic, drugs and a fear of going contributed to this long length of time. By this time I was very bloated and in a bit of pain. When I got home I was eating a lot of stewed fruits, prunes and taking senna tablets. I was also drinking a lot of water. When it came it was a big relief but felt very strange. My stomach shrunk a lot afterwards! I would advise people to stock up on prunes and stewed fruit to help them along.
The next 19 days went by very slowly. I did not have much pain from my mouth or operation wound. I took painkillers for 5 days as prescribed and finished my course of antibiotics. The mouthwash also helped.
The catheter was my biggest headache. At times I forgot I had it, but when trying to sleep, move around, or take a shower you are always aware of it. I was constantly checking that it was not snagged, was not blocked and that it was secure to my stomach. On the last point, my doctor advised that it should always be attached to my stomach to stop it moving around. I went through a lot of fixing tape to ensure this, as it never stayed attached for very long. Occasionally, I would feel it scratching my bladder which was not very nice.
I had one occasion where my bladder was feeling very full, I felt urine in my urethra, and the bag had not filled up for a while. However, when I had a bowel motion, some urine shot out from around my catheter and my bag filled up in about two seconds. I was not sure why it happened but it occurred a week after hospital discharge, so I spent the next 12 days worrying if it was happening again (it did not).
Sitting was not pleasant. I had to shift all my weight onto my backside and this caused a numb backside frequently. If I sat in a wrong position, I could sometimes feel my catheter pushing which was not a nice feeling. I either laid down or stood up (I preferred to eat food standing up). I could sit for about 15 minutes then would feel uncomfortable. A friend gave me a useful tip. If you do not own a doughnut ring, just take two cushions, fold them in half and place then under each butt cheek. This does work well!
I did not find showering very easy. I could wash my top half easily but was difficult washing in the area of the catheter and scar. I also found it difficult to reach my lower legs and feet to wash.
Sleeping is hard as you can only really lie on your back. I was constantly checking to see my leg bag was draining into my night bag. A couple of nights I dozed off without attaching my night bag and awoke to find my leg bag full to bursting point. This is not good as urine will stop draining so learned my lesson and built the night bag connection into my routine.
I was woken by night time erections, but these were uncomfortable more than painful. I did ensure that the catheter was lubricated with antibacterial ointment and that there was some slack when attached to my stomach. The catheter gave the impression that my penis had a kink or bend it which worried me as I read this can happen after urethroplasty. However, once the catheter was removed it was fine. The catheter also made my penis look smaller, which again I was worried about but again resolved when the catheter was removed.
I generally followed the advice of drinking lots and lots of water, eating lots of fibre, resting as much as possible but keeping mobile occasionally, always securing the catheter to my body, and also following the hygiene advice.
My catheter was removed on 21st July. I had to wait until I voided and then they measured how much was left in my bladder (27ml which is good). My stream was strong and is getting stronger each time. I have a bit of dribbling at the moment but this is getting less as my muscles re-engage. I am happy to have such a strong flow and be catheter free! I have a follow up with the doctor in October.
My scar is healing well. There is a bit of scar that tucks into my thigh / butt cheek that does not see any air. This bit is still very red and tender. The doctor says it is fine and it will heal with time and that I should check to see if there is any infection.
As reported here, by balls are a numb in places and sore when moving around occasionally . Tight supportive underwear do help. I would have been worried if I had not read it on here. If it gets worse I will consult my doctor.
I was told that I could drive 3 weeks after surgery, gradually commence physical activity 4 weeks after surgery and travel 4 weeks after surgery. I drove for the first time on 24th July (24 days post operation) and it was fine. Today (27th July) I drove a 60 mile journey without problem.
I forgot to ask the doctor about sex, but the urology nurse who removed my catheter said I could commence a few days after catheter removal but to take it slowly. I e-mailed my doctor to check this and today (27th July) he confirmed I could resume sexual activity.
Hopefully the worst is over and the rest of the recovery is plain sailing (fingers crossed).
So that is my (very long – sorry about that) story. I hope people find it useful! Obviously time-scales given here are for my procedure and others may vary but ask your doctor as Ken so wisely repeats constantly.
Any questions please ask me!
Wow Gavin! It has been quite an ordeal. Thanks for sharing all the details. I’m glad to hear that you have had what sounds like a very successful urethroplasty. Best of luck moving forward!
Cheers,
Ken
Hallo Ken,
I first saw your forum on internet a month ago in the city of Nice (south of France). I was there on a holiday and I took an appointment to see the urologist Professor Daniel Chevallier in Nice Hospital whom is supposed to undertake an urethroplasty on me on the 25th September 2015.
Here my story:
1) In 2008, I had a surgery in one of the hospitals of the east of Algeria. The surgeon performed a surgical treatment on me and I thought everything will be all right afterwards. When I was in the coma after the surgery (in the evening) I was screaming of pain at the wee hours. The cause of the pain was the catheter in my sexual organ. Another patient was screaming the same night in the same room in which I was. I saw that his hands and legs where fastened. I thought they do that maybe because he was violent and that it was necessary to do it. Bottom line, he made such a noise that the male nurse came several times to check on him and I called him about my pain but he said it is ok and I have just to ignore it becuse it is a normal feeling after the operation. I continue screaming of pain afterwards and the nurse was asleep so he ignored my calls and those of the other patient as well. I decided to leave my bed and believe it or not I was walking in the corridor of the coma. I don’t know how I could do it. But you can imagine the pain I had that night.
At that time, the bastard of the male nurse (excuse the word) come over and said that I am crazy. He took me back to my bed and rather than loosening a bit the catheter so it reduces my pain; he pull the catheter brutally which caused me pain at that moment and bleeding in the next days.
My parents came the next days and I told them but the chief of the nurses told them that it is OK with the bleeding and that It will disappear after few days (which it actually did).
Concerning the bastard of the night shift, the Nurses’ chief explained to my father whom was mad that the bastard had already left and that the patient of night had given them a heck of night.
I went back home after 3 days in the hospital, they took off the catheter and the bleeding disappeared afterwards.
2) In 2009, I had some trouble when I went to the bathroom to pee. When I peed, I had the feeling that my bladder was not emptied and after few minutes I went back to the bathroom. I remember one day I couldn’t pee and I went to the hospital with my father and they wanted to empty me with a catheter but my father refused so they gave me some medicines and in the evening I could pee again.
I decided to go to another doctor in one of the big cities in Algeria. He thought it was my varicocele which apparently reappears again because, telling the truth, I had a bit of pain as well at that time in my left testicular. The doctor perform a surgery on me again for the same varicocle and after few months I still have the same feeling once I went to pee. The varicoce however was done with, hopefully.
3) In September 2011, I went to Paris to study International law but my main purpose to go there was to put a term to my sufferance. I went to the European Hospital Georges Pompidou and I met the Professor Thiounn there. I saw him first time in the French News but I forgot what the subject was but it concerned urology anyway. I told him all the story and he gave me some exams to do. They discover afterwards that I had a bulbar urethral stricture of 2 cm. To be short I had an urethrotomy in December 2011. Everything was fine afterwards till February 2012. When I had a urinary retention and I couldn’t pee at all.
I went to the emergency and they put temporarily a catheter in my pubis area till I met my Professor two weeks afterwards. On the day of our meeting, he did a dilatation with a fiberscope and he get rid of the catheter. He told me that my stricture reappeared again and that I have to come back to see him every month. I had to comeback once every month to see him so he did a dilatation with the fiberscope. That allows me to have a bit of a normal life.
4) From December 2013 on, after another urinary retention, I met my Professor again and he gave me a straight stick (Bougie droite) to do an auto-dilatation almost every day. That’s what I have been doing for 2 years now (a daily auto-dilatation and a fiberscope every month in my Professor office).
5) I read a lot of paper articles and web sites regarding the urethroplasty. I finally decided to ask about it. I heard and read that there is a 2 famous centers in Arezzo specializing in urethral constructive surgery and because Nice is nearby Italy, I went there to see what I can do about my stricture. I met Professor Chevallier and he told me that because I am young (31 years old), it is better to do an urethroplasty now otherwise I will pee like a woman in 10 years from now. By the end of August I wrote an email to inform my Professor in Paris. I met him after his holiday comeback. I saw that he wasn’t for the urethroplasty. I even doubt that he didn’t like the fact that I saw another Professor. Actually he was different last time I saw him and that surprised me because he gave me finally the permission to go and do the urethroplasty in Nice. However, I still asking myself why didn’t he ever told me about it or advise me to look for it? In my opinion, a doctor looks for the benefit of his patient?!
Anyway, telling the truth I am more concerned about my erections. I don’t have a problem with erections now. Certainly it is better in the first days after the fiberscope dilatation but I don’t complain too much about it. I spoke with Professor Chevallier about the possibility of having erection problems after the urethroplasty but he confirms that as a specialist about this matter, nothing will affect my erection and that everything will be just fine after the surgery.
My surgery will be performed on the 24th or 25th of September 2015 and I am very worried about the next. Please, could you talk more about erection problems after the surgery? I am not married yet and I am very worried regarding the erectile capacity after my very soon urethroplasty?
Salim,
Thanks for sharing your story with us! It sounds like you’ve had a tough time. But it is good that you are having the urethroplasty. I think that is the right thing. Most guys do not have a problem with erections after a urethroplasty to remove such a short stricture as yours. The reason is that the urethra is very “stretchy” and if only a small section is removed, it doesn’t affect the length of the erection much, if at all. It might take several weeks or even a couple of months to get back to normal though. So don’t be too concerned if the erections aren’t “all the way” for the first 4-to-6 weeks after the surgery or perhaps longer. Remember though, that I am not a doctor. So you should always ask your doctor after the surgery if you have concerns. I called mine every week (sometimes MORE often) after my surgery.
Good luck with your surgery! Let us know how it goes afterward.
Cheers,
Ken
Thank you very much Ken for your answer. I’ll keep you informed after the operation.
Just had my procedure on Sep 4 at UT Southwestern in Dallas. I was admitted that morning for surgery and was discharged later that afternoon. I have a Foley and a sore left cheek. I found your site before my surgery and am now back “comparing notes” afterwards. I don’t seem to have much pain in the incision area and have been sitting without much need for donut. My first problem so far was that they placed my “Stat-Lock” under my belly to keep the catheter exit tube in. It’s a major inconvenience and by the second day, the stickiness had come off and the the thing detached and wrapped around the catheter itself. Since I couldn’t see down there very well and my wife didn’t feel prepared to try and mess around with it, we took a trip to the local ER (BTW, I live in Austin, about 3 hours from my surgeon but my local urologist referred me to him). It seems with the help of additional medical tape, the anchor point is more secure. I do have one kind of gross question I guess. I do notice I have a little bit of ooziness around the catheter and today when I finally had my first bowel movement (a little bit of an effort). After that there were a few drops of what appeared to be urine there. Did you experience these things immediate post op? Just trying to keep my chin up as I still have the 20+ days left before I can take out the catheter.
Hi Robert. I’m surprised the Stat-Lock came loose that quickly. Do you have more of them? You can order them on-line if you need to. I had the Grip-LOK’s, but it’s hard to get them now, since the company was sold. But you have the right idea with tape. You don’t want to mess with the security of that. About the urine question – are you saying there is urine coming out around the cath tube? If so, I think you should call your doc or surgeon’s office about that. One thing that could be happening is that the balloon is coming away from the bladder outlet, allowing urine to come into the urethra around it, rather than through it. If that is the case, you might GENTLY and SLOWLY trying to pull on the tube until you get resistance, which theoretically would mean you’ve re-seated the balloon where it should be. Also remember that I am not a medical professional. So regardless of what happens, I think you should contact your docs about this one.
Good luck with the recovery!
Ken
Hey robert, i live in the dallas area and i was wondering if your surgeon was Allen Morey? im gonna have to get a urethroplasty done soon and that is the surgeon i was referred to. How were the results of your surgery??
Ken,
My husband is having an end-to-end urethroplasty in November and I will be his primary caretaker. Do you have any advise for people caring for those who get the procedure?
Much thanks and God bless.
Hi Shania. Great question. First of all, I wish your husband (and you) the best for the procedure. You will likely need to be the designated driver for at least a few weeks, if not longer, as it is difficult to sit up straight after this surgery. Beyond that, he ought to be able to do most of his own self-care. I’ll to remember more things that my wife did for me – plus I’ll ask her tomorrow.
Good luck!
Ken
I had an end-to-end anastomosis surgery on June 9th. I went in to the doctor 6 weeks post surgery and my flow rate was very high. Since my surgery, I am experience soreness in my perineum at the site of incision, as well as lower abdomen pains, and frequent urination. I also have experience pain in my penis well after urination. I think the pain is coming from scar tissue. My follow up appointment is a few months out but I might need to schedule for an earlier appointment.
Has anyone else experienced this type of pain after their procedure?
Hi Nick. The perineum pain is definitely normal and can last a really long time – many months for some of us. But the other pain you’re describing is not something I experienced. My advice is to call your doctor’s office and ask the questions about these other pains. I often found that a nurse at Urology could answer some of my questions, and pass on the others to the doctor(s). I hope that helps. good luck in your recovery!
Cheers,
Ken
Hi
I had this exact experience a number of months after my BMG urethroplasty. It’s helpful to speak to your consultant or Nurse – I did via email. I was assured it’s not unusual, and the pain after urination can take a further number of months to resolve.
I was urinating every hour or so for a good few months, and it’s only been the last two or three that the period has lengthened between urination.
A urologist told me to hold my nerve – the key outcome is improved flow. You take ages to heal up there!
My op was in Feb and I still have some pain, but it’s definitely eased up. I keep a pain diary and it’s certainly less and less, but I am expecting it for a good few months yet, from time to time. it’s a massive operation!!!!!
Simon
Thanks Ken. Did you happen to experience frequent urination after the surgery? I’m over 3 months out and I’ve noticed this symptom from time to time.
I didn’t. But I know that it is not at all uncommon for anyone (not just us urethroplasty folks) who has been catheterized for a surgery to develop temporary frequent urination. My mom had an issue after a longish surgery. Her frequency went back to normal, but only after a few months. Still, I think it’s best to ask the professional medical folks about this one.
Cheers,
Ken
Hi Ken,
Here I am again as promised. I had the operation on the 25 th September. I stayed 4 days in the hospital and I am now home. A Swiss and French Professors did the surgery. I met the Swiss surgeon the night before the operation and he said exactly what you told me. That as I have a short stricture, they’ll probably connect the two extremities of my urethra after removing the spoiled part. About erection, he confirms what you said that it won’t be “all the way” first months but it improves over time. Believe me, I said to myself about you that you should be a Doctor because it turns out that you are an expert in urethroplasty and all what concerns urethral stricture.
After the operation, I experienced EXACTLY what Gavin had experienced after his operation: (See above his statement on July 27, 2015 at 5:56 pm).
I have 2 questions, please Ken:
1) I have a catheter coming out of my penis. Sometimes, it moves a bit and a little bit of blood comes out around the opening of my penis. Is it normal? I attached the catheter to my leg with a catheter to reduce the movement of the catheter, still a very little dry blood by the opening of my penis? What do you think? I don’t want to make any new scars after the heck of experience I had!!
2) Do you still use Donut? Is it really helpful for a 3 hours course at the University (for example)? I found one on internet but not inflatable. Do you think it will be also helpful to order it?
Salim,
Thanks so much for your report! Sounds like things are going as expected. to answer your first question – I found it helpful to put some ointment (vaseline or even bacitracin) along the tube where it goes into and comes out of the tip of the penis. Every morning there would be some reddish “goo” on there, which comes from inside. Wash this off every morning. Some if it will dry and cake on there (not to be gross, but just to describe it). I would scrape it off with my fingernail (or washcloth) if it got to stuck. Once it’s clean, put the ointment on it and on the tip of your penis. That will help it be less irritating.
For question number 2, I do NOT use a donut. I should have stopped using it within 2-3 weeks after the surgery. The inflatable ones worked well until they developed a leak. I did NOT find the soft foam ones helpful. But I DID find the hard rubber one helpful. That one looks like this – https://amzn.to/1FJz1Ba – If it’s that one, then yeah. It helped me. But you should get off the donut and onto pillows as soon as you can. I eneded up giving myself a bad case of hemorrhoids and delaying healing because I used my pillow for too long. I misinterpreted the hemorrhoid pain as continuing healing.
I hope that helps. Thanks again for your update. Hope you heal quickly and well:).
Ken
Well, I had my procedure done Sep 4. Initial concern was constipation due to the pain meds. Once I was past that I mostly dealt with the annoyance of the catheter itself (it tugs, it’s irritating, etc) and of course difficulty sitting. I have followed your advice and sat on thick cushions rather than a donut. Last week I had my VCUG, but I failed it. I’m curious if any of the folks visiting this site had failed their initial VCUG and what their experience was the second time around. For me there was still liquid left near the exit to the bladder and also I had leakage from the scrotum. I’m on round two with the Foley. I’m really hoping for…er…hope. I want this experience to be behind me so I can start the remaining healing process and get on with my life. Everything I’ve read seems to indicate a successful VCUG so if somebody has a different experience, I’d love to hear it.
Thanks.
Robert,
I’m sorry to hear that. The advice about not staying on the donut pillow came from my doctors, who said I stayed on it too long, which was a couple of months! I should have come off of it after a couple of weeks instead. I hope I didn’t imply that you shouldn’t EVER use the donut. But you should try getting off of it after a couple of weeks.
Here’s hoping your next test is better! Hang in there.
Ken
Hi Robert,
I failed my first retrograde urethrogram, meaning the catheter had to stay in longer. I had “end to end” uretroplasty, and the initial uretrogram was at 17 days after. The test showed extravasation (leaking), so they told me to wait 2 more weeks for a second test. They actually scheduled me 16 days later, and I passed the 2nd test. The doctor who performed the first test told me that he has seen patients fail the first and second tests, but told me NOT to worry. He said that eventually I would heal (and he was right). He told me that he’s seen small leaks take forever, and he’s seen larger leaks heal quickly. My story is on this page (https://livingwithacatheter.com/1-year-anniversary-urethroplasty/#comments) starting with a June 5, 2015 entry.
Next week will be 4 months ago that I had my surgery. I’ve had some recent set backs (urinary retention twice). The good news is that it’s not due to a stricture recurrence. They actually performed a cystoscopy to look at the repair site, and said it was healing perfectly with no scarring. They also looked ALL the way to the bladder, and saw NO strictures. The bad news is that they are not sure what is causing the issue. One doctor is thinking that urinary nerve triggers are spasming, while another thinks the issue is the prostate. Currently they are treating my prostate, and have put me on Tamsulosin (Flomax) and finasteride. After a month of drug treatment, my stream is still weak, but at least I have not had another urinary retention episode. Has anyone gone through urethroplasty and experienced urinary retention?
Wishing you the very best, Robert, for your next test.
Ned – thanks so much for that comment! I think it will help a lot of people to worry less if they have certain issues with leakage, etc. You’re awesome!
To add my personal answer to your question about retention, I have not had an issue myself. Good luck pinning your issue down!
Thanks again!
Ken
I am scared this is what is happening to me although its only been one week and still have another week to go before my suprapubic cath or vcug will happen, one month until I go back across Japan to the doctor that did the surgery. I have been trying to pee on my own since I got released from the hospital and I can get a stream but I will push until I am light headed, then I will take the cap off the catheter and see how much is left and its usually always more….I am worried
Hi Ken,
I was Tube-Free yesterday at 10.20 AM. They didn’t do the urine flow exam but they gave me an appointment with my Professor the 3rd November 2015.The Professor came to see me after they remove the catheter and he told me not to worry too much about the erection issues because I had a very good operation done by the best Professor (means the Swiss Professor Christophe ISELIN of Geneva).
I was impatient to see my urine flow for the first time after the operation and the whole shebang. I peed around noon but telling the truth the flow was normal. I don’t even know after all these years what peeing normally means. In the past, I had always the feeling that I didn’t empty my bladder. I had to go several times to the toilet especially before I sleep or sit home and drink a lot of water. Now, I don’t have this feeling/ when I pee I feel that I emptied my bladder. The erections still painful (let’s say it wakes you up because you feel uncomfortable with it).
I have few questions for you Ken, if you don’t mind:
1) When I had the Dilation before in the Parisian Professor’s office, the flow was very strong just afterwards before it starts to weaken in the next days. Do I have to expect to have the same strong flow now after they remove the catheter or a normal one? Is the fact that I feel that my bladder is empty after I pee is enough to consider that I am OK now?
2) I still feel dizzy when I woke up or after a while when walk outside the house. Sometimes I even have a temporary fever. Is it normal?
3) Is it advisable to put tight underwear because that what I do now and I feel more comfortable in the scrotum area?
Hi Salim. Congrats on being catheter-free! I actually didn’t have my first official flow test for a month two or so after my surgery. When they took out the catheter, they did watch under an x-ray (contrast solution) to make sure there were no leaks. But that’s a different thing. They weren’t measuring flow rate. So it’s normal to wait several weeks after removal for the first actual flow test.
Now to the questions:
1. I would say the fact that you feel you emptied your bladder is the most important thing. That was the ultimate goal to begin with. The super strong flow that some guys get after removal eventually fades back to “normal” anyway, typically. So unless you start to have trouble with not feeling emptied, or having to go too frequently again, I would consider things are good.
2. Anything to do with dizziness should definitely be addressed with your doctor. I can only tell you what I felt. For me, I was very out-of-shape because for a long time, I couldn’t really do much activity. And after the surgery, I felt dizzy/woozy for several weeks. I think general anesthesia can do that to some people. So for me, it was temporary. But like I said, you should definitely ask your doctor about this one.
3. I was advised to wear the tight underwear, like a jock strap, for several months after the surgery, to help support the area and promote healing. I didn’t do this at first, and I think that was why it took much longer for me to heal up down there. So yes, it’s probably a good idea.
I hope that helps. Good luck moving forward!!
Cheers,
Ken
Thank you very much Ken for your answers. I am really very grateful for you and your idea of creating this website for us.
Ken and all,
I had my urethroplasty Feb 16th, 2015. I had cats in for 3 to 4 weeks. After all seemed to be progressing slowly.
The end of May I mowed my yard on my riding lawn mower and planted my garden. These agitated my perineum. I was peeing frequently, sporadically and having some retention. over the Spring and Summer I became anxious about the results. After a scope that all was successful and another VCUG that seemed fine even though I had retention, I was referred to a physical therapist that specialized in pelvic floor muscle rehabilitation. I have been going to them since August. Positive results were within a couple of weeks. Best money I have ever spent. I do simple stretches and exercises twice a day. Peeing less frequent with more volume and pressure. I talked to my buddy who had a hip replacement. He and I agreed that the surgeons do an excellent job repairing the problem. But some of us, many of us need the physical therapist to get the area back in shape so it can function properly. He said it could not walk without his physical therapist. I could not ever void as well as I can now without my physical therapist. I highly recommend anyone that goes though this surgery or any other to see out a physical therapist to get the muscles back in shape. God Bless you guys!
Ken and all,
I had my urethroplasty Feb 16th, 2015. I had caths in for 3 to 4 weeks. After all seemed to be progressing slowly.
The end of May I mowed my yard on my riding lawn mower and planted my garden. These agitated my perineum. I was peeing frequently, sporadically and having some retention. over the Spring and Summer I became anxious about the results. After a scope that all was successful and another VCUG that seemed fine even though I had retention, I was referred to a physical therapist that specialized in pelvic floor muscle rehabilitation. I have been going to them since August. Positive results were within a couple of weeks. Best money I have ever spent. I do simple stretches and exercises twice a day. Peeing less frequent with more volume and pressure. I talked to my buddy who had a hip replacement. He and I agreed that the surgeons do an excellent job repairing the problem. But some of us, many of us need the physical therapist to get the area back in shape so it can function properly. He said it could not walk without his physical therapist. I could not ever void as well as I can now without my physical therapist. I highly recommend anyone that goes though this surgery or any other to see out a physical therapist to get the muscles back in shape. God Bless you guys!
Wow! Thanks Dennis. That is incredible! Thanks so much for sharing that. I was not aware that having physical therapy could assist in regaining proper urination after surgery – not just urethroplasty, but other surgeries (like your friend’s hip surgery) as well! Amazing.
Thanks so much – again – for sharing that so other folks might be able to benefit.
Cheers!
Ken
Hi Dennis T —
Thank you for your 11/1 post. You may have read my 10/8 post above where I asked if anyone had experienced retention. Thank you for sharing your experience. I have had 3 episodes where I could not void at all, and each time that I went into the clinic or ER I had over 800 mL in my bladder (one time it was 1,000 mL). For me, my stream would get weak at about 3 weeks after removing the foley catheter, and at 4 weeks I would have a complete retention issue.
On 10/21, I had a complete urodynamics test done followed by a cystoscopy by the doctor who performed the anastomosis urethroplasty on 6/12. The cystoscopy showed the repair sight was NOT at fault for the retention. The urodynamics showed that my bladder was working properly and creating the proper pressure most of the time. The doctor said there was one time during the urodynamic test where the bladder pressure was weak, and he attributed that as possibly being the reason for my retention issue. He was also able to rule out the prostate as being part of the retention issue.
He told me I have two options:
(1) Go on as I had been, and if I experienced another retention episode I should head to the nearest clinic (or ER if after hours), or
(2) Come back in one week and learn how to self catheterize so that I could take care of any new retention episodes by myself.
I chose option #2, because every time I had a retention episode, my bladder was distended (stretched) and therefore the protocol is that a foley must remain in for at least 10 days. Self catheterization is with an intermittent catheter and not a foley catheter, meaning it goes in, and comes right back out. I will be the first to admit that I was scared to even try this procedure, but I believed that if I knew I could “self cath,” perhaps I would never have another retention episode. Sometimes retention can be brought on by the mental fear that it’s going to happen again. I certainly felt like it was a “mental thing” for me the second and third time that it happened.
On 10/28 I was taught by my surgeon’s nurse how to self cath. She has the perfect demeanor and personality to be teaching this procedure. She is very professional, knowledgeable, and put me at ease. It certainly helped when she told me that she has been teaching the nurses at the medical college how to do this procedure for 16 years. Further, she said self catheterization is more common that any of us would ever believe (she teaches at least a patient per day). The process is no where near what I had imagined and feared. It’s actually a lot less painful when done by yourself than when done by any professional, and it’s easy. I am completely confident that I can handle any further retention issues by myself. I also believe that as I continue to heal and get stronger down there, retention will not be an issue.
However, I am intrigued by your post Dennis, and would like to know if you could describe how many exercises the PT taught you, the name of the exercise(s), etc. I had researched exercises for retention prior to having the urodynamics test, and the only thing I could find was talk of Kegel exercises. Any light you can shed would be very helpful. I am thinking of finding a PT who specializes in the pelvic floor muscle rehabilitation.
By the way, for anyone reading this who may be prescribed a urodynamics test, it is nothing to fear. The actual test is about 20 to 30 minutes, but be prepared to be there for a full hour as they prep you and inform you what the test is all about. I found that the description on the following page is close to what I experienced: https://www.mygyne.info/urodynamicTesting.htm.
In a week and a half it will be 5 months since my surgery. I really do feel great, and even though there’s been some bumps in the road during the healing process, I would do it all over again rather than live with a stricture.
Best Wishes & Happy Healing to All —
Hi Ned,
I am sorry to hear you are having some problems. My urologist considered having me self cath but then he decided against it and did another scope and urodynamic test. Then he and the surgeon referred me to the pelvic floor PT. Ned where did you have your surgery? Who was the surgeon?
I also see a therapist as this had created bouts of anxiety which makes retention worse.
The exercises I do are done twice a day lying on the floor. Some seem very much like yoga. There are breathing exercises while on your back with your legs straight (10 breaths breathing so you can feel it fill your pelvic area). Then 10 breaths on your back with your feet as close to your butt and on the floor with knees bent and laying out to the side far apart. Third is called the windshield wipers, laying on your back legs and feet extended, rotate your feet out and inwards, 10 times. Fourth while on your back, feet up by your butt with knees bent, bring knees together and then slowly lay knees out to side as close as you can get to floor, feet still on floor near butt, 10 times. Then there is 10 breaths filling pelvic area while in the “sleeping baby” pose. Then 10 “cat / cows? A few kegels with 5 seconds in between, then several ladders( where you feel like you are walking in deeper water and you are trying to lift your gonads out of the water. I hope you can find a pt that specializes in pelvic floor rehab.
Hi Dennis —–
Thank you for all of the information. I will try that, and will also look for a therapist who is trained in pelvic floor rehab.
Most of my story is on this page of Ken’s site (https://livingwithacatheter.com/1-year-anniversary-urethroplasty/#comments) starting with a June 5, 2015 entry . My surgeon is Dr C Robert O’Connor at Froedtert in Milwaukee, WI. I am pleased with the surgery itself, it’s just been the retention that has been my issue. When I said that the second & third episode of retention felt like a mental thing for me, I was referring to the anxiety that was building just prior to it actually happening. I noticed you confirmed that anxiety certainly makes retention worse. Learning to self cath has completely removed that anxiety, and that is certainly a good thing.
I really am confident that time and healing will take care of everything, but I’m also committed to doing all that I can to help heal. Thank you so much for sharing those exercises. I am beginning those tonight, and looking for a PT in the morning.
Hello. Great to have read so much success with this very delicate procedure.
My story, in a nutshell, is that because I was in a coma from an accident I had, they placed a foley in me.
As a lot of you guys might know, that injured my urethra, so I’ve been dealing with this for 8 years now.
I’ve had 4 cystoscopy procedures done with no luck.
I just recently (Nov. 4) had my urethroplasty procedure done.
Everything seems to have gone extremely well. Im in Winston-Salem, NC. My doctor Mr. Trevelonski (I believe that’s how you spell it) is actually a teacher for the procedure so I think I was in good hands.
My question to you guys is: with the suprapubic caterer, is it ok to face it up or down? It’s just so uncomfortable to have it always facing straight (erect). I have been facing it downward but I feel as though the area is very tender now. I asked a nurse and she said it’s no problem to face it up or down. Any advice?
Another thing that happened yesterday was that I peed a little out of my penis. I stopped it though but I could have continued had I wanted.
Thanks in advance
Hi Camilo – Thanks for sharing you story. So glad things are going well. As for your question (keeping in mind I’m not a medical professional) – it’s fine to have the SP tube flat against your belly, whether up or down. What is most important is that the balloon inside is kept against the bladder wall. It doesn’t sit down in the bottom like it is when you have a “regular” catheter coming up from the urethra. That said, just keep is secured relatively flat against your belly with some medical tape, and then secure it again near the end of the tube where it attaches to the bag tube. You’ll probably never get it completely flat though. Like any hose, you need to be careful not to kink the tube, which could shut off the flow of urine through the tube. So look out for that. With the thicker tubes, it isn’t that easy to get a kink in the tube. But with a thin one (like I had in the first month of my SP tube with a 10-French size), it can easily get twisted and kinked. Like you, I ended up peeing through my penis a few times because I hadn’t realized that my tube had gotten twisted and kinked. I don’t know if that is what happened to you, but it might be worth double-checking.
I hoped that helps. Good luck in your recovery.
Ken
Sounds great. I will try that. Thanks so much.
Now I think we’re all curious about how you feel now that your surgery was a couple of years ago? Is everything flowing good/strong?
For a more personal question: how’s your ejaculation? How’s your inner lip?
As stated by a couple, my mucosa is in more pain than anything else.
Thanks so much for the response.
Camilo,
Everything works the way it would had I not the surgery:). In other words, things are all back to normal. Thanks for asking. As for the lip – it was not part of my surgery. My stricture was only 2 cm, so they didn’t use a buccal graft to augment my end-to-end.
Cheers!
Ken
That’s great. Good for you to not have to have felt this awful pain.
Thanks so much for your help through this.
HI Ken
I’m planning on going through with a bmg urethroplasty to repair a stricture in my penis. Oddly enough, even though they will be cutting my penis open….I think my main worry is the catheter that will be inserted following the operation.
1. I got my stricture from a cystoscopy in the first place, and am terrified that after going through such a serious surgery, the insertion of the catheter will cause new scar tissue that will land me in even more trouble.
2. I’ve been reading that catheters should never be left in for more than 2 days due to risk of jnfection, so I find it strange that it’s left in 2-3 weeks?
What are yourel
What are you’re thoughts and personal expiriences regarding the catheter?
Adam, I had mine in for 6 months prior to my surgery and for 10 days after it. Yes, Catheter Associated Urinary Tract Infections are a worry. I had one UTI in the 6+ months I was catheterized. Like any medical treatment, your doctor always weighs the potential side effects and risks with the potential for successful treatment. The literature is replete with admonitions against catheterizing unless absolutely necessary in hospitals, because a lot of times, it becomes 2nd nature to just go ahead and catheterize someone so they can be kept in bed. However, when you’re talking about surgery, and especially urological treatment, it is usually necessary to catheterize in order for you to heal. There quite simply is no other way.
I’d be interested in knowing where you read/heard about “not leaving a catheter in for longer that 2-3 days.” Heck, there are people who have to live their lives with a catheter. So learning to avoid infection becomes a daily thing. Check out my article about catheter care and infection here: https://livingwithacatheter.com/urinary-tract-infection-and-catheter-care/
Hope that helps. good luck with your surgery!
Ken
Yeah I read a couple of articles saying that you should change catheters every 2 days or so , but maybe there’s different kinds, I don’t know.
But I’m just really worried that the catheter is going to cause more damage to the urethra because truthfully the 16F catheters look huge to me. I feel like the urethra is such a thin tube . Should I maybe ask for them to insert the thinnest catheter possible to avoid causing more scarring tissue?
Adam,
Having the catheter put in post urethral surgery is very different from having one “routinely” pushed in for other kinds of procedure. So really, the risk in your case for damaging the fix is very small and having the catheter in is absolutely necessary for healing and post-surgery peeing. BTW, the normal opening for an adult urethra is equivalent to 18 Fr. I know! I was amazed too, but it’s true. And based on this study – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4006015/ – The “average maximum stretchable external urethral meatal size in an Indian adult male was 28.49 Fr.” That’s pretty darned large. So don’t worry about 16 Fr.:).
Hope that helps.
Ken
That does help thanks!
By the way how are things going for you now that it’s been a while since the operation? Hope all is well and you are back to 100% 🙂
Hi all
First of all, I’d like to thank all of you for sharing your stories, in particular Ken for hosting and moderating this site it has been a great help during this stressfult time.
So my story: As far back as I can remeber I have had urinary symptoms. I never made much attention since I assumed (hoped) it was normal to burn from time to time, take effore to stop, have a split stream, post void dribbling etc etc And as these symptoms were all intermitent they never bothered me too much.
Until… one morning in December 2013 upon awakening I felt the urge to go but could only squeeze out drops. I saw a local urologist who did a cystoscope in his office revealing a stricture. He took me to OR that day for dilation foley removed a few days later (developed spasm during those days whihc was worse than the initial retention). After foley removed things were great for a few months until symptoms began returning. Urologist kept reassuring me that as long was manageble to just leave it alone.
then in February 2015 went into complete retention. He took me in for DVIU and things were ok for a month or so. As symptoms began returning he offered urethroplasty saying “I’ve done a few, I’ll give it a shot”
naturally I passed and saw a specialist in the city.
I had BMG urethroplasty on 10/22. Recovery went pretty well, I had a foley for just under 3 weeks, uncomfortable but manageble. Removed 11/11. It is interesting the subtle differences between surgeons. Eg I was not kept overnight, when removing foley he did not check VCUG just made sure I urniated ok and sent me home with follow up planned in 3 months, he sewed a rubber patch over mouth incision which probable made it much more comfortable (the worst part of the whole ordeal was a week post op when patch fell out my mouth was in agony was the only time I needed percocet)
The only symptoms I’m having are weak stream for a moment as I start voiding it picks up after a second is stronger and faster than I can ever remeber. And then at the end I have a few moments of dribbling, deffinitly less than before, but it is still there.
If it were to stay like this for ever I’d be very happy, only worried about it worsening.
Anybody else have similar symptoms post op
Thanks for sharing your story, Bob!
Good luck with your recovery. I’m thinking there is a good chance that you won’t revert to the old symptoms now that you have had urethroplasty. Those other procedures you had are known for their temporary nature. But urethroplasty has a high chance of being permanent. I’m still doing well after 2 years.
Thanks again!
Ken
Hi Ken,
It has been 2 months and 10 days since my end to end urethroplasty. Things still good for the moment.
Regarding peeing: The flow still strong but sometimes I experience a weak flow especially after sex and gradually the stream becomes normal again. I noticed this 2 times since my first sex after operation ( it was almost 6 weeks after the surgery).
Concerning erections: Telling the truth the first ones after Being catheter-free were downward and gradually they become normal again. The ejaculations, however, are not like they were before the urethroplasty. The sperm goes out in small quantity and I feel a temporary soreness afterwards in my urethra.
Somtimes in week-ends I make love in the evening, and I can also have boners the morning of the day after and sometimes in the heat of excitement I make love again but telling the truth I regret it because I think I overdo it especially thinking about the fact that I had my operation only 2 monthes ago.
Today, for exemple, I went to toilet several times to empty my bladder. I worry myself all the time that the stricture will reappear again and sometimes I feel very upset. You understand that in my thirties I have to enjoy myself otherwise what is the need of going all over the urethroplasty ordeal.
I have a question Ken, please:
1) Could you first comment what I wrote and advice me as well;
2) if the surgeon had cut the spoiled part when he did end to end urethroplasty, how the stricture can reappear again?
3) I have to sit in my chair almost 7 hours per day. I use a pillow as you advised me, it helps. However, sometimes I have to wait sometimes more than 20 secondes before I pee, is this due the the fact of seating longer on a chair?
I have a follow-up appointment on tuesday with my doctor to do a void test.
Salim,
Thanks for the update. Keeping in mind that I can only comment based on my own experience and what I have read/heard – 2 months is still early. I know it may not seem like it, but remember that it took 11 months for most of my pain to go away. So first of all, you shouldn’t worry too much about things recurring or failing at this early date. The odds are in your favor since the procedure has a very high long-term success rate. It doesn’t sound to me like you are having anything totally unexpected or strange. I think it just needs more time.
2. A stricture is usually made of scar tissue. So when something is cut out (like a stricture in a DVIU procedure – which is why they have a LOW success rate), the wound will develop scar tissue again. But in an end-to-end, the “wound” is just around the edges of the cross-section of the urethra. So even if a little bit of scar tissue develops there, it wouldn’t be inside the urethra by much, so it would not cause a blockage. With your situation, the only likely way for the stricture to recur would be if the inside of the urethra tore or was cut again, somehow. In other words, it isn’t likely.
3. Yes, I believe that is correct. It would probably help if you got up and walked around every 20 minutes if you can.
I hope that helps!
Good luck healing:).
Ken
Thank you very much Ken, your answers gave me some relief.
You’re welcome, Salim. Glad to help in any way I can.
Cheers!
Ken
Thought I would share another story and provide another history for all. Sites like this are very good for us to use as they focus on the realities of life and how reality interfaces with the clinical.
I am a married white male, now 47 y.o.. 200#, not super-fit from a gym rat perspective but very active in my outdoor pursuits and daily work routine. I work as a radio technician and communications installer for a two-way radio company.
In September 2014 I was diagnosed with prostate cancer, left hemisphere fully involved. No visible symptoms – was found on an in-depth blood screening and subsequent biopsies and such. After a fast track of tests and biopsies I underwent high-dose brachytherapy in January followed by EBRT for 5 weeks.
3 weeks into ERBT I had blood in my urine and painful urination. “It happens” was the response from the cancer center. I dealt with painful urination for months. Local urologist chalked it to EBRT side effects – suck it up and deal with it basically. Fast forward to August 2015.
I went to another local urologist. after a cystoscopy he noted a stricture and recommended “balloon treatment”. Sorry I do not know the clinical term. A catheter with a balloon is placed even with the stricture then inflated to stretch the scar tissue. Balloon burst during procedure. A new “10” on the pain scale when that happened – like a shotgun shell going off inside your juicy bits. Wow…… Doc says it happens and see how things go we might have to do it again.
Painful urination continues for a month and culminated during an extended antelope hunt. I could not get off my ATV fast enough to drop my drawers and pee. After some embarrassing episodes I called my wife and told her things had reached critical mass and I wanted to go to University Hospital in Denver and not the local Doctors. Peeing your pants when hunting was the last straw (or so I thought).
I was blessed the next day with an antelope and came home. The next morning I could not pee at all. Trip to the emergency room and after numerous forceful attempts (nobody likes a quitter!) Madam Helga the ER Doc gets a Foley in through the penis. Another “10” was reached in this process”.
The Doc who ruptured the balloon took out that penile Foley a week later. Not wanting to anger the guy ripping a tube from my penis I did not inform him of my plans to go elsewhere for further treatment.
I worked with my local GP and got a recommendation to University Hospital in Denver. Three weeks later I saw a specialist there who did another cystoscopy. Stricture. A week later a SPC is placed to allow the urethra to heal.
Went for SPC replacement yesterday and follow-up. (By the way – that was just a whole lot more uncomfy that I thought it was going to be! Well below a 10 for pain but way up there for momentary uncomfiness….) Anyway, even after rest I cannot pass through the urethra. Anterior urethroplasty is on the horizon. We will let the urethra heal with a SPC for another 2 months then in March tackle a urethroplasty with mucosal graft.
Not looking forward to the healing process for sure. My life outside of work focuses on my faith and family (wife an 9 year old daughter). A big part of that is time spent outdoors riding ATVs, enjoying the outdoors, fishing, camping, hunting, being outside in general. 6 months of no riding the ATVs will be difficult but I should be healed up in time to hike and hunt hard before September hunting seasons. Faith remains very strong and would not be able to fight this long without it. In my opinion, as important to the healing/treatment process as anything else – if not more so.
No lies here – the procedure scares the heck out of me. One look at pics on Google make a fellow want to run for the hills. But, after almost a year of constant painful urination and procedures here we are and a 90%+ chance of final pain free life is on the horizon (after what appears to be 2-3 weeks of pretty significant painful post-urethroplasty recovery).
I will update as this adventure continues. Thanks to all who have contributed here. Any questions just ask! As a very active man with a SPC I have tried a multitude of combinations to make a SPC livable for me – none of which seem to be advertised much out there.
Chas
Thanks for your story Chas! some of it sounds familiar to me – the “new 10” when nurses tried to force a catheter in without knowing (or considering) the possibility of stricture, for instance. Also familiar is the placement of the SPC to let the urethra “scar down” and the bladder to rest prior to the urethroplasty. Looking back, I am really grateful for the SPC. It allowed me a lot more freedom and less pain (except for the first 2 changes, which were – like for you – pretty painful) than a penile cath. I got used to it pretty quickly and was able to get around and do stuff with the help of good leg bags (I wore mine down above the ankle) and draw-string pants.
Good luck on your upcoming surgery! Let us know how it goes!
Cheers,
Ken
I will be undergoing urethroplasty this month. Doctor said he would be removing some skin from inside my mouth and would be using it to treat my stricture. I heard urethral strictures are rare in females. I am not comfortable and confident. Please help.
Hi Jessica. Yes, they are relatively rare in females – probably because the urethra is much shorter. But it does happen, obviously. Did your doctor tell you how long the stricture is? Because it isn’t always necessary to use a graft from inside the mouth. It depends on the type of surgery and how much of the urethra they have to remove. For example, in my case the stricture was only about 1 cm in length. They were able to cut out the stricture and sew the healthy halves back together without much stretch on the remaining urethra, so no graft was needed from my mouth. For longer strictures, the repair can put less stress/stretch on the remaining urethra by using a graft from your cheek. I would recommend asking your doctor if the graft is absolutely necessary. Either way, good luck! Lots of us here have been through this and are doing great now.
I hope that answers your question.
Cheers!
Ken
Hello all. Just wanted to give anyone that is contemplating having this procedure done (urethroplasty with mucus graft removal) an update on how my procedure has come along.
Cutting to the chase here; I had my procedure done November 4 2015. Everything went great.
Had to use a foley catherer and a suprapubic catherer for an entire much (yes, I used the term “entire” because the lack of mobility seemed to place time at a slower pace).
But now that it’s all set and done, I am urinating like A champ.
Granted it’s been just 2 weeks since I had the catherers removed.
So I’ll keep updating every so often just to keep anyone who’s interested in knowing the long effects of the procedure.
Thanks for the update. So glad it all went well and that things seem to be going well. Fingers crossed for an excellent recovery moving forward!
Merry Christmas!
Ken
Hi Ken,
An Update:
I met my doctor for a check out as I told you before. I asked him (as I did with you) about how is it possible that the stricture could reappear even after cutting the spoiled part during the urethroplasty. He told me its recurrence could happen only if they didn’t cut enough of the spoiled part which is not my case, he assured me. He gave me another appointment by April for a re-check and he told me that he thinks that my stricture is over with. I was very happy and I hope that everything will be OK in the future.
I also asked him about the weakening of my peeing after sex and how it gets to normal few hours sometimes 1 day afterwards and he said it is normal in my first stage of healing.
Questions:
1) I read on this page about leakage after an urethroplasty. What does it mean? Does it mean that pee goes out through the scar of the surgery when the person urinates?
2) Do you know personally or through your readings somebody who has been healed from his stricture after an urethroplasty for more than 5 years? I mean, when you say the urethroplasty has high success rate. Does it mean that the stricture will never recur again after an urethroplasty?
3) Ken, I didn’t do any sport since the operation? Can I do some running? Play occasionally a football game? Or it is wiser not to take any risks till after one year?
4) I still have some stitches in my scrotum when will it disappear completely (when did it disappear in your case, please?)
Hi Salim. Thanks for the update! As for the questions…
1. When I mentioned leaks, I was talking about the urine leaking through the stitched up urethra, yes. That was what I was talking about. Others may have been talking about extra pee coming out after you do the “main” peeing.
2. I do not know anyone whose had the repair for more than 5 years personally. But yes, the long-term success rate does mean it never recurs.
3. About activity, I don’t think you need to wait a year. It’s all going to depend on how you feel. And if you really have any concerns, I’d advise consulting your doctor. But after 2 or 3 months, much of the danger of damaging your repair should be done. You may have pain still, but that will mainly be all the tissue and nerves that was cut when getting to the repair site.
4. I thought I still had stitches in there a couple of months afterward. But after 8-10 weeks, Mine were gone as I recall.
I hope that helps. Good luck!!
Ken
Thank you very much Ken for your answers
I am 50 years old and I had a perineal Urethral procedure completed in Sheffield, England on 09th December 2015, I was discharged on 14th December.
Pre op I was told that the two stage approach would be used but immediately post op, whilst still in surgical recovery, the surgeon informed me that they had taken grafts from both cheeks and my tongue and repaired a 15cm length of intermittent stricture in a one stage operation. I still have no idea why the strategy was changed from the pre op briefing to the theatre and operation, but that’s what they went with.
The following few days were painful and uncomfortable, as you would expect, I had no appetite at all, my mouth was very sore and uncomfortable, but the worst pain was from my scrotum every time I tried to sit, stand or get up from the bed. I eventually figured out ways of hauling myself off the bed and in and out of chairs to minimise the pain and, obviously, the pain killers did help considerably as time went by.
I was discharged five days post op and had an appointment for a Urethrogram pre booked for 21 days post op. I didn’t really experience any major problems at home, I managed to get around OK, sorted out a comfortable shower routine and changed my dressings and pads without any drama. The surgical wound site was, and continues to be, sore but is easily managed as long as you are careful in everything you do, however I was aware that my Urethral catheter was getting increasingly uncomfortable but convinced myself that I should just grit my teeth and get on with it for a couple of weeks.
Unfortunately the first Urethrogram showed leaks in the graft and I was sent home and told to wait for another appointment. I was upset as I had managed the Urethral catheter situation by convincing myself it was only for a limited time and couldn’t get any worse. Unfortunately it can, and did. Over the next few days after the first Urethrogram I stopped draining through my Urethral catheter and was draining almost entirely through the SPC. As this situation developed I started getting intense urges to pee, usually when I was standing up, and eventually started to regularly bypass the Urethral catheter and pee into my pads, which consequently needed changing two or three times a day, and also led to one or two night time accidents, all very frustrating. My pads were also collecting quite a lot of brown / red discharge from around the catheter. I was getting so concerned about this I rang the surgical ward and they told me not to worry and it was quite normal for one catheter to become dominant and that the bypassing was also to be expected. It’s safe to say I’m still not convinced!
The second Urethrogram was booked for 30 days post op (yesterday) and again showed the graft hadn’t sealed and was leaking. I was distraught, extremely upset, as I couldn’t believe this could happen twice and that I wasn’t given any information pre op to prepare for such an eventuality. I was told the graft had improved and the leakage had become more localised, whatever that means, but I am now getting increasingly pessimistic about the overall outcome and success of the operation and have absolutely no idea what to expect if the next Urethrogram again shows leakage of the graft. I am still suffering, intense and uncomfortable urges to pee and I am still bypassing the Urethral catheter regularly through the day, although, strangely enough, the Urethral bag drain has now returned to what are probably normal levels.
The Urethral catheter has now been in for over 30 days, the tip of my penis is incredibly sore and uncomfortable, I can also now feel the catheter internally on occasions, which is leading to difficulty in most things I do, and, as there seems to be no current end to the situation, it is becoming quite depressing.
I am absolutely delighted that most on here have experienced positive outcomes to their procedures but unfortunately there is also a downside too, which unfortunately I seem to be experiencing.
Thanks for allowing me to get things off my chest, it’s been quite cathartic. I hope my current pessimism is misplaced but I have to admit I have pretty much resigned myself now to a disappointing outcome.
Gary, I’m so sorry to hear about how things have gone for you. It seems like you had a super long stricture at 15 cm. I’m assuming that increased the level of difficulty of the repair by a lot. I hope you can get the situation resolved as soon as possible.
Best of luck!
Ken
Hi Ken,
I haven’t had an update for a while. I had my end to end urethroplasty 2-16-15, which means a I almost to my 1 year anniversary. Back in December my surgeon performed a cystoscope to check on how things were going. I should say that I also had one back in July as I just started going to pelvic floor physical therapy as my bladder had some damage from my stricture.
I am voiding better all the time and my confidence has come, gone, and come back over the months. My residual is high, 99-165, as I also suffer from controlled BPH.
Back in December when I had my cystoscope, everything seemed positive. Later I did find out there was a small ring of scar tissue , I guess where the end to end was connected. My question for you and others on your site is, is evidence of a minor amount of scar tissue at the surgical site one year out common?
Thanks for any feed back!
Thanks for your blog /site Ken!
DennisT
Thanks for the update, Dennis. I have actually wondered that myself – about scar tissue from the surgery itself. I must believe that if it scarring is at all common, it doesn’t typically cause a recurrence of a significant stricture because the stats on the recurrence from an end-to-end show very high long-term success. But I don’t hav any direct or specific info on scarring after urethroplasty. I’ll look into it.
Thanks again!
Ken
Hi Ken,
I talked to my surgeon / urologist Dr. Brooke Edwards today. The scar is normal. There has been no further growth of scar tissue other than the scar of connecting the two ends together. Relief. Have a bit of urethera scar phobia by now.
Dennis T
Thanks for that info, Dennis! I, too, hav a bit of PTSD every time I have a bit of extra pee AFTER I emptied my bladder, or when my stream is weak. But I think sitting down for long periods of time and other things can cause this to happen normally from time to time. Then everything will go back to a normal stream again and all will be well. I think it’s hard when you’ve been through this not to have some sort of minor paranoia:-P.
Glad to hear you have nothing out of the ordinary.
Cheers!
Ken
Well, 2/16/2015 is the big day. As expected and predicted, urethral/bladder rest was not successful and urethroplasty is now scheduled for next week. My insurance (surprisingly) mandated an overnight stay. Still not looking forward to the procedure but hopeful for a positive outcome to relieve the pain and stress of the last year of dealing with the stricture following prostate cancer radiation therapy.
Urethral rest did have one positive note, however. The original “large” stricture that had the Doctor worried when he saw in in November (see post above for the story of how I got to that point) has now decreased tremendously in size. The residual stricture is only located at the lower urethral sphincter and about 80% smaller than initially estimated. because of location, the urethroplasty will be considered both posterior and anterior. Granted the remaining stricture is pretty severe but the amount of repair needed is much smaller now. My Doctor still insists on a cheek graft and sees better results and fewer complications with the graft versus end-to-end. I guess that is why he does surgery and I install radio communications gear – we each have our expertise.
After the surgery I will continue with the SPC for 6 weeks as an “emergency valve” and a penile catheter for 4 weeks following the surgery. It is what it is….
So wish me luck and send prayers my way next week. I will update as I progress through the healing process.
Chas.
Thanks for the update Chas! Best of luck wie\th the urethroplasty!
Cheers,
Ken
3 weeks since the big cut. all went as expected. I ended up with an additional hospital stay due to pulmonary embolisms that came about 5 days after the surgery. That really got the attention of folks when even with 5L of 02 at the ER they could not get my O2 levels above 70%. Unknown how the Coumadin may or may not affect the urethroplasty graft. I guess I find that out next week. Mouth graft completely healed now.
When they started me on the blood thinner shots my bed bag was full of bloody urine. now on Coumadin and not the shots there is not a speck of blood. not sure what all that was about. Not even the hospital staff could really explain anything there.
Next Monday they pull the penile catheter, will leave the SPC for a couple of weeks as an emergency valve of sorts. Not really sure what to expect at that point. I mean I haven’t urinated naturally for 5 months now with the SPC. I guess the bladder will need to be retrained to “hold” fluid again”. Hopefully the graft worked and the retrograde pics will show no leaks before they remove the penile catheter.
Still sore from the incision. 1/2″ from the anus up to the middle of the scrotum. Incision is sore but not tender or painful. Healing as expected I would say. No pain pills since the first week after surgery when things were really tender. A pillow on my chair at work is certainly my best friend though,
So, Ken and others – what should I expect after Monday when they pull the penile cath out? How long should it take to get back into the habit of “holding” urine in the bladder? Are urgency issues to be anticipated? Very much in the dark over what to expect.
Other than that I am taking the healing part slow. I took 3 weeks off of work (expected just 2 weeks but the pulmonary embolism hospital stay changed that). I am only on computer duty for the next few weeks then light duty for another 6 weeks after that. After 3 months I should be able to act somewhat normal in what I do and hopefully the incision pain is much less. No severe scrotum pains like others have mentioned on here, just feel like I was split and sewn back up regular discomfort so far.
Thanks for the update, Chas!
As for the bladder returning to normal, I was pleasantly surprised at how fast it happened for me – like within days! It’s odd, but when I had the cap on my SP tube, and just opened it when I had the urge (which was like every 45 minutes), I thought my bladder was going to need serious time to retrain. But once the catheter was out, it seemed to snap right back to normal. Hopefully that is what will happen with you. However, it may have been (just a guess here) due to the fact that I had a ballon still in my bladder with the SP tube, that caused the frequent need/urge. So don’t come to any conclusions until you have no catheters in you. Best of luck on the upcoming checks!!
5 weeks since big cut. Capped the SPC this weekend per the Dr.’s orders. . Like you said, other than the “feel” of having to go every 45 minutes to release just what seems <200cc of fluid, All seems to be operationally fine. This is good because that means the SPC comes out next Monday since all plumbing appears to be working normally and the retrograde urethrogram showed no leaks last week and penile catheter was removed also. Maybe there is more volume coming out than I think since I have not seen a stream like this since before the prostate cancer in 2014. As long as things are working I am ecstatic.
Mouth is all healed though the scar tissue has forced me to relearn drinking from a Nalgene or beer bottle. The scar tissue has forced things to seal up a bit differently than before. No big deal but have definitely made a few messes when taking a big drink. Just one of those unexpected things I guess.
Made it through the few full nights no issues other than getting up about 4 times. I was most afraid I would see problems here but so far so good. Again – hoping that after the SPC is removed some progress is seen there as far as how many times I will need to get up. I have been wearing a men's leak guard as there is a bit of drip here and there but Doc said it will be 6 months before we really know what if any incontinence will be permanent.
If wearing a guard is my biggest concern after the last year of horrible misery then I will consider myself very blessed!!
As far as sexual side effects – definitely have not tested things per Dr. orders of 12 weeks but signs of life definitely do exist so it appears that no damage was done on that front.
Incision is to the point of being uncomfortable. No more real pain but certain positions are very uncomfy and there are a couple of stiches I cannot wait until they dissolve and go away because the porcupine quill they are emulating right now is getting tiresome.
Will Update in a week or two. Thanks to all! I can definitely recommend the staff at University Hospital Denver. All has been as promised and staff and billing departments are great to work with.
Ken: What should I expect with the SPC removal? Do they toss a staple or a couple of stitches in there or just iodine and a big bandaid?
Thanks Chas! I never slept with just the cap. I always switched to a bag for that. I found that even though with the cap, I had to go every 45 minutes, when I got the SPC out (and the other one out after healing), all went back to normal – about every 4-6 hours.
About getting the SPC out – I had mine in for so long that the hole had healed/scarred like a pierced ear. So all they did was put a bandaid over it. That hole heals up pretty darned fast, like within a couple of hours. No stitches at all.
Thanks again for the update!!
Cheers,
Ken
Great information here. I am 1 week and a day post surgery. I had to have my entire urethra replaced. By far the worse thing was the 2 days in the hospital with little movement to allow the graft to begin to heal and attach I have an appointment for my first follow up in 5 days. Right now the only problem I am having in my scrotum is swollen and tender. I actually have fluid build up in my scrotum that is whats causing the most discomfort, its almost like a semi hard pad or block or something in my scrotum. Has anyone else had a problem with something similar. Thanks
Wow James! That’s pretty amazing – having your entire urethra replaced. Yeah, there were a lot of weird things involving the scrotum – usually because of the retraction tool/ring thingy they use to get it out of the way while they do the cutting. It was a few weeks before my scrotum swelling came down. And then it was many more months before the pain there went away – like 11 months or so, which is apparently not uncommon. My advice is to not be shy about calling your doctor’s office to ask about the scrotum (or any other) issue you may have questions about. I was told – when I asked about why my scrotum was still hurting after several weeks – that so much trauma was done in the procedure that the nerves got all wonky. It seems to be pretty variable a to the individual how long it will take to heal up. but what you describe doesn’t sound all that strange. But since I’m not a medical professional, you should definitely ask the docs and nurses about all this.
Good luck!
Ken
Thanks Ken I have gained a lot of knowledge from reading the stories here. I have an my first appointment post surgery this coming Monday and I will let y’all know how it goes. I can.t wait to get the catheters to see how much of a difference it makes. My doctor did tell me prior to the surgery that having the whole urethra replaced does have a lower success rate, I think he said its like only 80% effective compared to the 90% plus for only having a piece done. But after 12 years of multiple procedures and catheters I was willing to take that risk.
Yeah, I’ll take 80% over any of the other “treatments” for sure. Best of luck!!
Ken
Thanks. I’ll let you know how things go at my appointment Monday. I will be having a second procedure in about 6 months too. Skin grafts to the shaft of my penis to correct buried penis. Both my problems were caused by Lichen Sclerosis. Sure wish they could figure out what causes LS and how to cure it. Lucky for me all of this is service connected so its being taken care of by the VA, just not by VA Doctors. Take Care
That’s great James. I was taken care of by the VA too:).
Ken
6 Days prior to Urethroplasty
Hi Ken, great to read about everyone else experience with Urethroplasty.
I am 31 year old with a 2.5cm bulbar urethral stricture, with 2 prior urethrotomy. 1st age 19, which lasted for 10 years, and then at 29, which has now virtually closed up.
I am due to go in for a Urethroplasty with mucosal graft on Monday 25th April 2016
For the last six months I have been struggling with bouts of retention, mainly after excessive alcohol consumtion, where my urethra would close up, leaving me unable to urinate for 3 hours, then finally after exhaustive pushing, it would open, and gradually return to a very reduce flow, but enough to go about my daily routine without issue.
From my experience, it seemed my stricture got worse when drinking alcohol due to the increased amount of urine I had to pass, and the acidity of the urine. My stricture feels like an open wound which is constantly trying to heal, and excessive urination just aggravates it.
Urethrotomy seems to have been biding time, so I have decided to take the plunge and get the Urethroplasty done.
I am having it done at UCL London, under Professor Munday and Dr Andrich team.
I am hoping for a long term fix for my stricture, and feel the short amount of unpleasant recovery will be worth it.
Having the catheter in for 3 days after my urethrotomy was the worst part for me, as it restricted my activity, and ability to move around freely. So I’m not looking forward to being back on the tube for 3 weeks, but hoping it will past quickly.
I am slightly worried about the pain from the graft, were you able to speak properly after surgery?
I hope to update you after my surgery, and let you know how it went.
Hi Ryan. Thanks for your post. You’re definitely doing the right thing. Urethrotomy simply does not last unless your are VERY lucky. to put things in perspective – I had my catheter for 6 months:-P. As to your question about the buccal graft area hurting after surgery – I was lucky enough not to have the graft. My stricture was only about 1 cm, so they didn’t feel they needed it.
Best of luck with your surgery!
Ken
Hope everything went well for Ryan (above); Professor Mundy did my urethroplasty in February 2015. I saw him yesterday for a follow up and all is well, with strong flow. He and Ms Andrich really are the best in the UK. I am sure all will have gone brilliantly!
Thanks for that update, Simon! Great news:).
Ken
Hi there,
uretrothomy doesnt last yet his lasted over 10 years !!!How long would the graft last i wonder ?(might be headed that way as i had a bulbar stricture removed 5 years ago )
All the best
Ken,
might add the option of editting comments so we can fix our spelling mistakes :D:D:D:D:D:D:D:D:D:D
Thanks for the tip. I THINK I just managed to do that:-P.
Ken
Kras – These things are probabilities. There is less than a 50-50 chance that anyone’s urethrotomy will last more than a year. So that means some folks will get lucky and have one that lasts a long time. But the odds are not in your favor for a lifetime fix. That is what urethroplasty is – a high probability of a lifetime fix. If the bulbar stricture was repaired with a graft via urethroplasty, then the odds are pretty darned good that you’ll be good for many years – probably for life.
Hope that helps.
Ken
I am 5 weeks post urethroplasty. Catheter came out 2 weeks ago. After reading through a lot of the comments i now realize that the scrotum pain will probably be around a while. I am just curious if others have had pain still in incision at this stage of recovery. Some days it feels worse than after the surgery. Like I aggravated it, even though I really have been keeping a things as low profile as possible.
Yeah JD. There was a lot of nerve and tissue stuff going on down there. It seems a lot of folks respond differently, but from what I had and what my doc said, the variation in pain at that area doesn’t sound that improbable. As with everything involving this surgery, when in doubt you should always call your doctor’s office to ask and maybe have him examine you. I did that a few times. It made me feel better to know that they didn’t find anything abnormal.
Congrats on getting through the surgery and I hope the pain goes away soon.
Ken
I get the feeling that it is probably because I am not supporting the scrotum good all the time. It has gone back and forth. I’m ready to call the doctor then I wake up next morning and it’s much better. Etc….
Happy 1 Year Anniversary to me…
I thought I would provide an update. My story begins on this page (https://livingwithacatheter.com/1-year-anniversary-urethroplasty/#comments) starting with a June 5, 2015 entry.
It then continues on the page you are currently reading with an October 8, 2015 entry.
The length of my urethral stricture was 2.5 cm, and it was located at the perineum. One year ago today (6/12/2015) the stricture was removed via “end to end” urethroplasty.
UPDATE: This past Wendesday, 6/8, I visited my surgeon for uroflow and PVR tests. The uroflow showed a peak of 11 mL/sec, and the PVR showed I was empting the bladder completely. 11 mL/sec may sound low, but for a 65 year old male (yes I had this done at age 64), it is above average (9 mL/sec is average for a 65 year old male).
My hurdles
(1) Retention: My first episode of “full” retention (i.e., could not urinate at all) was 2 months after the urethroplasty surgery. My second episode was 12 days later, and the third episode was 32 days after that. The repair site was not the issue. At that point, my surgeon recommended that I learn to self cath. I have not had any episodes of retention since learning to self cath. I did “self cath” four times that I felt I was getting close to shutting down. I did perform the PT exercises that Dennis T posted on November 2, 2015 (see posting above – THANK YOU, Dennis T!!). So, between Dennis T’s PT exercises and the mental relief of knowing that I could self cath if my body did shut down, I have overcome retention.
(2) ED: I recall Ken telling me that when it came to his scrotum pain, it just took a long, long, long, long time to heal. Well for me it was ED, and finally at about 10 months things began to get better. So if you are reading this “post-op” and you are worried, give it lots of time and consult with your physician. For me, time worked its magic.
Summary: I lived with a 2.5 cm bulbar stricture for 50 years. That included countless urethra stretchings with a metal tool from 1966 to 1978, followed by SIX urethrotomies over the next 30 years. I definitely made the correct choice to have the urethroplasty one year ago.
If you are considering this journey, the two most important pieces are finding a qualified physician and educating yourself regarding this procedure. Everything you need is within the pages of this site. Thank you, Ken & this website community, for helping me be stricture free!
Thanks for that update Ned! That’s fantastic news. I’m so glad things are going so well. I’m also still doing well ALMOST 3 years after the surgery:).
Here’s to another year of free peeing:)!
Cheers!
Ken
Ned,
I have not checked the site in quite a while as things have been going well. I am very happy the PT exercises that I learned and helped me helped you. I will tell my physical therapist next Thursday that her good work was benefited by others.
I came back on the site tonight as last Friday I learned that while everything with my urethraplasty is going well and coming up on two years, I now have prostate cancer.
Trying to see if anyone that has had urethraplasty has then had prostate cancer and how it was treated.
Ned, I am glad you are doing well!
Thanks so much for the forum Ken!
Dennis – I’m so sorry to hear about the prostate cancer! So far, I do not have it. But I’ll certainly post if I do. I suppose that if there is a bright side or two, one is that you’ve done the living with a catheter thing once. I imagine all you learned about that will be useful if/when it comes around again while you fight the cancer.
Best of luck!
Ken
Can you give me names of doctors you recommend to do a redo of a urethroplasty, preferably on the east coast?
Thank you!
I don’t personally know of any. But hopefully someone else here can help. Have you tried doing a Google search for “urologists urethroplasty” then the name of your state? That usually gets you a good place to start.
Best of luck!
Ken
Thanks, Ken
Thanks for the website! Was recently diagnosed with a 1 cm stricture that I have been dealing with for 6 or so years. My urologist won’t do urethroplasty and referred me to a top doc at the University of Minnesota. Sadly, he is booked out 12 weeks, sigh. I am down to 4 or so ml/s but can pee for 2-3 mins, so my bladder isn’t doing too bad. Looking forward to this fall, and fixing this problem.
Charlie, you’re welcome! And you actually have a pretty good situation. 1 cm is small and can almost certainly be treated (if in the right place in the urethra) with just and end-to-end without a graft from inside your cheek. 3 months will hopefully go by pretty quickly. Best of luck, and let us know how it turns out.
Cheers,
Ken
Clinic called today, looks like they are getting me in Monday. More to come.
Well, looks like an End to End operation coming up Sept 2nd. Have a vacation in August I really wanted to be on and work is crazy until the end of August. It seems my Dr. (Sean Elliott) might be one of the top specialist in the country, his name is on the american urological association diagnosis and treatment guidelines for Strictures. Also has hundreds of studies with his name on them for Strictures. Says he does about 80 of these a year.
Asked a lot of questions, he had a lot of responses, I guess there is a 30% chance with an End to End, of length reduction in penis. Anyone have this happen? I am hoping my small 1 cm or less stricture doesn’t have this issue.
I am getting my mind set on fixing this problem and am oddly excited to have my urethra cut into. U of MN does this procedure out patient, am an little worried about the ride home.
Any tips from the pros on recovery?
I already plan on buying a sport jock strap and spending long days drugged up playing xbox. I would like to be able to sit at my PC at home, any ideas on how to make this comfortable?
Charlie – you sound like you’re in great hands! I like your drug-and-XBox plan:). Sitting at your PC you will be more comfortable at least sitting on a pillow. For weeks after my surgery I used one of those donut pillows on TOP of a regular pillow. AND I did a lot of reclining in a recliner or in some way sitting back in whatever chair I was in. Hope that helps. good luck!
Cheers,
Ken
Hi all. I’m 32 and have been dealing with strictures for about 14 years now. I had a urethroplasty back on the 16th and the catheter came out today. Doc say no restrictions other than not lifting over 20lbs. Thinks seem to be progressing ok, I did not need a graft, the surgeon said he removed about 1cm of urethra. He said he did do some things to my penis in surgery to keep it from being shorter do to the procedure. So the penis is still pretty bruised and tender and I still have a hard swollen spot in my scrotum just above the incision site. Doc said it is blood and my body will break it down on it’s own. I’ve had some bleeding after urination out of the penis I’m assuming this is normal though as the catheter was just removed. Doctor also said sex was OK. Wife pretty much jumped my bones as soon as we got home, which was interesting, I’m not sure how enjoyable it was as my penis is pretty sore still but I was able to climax. All and all I think everything is going well. I really hope this is the fix long term because after more than a decade of dilations and other attempts to fix it.
Congrats Ian! The stats say that this surgery has well over a 90% chance of being a long-term fix. So the odds are in your favor (to quote Hunger Games:)). It sounds like your surgery was ver similar to mine – 1 cm stricture with no graft. It’s 3 years after my surgery and things are going great.
Thanks for the comment. good luck moving forward!
Ken
How long until you felt “normal” again? Do you remember?
It took many months for me. In fact, there was pain in my scrotum for about 10 or 11 months, gradually decreasing over that period of time.
I was able to do all the normal things in my life within a couple of weeks. But I didn’t FEEL totally normal for just under a year.
Hope that helps.
Ken
Same experience for me, Ian. I am currently at 1 year and 3 weeks, and I finally feel normal and really good. I was also able to do all of the normal things (except sex) within a couple of weeks, but I didn’t feel “back to normal” until I hit the one year mark. I cannot imagine having sex as soon as the catheter came out; Never would have happened for me. Perhaps at your age you are a little bit ahead of the healing curve. The body heals miraculously, but my experience is all those cut nerves need almost a whole year to really heal fully so that you feel normal again.
That makes me feel a lot better because while most of my ability to do things has returned (still have the restrictions by the doc in place) I still get weird sensations. Last couple of days I’ve got these random twinges of pain that keep flaring up in my scrotum. Not debilitating but they just kind of show up and then go away. Also did anyone else have this weird hard spot in their scrotum? The doctor seemed less than concerned and indicated it would go away on it’s own. Just curious how long anyone else’s lasted. I’m looking forward (and not) to restarting my lifting routine. I know I’ve lost some gains fitness wise and there is going to be a lot muscle soreness when I get back into it after all the laying around I did during the recovery process.
Yes, I had that weird hard spot, and it’s only been gone for the last 3 weeks. In other words, it stayed for one whole year. I asked about it 17 days after the surgery and my doctor told me that he was not concerned. He said that it would take a long time to go away. I had no idea mine would last a year.
Ugh! When he said it would go away on it’s own assumed I was looking at a few weeks maybe a month or two tops. I wasn’t expecting a year. Do you exercise at all? If so did it bother you? I also train Jiu Jitsu and I’m thinking rolling might be a nightmare even with a cup. Right now it feels like it would really get in the way while I was working out. I feel like it’s always pushing up agains one of my testes. Sorry for all the questions. Doctor’s office always feels so in and out and while I think he does care and seems like a good doctor, a lot of questions come up after and it’s nice to be able to pick the brain of someone thats been though this.
Hi Ian,
Perhaps yours will go away in a month or two. Everyone is different. My experience was that the hard spot in the scrotum took a year to disappear. It didn’t bother me once the tenderness went away; It was just there. Yes, I’ve been very athletic all of my life. My doctor held me back on returning to running and weight lifting. Looking back, it was the best thing he did for me. My body needed one thing to heal; TIME.
As someone who has been through this, my advise is to be patient so that you don’t end up being a long term medical patient. You can certainly do more harm than good by trying to do too much too soon. Your repair site is still new, and you don’t want to risk more scar tissue or something worse.
Regarding my appointments, I wrote down my questions before my appointments, and my doctor got so used to seeing my list that he would ask for it. Of course, just like you, after I’d leave the office I’d still think of something else that I wanted to ask. That’s when I would call his nursing staff; If they didn’t know, they would ask him and get back to me.
I know that feeling of wanting to get back to where you were prior to surgery, but the best thing you can do is relax, lay back, don’t fight it and let your body have time to heal. Things will heal but it needs time.
I remember asking Ken in a post just 48 hours after my surgery, “When will this bruising & swelling go away?” I saved what he wrote, and it helped me a lot through every milestone. Ken wrote, “This surgery completely reset my expectations for how long things take to heal – from “days-to-weeks” up into the “weeks-to-months” category.” It’s so true; Don’t fight it and above all keep asking your medical team for advise. Then you can be reassured you’re on track.
Sending you healing wishes,
Ned
Ian,
I am going under the knife for an end to end as well in a couple weeks, we are similar in age. Any tips that made life with a cath. livable? I have read a lot of Ken’s but looking to see if anyone has improved?
Are you currently able to sit for long periods? Have you done any long car rides or flights?
Sorry I was away from this for a little while. I’m just over a month post op. The Dr has basically lifted all of the restriction. I have started working out again and I’m sore (just muscles) and out of shape. My scrotum does still have a hard spot next to the left side. I’m really able at this point to sit for long periods comfortably though I still wear the scrotal supports daily as my incision and the hard spot are still pretty tender to the touch. I am a police detective so I spend most days sitting in an office and or riding in a crown victoria. I am completely comfortable doing so at this point. I’m not going to lie, the week or two after the procedure are pretty awful I think I didn’t even care about the cath for the first 10 days or so after because of all the other soreness. After I needed the bladder spasm meds because I was having spasms that were causing bleeding into the urine bag and around the edges of the tube. I think the thing that bothers me the most is I’ve lost some length on my penis. My wife seems to be ok with it and it’s probably bugging me more than anything else. Also because of some of the swelling (and I think wearing the scrotal support daily) my scrotum sits higher than I used to. I haven’t had any bleeding from the incision or clots in my urine in a while so all and all things are going well. I’ll be honest, The procedure it really unpleasant but I’d say worth it if it fixes all my problems.
Thanks for the update, from what I have read and what my doctor has told me, the length will regain over time. The studies show normal length after 6-12 months especially with end to end.
Glad to hear your day to day is getting back to normal, thats my biggest worry, I am in and out of my car and desk all day, a lot like you.
I am 5 weeks and 6 days away, I just want it over with so I can pee normal again. Currently am paranoid that I will seal up and that another stricture has formed as a result of the retrograde urethral.
I understand the wanting to get it over with. I was originally scheduled to have this done on May 3rd. The doctors office booked at a hospital that my insurance isn’t networked with by mistake and had to cancel and reschedule. They didn’t realize the error until a few days before hand. So I had to cancel my scheduled off time at work. Well my wife and I were scheduled for a vacation to the caribbean that left on June 5th. They come back and want to schedule the surgery for the 20th. I tell them no way I’m going on vacation 2 weeks post op. So we actually pushed it to 3 days after we got back from vacation and all I could worry about on vacation was that my stricture would close off and I’d have to get some caribbean doctor to run a cath. It didn’t happen though and I was able to enjoy my vacation. Hang in there and feel free to ask us anything. I know it’s stressful and it really helped me to be able to come on here and ask guys stuff.
Thanks for the updates, Ian! Glad you’re recovering and things are looking up. sorry to hear about the issues. But like you say, overall it is worth it.
good luck moving forward!
Ken
Ian,
We could be twins! Same story right now, they had me scheduled for Aug 5th, but I will be in the Dominican for a week after that. Same fear that I will seal up and have to get a superpubic. The good news is the vacation is work related for my wife and they have emergency medical evacuation insurance.
I am sure the week or so before I will have a bunch of catheter questions.
Ian it is another month! How are you two months post op?
Hi Ken,
It has been a while since I didn’t post an update. I am now almost 11 monthes after my end to end surgery. My last appointment with my Professor in Nice (France) was on the 10th, May 2016. the exam showed that I completly empty my bladder and the flow was strong. No worries about erections either. He gave me on the first time Cialis in case I feel a weakness but it has been alomost 6 monthes since I don’t need it anymore.
Lately, I feel like that i still have some urine in my urethra. It stayes there and I can feel. I did 2 days ago a bladder exam and it shows that I empty my bladder. However, I really still have the feeling that some dropes stay in my urethra. Lately, my erections had weakened. I took an appointment with the Professor next Tuesday. I am very worried. Also, I still take it easy ( no weigh lifting, no hard sport, I only walk a lot).
Do you ever heard or experience about this? I really hope it is not the return of the stenosis?
Till today the Professor didn’t look with the fibroscopy instrument inside my urethra to see the surgery point. I only did the bladder exam and the flow check?
He said it is better that he doesn’t introduce the fibroscope inside?
Hi Salim. I’m glad to hear the surgery seems to have worked. But I am sorry to hear that you’re having some issues. I think the doctor is right about not putting a scope inside. It might be risky.
Yes, I do sometimes have a weak flow. And also sometimes it feels like there is still some pee in the urethra. But one thing I learned really well in the 5 months of having the SP catheter in was that the bladder is CONSTANTLY pushing pee out. That’s its job, and it never really turns off. So even after you have taken a pee, your bladder is still pushing out. Any new fluid that enters would be pushed out except that your body learns to keep that pee in unconsciously. What I’m trying to say is that it is not unusual for there to be more pee after you feel like you’re done because your bladder just keeps pushing it out all the time. For me, the strong pee stream comes back if I’ve been active and walking around. And if I’ve been sitting down a lot, I might have a weak stream. It doesn’t mean the stricture is coming back.
So I wouldn’t worry too much about it unless you find from a test that you are not emptying your bladder.
I hope that helps.
Good luck!
Ken
Hi Salim & Ken,
I will share what my surgeon told me. He said the bladder is a muscle. What he told me is that if you have lived with a stricture for a considerable length of time, the bladder muscle weekens and is not able to push as hard as it did when you were very young, especially as the bladder becomes full. It’s been a year and 2 months since my end to end urethroplasty. I just learned this at my 1 year follow up visit. The reason I had this discussion is because when I sleep through the night without getting up to pee (typically 7 hours), I have found that I have a very weak stream in the morning. However, the next time I pee (2 or 3 hours later), my strong stream is back. My surgeon said that my bladder muscle was already weakened over the years I lived with a stricture because the bladder had to push so hard to get a stream through the stricture. He also said when the bladder becomes more full (such as sleeping 7 or 8 hours without getting up to pee), the bladder is not able to push as hard, and therefore the stream will be weaker.
My logic believed that a full bladder would be able to push harder, but he explained that the muscles in the bladder that push become less able to push as the bladder swells. People who have never had a distended bladder do not have this problem, but those of us who have experienced a distended bladder can experience this.
After hearing this, I tried an experiment. I set an alarm clock for 2.5 hours so that I would get up to pee twice and not sleep through the night. Sure enough, my stream remained strong. The next night I set the alarm for every 3 hours, and still was able to maintain a strong stream. I found that if I set the alarm to wake up every 4 hours, my stream begins to weaken. And when I do sleep through the night, my steam is quite weak in the morning. I have repeated this experiment several times, and have experienced the same result each time. Now that I understand what causes the weakness in my stream, I have no worries.
Hope this also helps & best wishes!
Ned
Thanks for that Ned!
Ken
Hi,
I went through an urethroplasty surgery 10th September 2015. After 3 month of the operation it started paining while peeing and i am feeling this pain till now. I consulted with my doctor but he told that the pain can be there for one year after operation. The flow of urine is also reduced and now sometimes i feel severe pain while passing urine.
Is there any body who went through an urethroplasty surgery, please share your experience. It will help me a lot to build my courage.
Hi Krishna. Sorry to hear you’re having problems. What kind of urethroplasty did you have?
Hope someone else here can shed some light. Maybe you can consult another doctor?
Ken
Thanks a lot Ned and Ken.
I saw my Professor yesterday. Things seem better now after taking 2 times some Cialis and having some rest.
The fact of sitting longer hours on a chair and carrying sometimes heavy things at my job have a bad effect on my peeing strenght.
Anyway, things get back to normal now. Thanks again Ken.
You’re welcome! Glad to hear things are looking up.
Ken
Sept 2nd is coming up quick! Had my Dominican Vacation last week and drank too much a few nights, spent the entire night peeing those nights. Hoping this procedure fixes that?
Where did you guys buy Cath supplies? I don’t want to monkey with having to wash my bags and what not too often, so I am planning on buying a ton of bags
Charlie,
You can get cath supplies on-line or from your hospital (who sometimes are happy to give you them free). Here is a link to get 10 Hollister Leg Bags from Amazon. You can also get straps, bedside bags and tube extensions from them as well.
As for washing bags, I refer you to the results of a clinical study showing the following:
There is no evidence that Antimicrobial coated catheters reduce the amount of bacteria or the likelihood of UTI.
There is no evidence that cranberry products reduce catheter associated bacteria or the liklihood of UTI.
There is no evidence that daily meatal (opening of the urethra) cleansing reduces the risk of UTI.
There is no evidence that catheter irrigation with either antimicrobials or normal saline reduces risk of UTI.
There is no evidence that adding antimicrobials or antiseptics to the drainage bag reduces the amount of bacteria or risk of UTI.
There is no evidence that routine catheter change (like every 2-4 weeks) reduces the risk of bacteria or UTI.
Hope all that helps.
Ken
Surgery was Friday AM from 7 to 1130. Dr. Told the wife everything went well. Not sure how much they removed, but it was an end to end. Sent me home same day, I was pretty out of it until later at night. Pain so far has been minimal. Only complication so far is my right foot being numb, due to the position I was in for the surgery. It’s slowly getting better, but very annoying. Pushing lots of fluids out and figuring out the catheter. Cath out Sept 19. Ken thanks for the site. It’s been a lifesaver.
Hang in there man. It will seem like a terrible memory before long. Most of my day to day stuff has faded. The incision on the scrotum can still be tender sometimes especially if I sit down quickly on a hard surface and it still feels to me like the whole scrotal area doesn’t rest the same when I’m standing but most of the pain is gone. No scrotal supports except for the rare day when it’s feeling tender. Every now and again my left test will be really tender but overall the symptoms continue to fade. As far as stream goes I’m coming up on 3 months post op and still peeing like a fire hose. All and all things are still going well. You’ll get there before long. Don’t overdo it when the cath comes out. Take it easy, your body just underwent a pretty invasive surgery.
Ian,
Thanks for the reply. Honestly I feel great. Hard to think I had surgery a few days ago, but I am able to walk, shower and sleep no problem. My foot is still slightly numb, but am assured that will continued to get better.
I do get a little light headed if I stay standing too long, but have been walking up and down the block with my bed bag (people stare, I love it).
I do get the occasional urethral pain, I consider these bladder spasms, as it feels like I am trying to pee and I swear I can feel every single stitch inside and out.
Ill update on a weekly status as I get better. But so far I have enjoyed 5 days in my recliner watching Netflix and playing CSGO on my laptop. Not too bad of a deal if you ask me. I am lucky though, my wife took this week off to help take care of me.
Today is day 6, I have been wearing a jock strap with a large wad of gauze at the incision since day 1. No pain from this area unless sneeze, cough or get up weird. I have had a few erections, wake up ice them down and go back to sleep. Annoying more then painful. I took 10 MG of oxy every 6 hours for the first 3 days, the last 2 days I cut down to 5 MG when I wake-up and at bed time. Today I only just took one before bed, hopefully to help me sleep a little better.
I also have been taking anti-bladder spasm pills every day, 3 times a day. My Dr. also gave me a daily antibiotic. I believe Macrobid.
I have taken a shower every day, pad dry the wound. Testicle sack is blue as blue can be and as everyone else has said, had a harder area of buildup in the bottom of it.
Put on a real pair of pants today and went to Target for an hour with my wife today. No issues, just really tired.
Feeling in my foot is almost completely returned. My big toe is the last hold out, hopeful it returns this week.
Life is good, pain is a 1 or 2 out of 10, catheter is annoying but manageable. The worst consistent pain, the tip of my penis, still have yet to find a great way to secure the catheter. Sigh.
Thanks for posting Charlie. Sounds like things are going well. I may have a catheter securement solution for you! The Grip-Loks like I used (and don’t know what I would have done without!) are now available to order one at a time!! I have found a vendor to add that to their prodcut list and you can order them like that – for $5.69 apiece (US)! Here is the link for that.
I hope that helps you out!
Thanks again for your post.
Ken
Hi Ken
thanks for setting up this blog. It has been invaluable to me. I wanted to share my experience of urethroplasty to help others.
I had urethroplasty with a buccal mucosa graft to correct a 3 cm stricture on 1st september. This is after 2 previously failed urethrotomies in 2005 and 2007. I then decided to live with the stricture for the next 8 years – I could pee, just slowy, but when symptoms worsened I opted for the surgery. I was given a spinal block as well as a general aneaesthetic. It seemed to work well, when I woke up after surgery, pain in my perenium was minimal. In fact, it was worse in my mouth but even that wasn’t too bad. I was discharged from hospital the next day with co-codamol for pain, two mouthwashes (one analgesic, one antiseptic) and antibiotics.
Pain continued to be a non issue on days 1 and 2 (day 0 being the day of the surgery). It hurt but the tablets were helping. Unlike other reports I’ve read, I was lucky to have minimal swelling around my scrotum. The hardest part for me was (and on day 9, still is) the catheter. I find them to be so irritating! The slightest movement/pull on the catheter feels very uncomfortable. I was given velcro thigh strap by the hospital which helps a little. I’ve not been able t get the adhesive catheter holders you talked about.
On days 3 and 4 the pain got slightly worse. The actual site of the incision was hurting now rather than just general pain in that area. Ice packs helped.
At night time on day 4 I started getting severe constipation. Neither my surgeon nor the nurses had warned me that the co-codamol would constipate me. Had I known that, I would have taken stool softeners well in advance. I ended up taking Dulcoease stool softener and Lactulose for constipation. Finally, on day 5, I had a bowel movement in the morning after 3 hours of straining and I’m sorry to say it was painful! My advice to anyone else having surgery would be to only have a light meal before the surgery and take a stool softener in the days prior.
I am currently on day 8. The last 3 days have been a bit of a mixed bag. I’ve developed some “nappy rash” on my scrotum despite showering and properly drying that area twice a day. I’m using nappy rash cream which helps. However, the catheter has become somewhat easier to live with. I find it helps to sit up in bed sitting on very soft cushions, or lie completely flat on my back. This greatly reduces the irritation but it isn’t always practical. Speaking of showering, the leg bag was causing problems for me in the shower so now i just disconnect it and let the catheter hang loose. I know they say not to do that due to the risk of contamination, but it makes a world of difference and it means I can wash and dress myself with minimal pain.
I am due to have the catheter removed next thursday. I know my doctor will be doing a flow test but he hasn’t mentioned a voiding xray so I’m not sure if that’s something they normally do at my hospital. I will post another update after the catheter has been removed.
thanks
Alan
Allan sounds like you and I had procedures on the same day! Sorry to hear about your issues. I guess we all have our own, mine was some nerve damage in my right foot which is mostly healed. But still feels a little strange! Hopefully we both heal up quickly!!!
Hi Charlie
I am two days from having the catheter removed and I’m counting the minutes and seconds! I find it more irritating than painful, and I can’t wait to be rid of it.
I hope your recovery is going well
Alan
Exciting! I agree with your summary. I found taping down my cath line upwards helps a lot. I also put a lot of gauze in my jock strap to limit movement of my penis, this has helped a lot as well.
I sadly do not get mine out until the 19th.
Did they yank it out Alan?
Just a note I’ve had the adhesive and Velcro strap for catheters and in my opinion the strap is so much better. The adhesive ones will come un-adhered constantly and make the tug and pull worse. The strap may move but is easy to move back into position and re tighten if needed. Hoping the rest of your recovery goes smoothly! I feel for you! It’s not horrible just uncomfortable more than anything from my experience.
Hi Jonathan. Thanks for your comments and best wishes on a speedy recovery.
I wanted to let you and everyone else know that the Grip-Lok adhesive holders are now available to buy 1 at a time!! This is huge, because up to now, you could only get them 100 at a time for like $400! If anyone is interested in buying a few of the Grip-Loks, CLICK HERE.
Jonathan – can I ask which adhesive securement products you tried? I never tried the Stat-Lock one. But I can testify that the Grip-Lok never came un-adhered for me! It even saved me from a potentially catastrophic accident one time when I was wearing a bed-side bag and caught the tube on something as I walked by. It pulled HARD and would have done some serious damage if that Grip-Lok hadn’t held fast! Now the edges of the sticker will sort of pull away from the skin as you walk and bend your leg. But the important strong center stays tight for almost a week (at least for me). I suppose the differences in skin (oily or dry, etc) would account for variation from person to person. But I would RELLY like to know if your issues came from a Grip-Lok or a Stat-Lock.
Thanks again!!
Ken
Hey not sure which one it was. Was one they put on me at the hospital once. They didn’t shave my leg either so may have been the issue.
Thanks for your post, Alan! You’re going to be so happy when that catheter comes out:).
I found that using a cortisone cream on my scrotum helped. I don’t think I got the nappy rash, but it was always so sore that it would have been hard to tell. The CortAid (cortisone) cream helped quite a bit as there is some anesthetic in it.
Best of luck!
Ken
So I had urethroplasty with buccal mucosa graft done by Dr. Broderick at Mayo Clinic in Jacksonville, Fl. Great doc and it wasn’t as bad as I had thought it would be. I had a foley cath for 28 days because at 18 days the radiograph showed I wasn’t healed enough for removal. They gave me another 10 days and then removed the catheter. After the removal when I’m sitting and lean forward or squeeze my legs together I leak from the penis. Doc said he wasn’t worried about this as it can happen and should go away. Anyone else have this and how long did it last?
So my leaking issue has almost gone away. But last night I had an erection and had some pain. Has anyone else experienced this? It’s odd as I had some erections when I had my catheter and had no pain at all. Is this abnormal?
Jonathan, I am post op 14 days, but painful erections was a listed complications from one of the studies I read, something like 35% of patients report painful erections in the first 6 months, after 6 months it goes down to like 10%.
Ok so not abnormal and should go away. It’s just odd that I had no issue with it when I had the catheter. Wonder what happened?
My experience so far with catheter erections is they really don’t get full. Now that you are cath free, your penis can develop a full erection and that would include the bulbar area of your urethra.
Talk to your doc if it continues to concern you.
Well I had the catheter removed yesterday, 2 weeks after the surgery, and it feels wonderful!! My mobility has drastically improved to the point where I’m able to walk and climb stairs almost normally.
My penis feels a bit bruised, and erections are still painful but from reading online that seems normal. I’m currently having to pee every 90 mins or so, and I get very little warning when I need to go. I’m also a little incontinent after I’ve urinates but the nurse said to expect all this and it would settle in about a week or so.
The incision site seems to have gotten a little more painful, perhaps because of the increased mobility …? When I had the catheter in, I was comfortable if I sat up in bed and stayed still. Now it seems I can’t be in the same position for more than 30 mins without feeling uncomfortable. Hopefully that will settle soon as well.
My flow rate is good, 28ml / sec. They did not do any kind of x-ray so I can’t comment on how well the graft has taken.
All in all, I’m much happier now than when I had the catheter. I’m actually planning my return to work now which was unthinkable before ( I’m a teacher)
Alan
Glad to hear recovery is going well and you are catheter free! Man I hate those things! I had urine leakage pretty well for about 5 days and I still have some after urination but it isn’t much. It only seems to happen after urination and when I sit down or squeeze my legs together. I have days where it seems like it gets better than days where it seems like there is no progress and I’m a week without catheter. I do feel like it is one of the things the body just has to get back into normal function with. I also had the catheter for 28 days so my bladder and the region did nothing for that long.
My first post op follow up they did the radiograph x-ray and found I wasn’t quite water tight. A week later I returned and they just took the catheter out as they felt I was ok. My graft/patch was also 6cm so could have contributed to that some.
Alan how are things?
Catheter comes out Monday! Hopefully it stays out. Recovery has been rather good, 1 week of bed rest and I was pretty good. Was able to drive this week and go shopping a few times.
Woohoo to catheter free man! That was a good day in this process for me. Stuff still doesn’t feel “normal” down there. Still get twinges of pain in the scrotum particularly on my left side (they must have used some extra clamps or something over there). Erections can be a bit painfully almost feels like tissue is stretching. I wan’t end to end. The just cut the car out and reattached the ends. So doc said there may be some stretching sensation until everything normalizes. Have a follow up here in a few weeks. Hope all is going well for the rest of you guys.
Yes catheter removal day was so great!!!! Just a note because it happened to me. The doc may do a Radiograph to check for water tightness and if you don’t pass, may leave the catheter in for some extended time. I was caught off guard by this so it crushed my spirits. I also didn’t do a whole lot with the catheter in as I was just uncomfortable and feared the potential for things to happen. I do hope for your sake though the catheter comes out!
I am 5 weeks post op and still have pain when sitting certain ways or on certain chairs, some pain with erection even though it seems to be just more discomfort at this time, and leaking after urination some. All seems to be getting better and doc says it’s all just part of the healing process.
18 some hours to go! Hopefully everything is healed up, I am hoping it is. I feel like it is, I know it has only been 16 days, but I feel great. I have been moving all week, shopping with my wife, walking the dog and doing some light duty household chores. Heck we even went to a wedding yesterday.
Sneezing and coughing is possible again with no pain. I remember 5 hours after surgery I sneezed or coughed and thought the world was going to end. I could feel every single stitch they had done.
The only pain I have got this week is related to the catheter, bladder pain/spasms mainly or tip of my penis.
Hoping tomorrow goes well and hoping my bladder remembers how to pee completely.
THIS SITE HAS BEEN GREAT. In fact Ken I think my Dr. should be paying you, this site must have saved him 10,000 questions.
Good luck Charlie! I hope the catheter removal is a complete non-event and that the flow test /x-ray shows good results!
Well, I failed the test. Small leak. Catheter for two more weeks. They put a smaller one in this time, last one was a harder silicone, this one feels like latex. Much more comfortable.
The doctor explained why. That urine leaking can cause inflammation, inflammation can cause scar tissue and as we all know, strictures are scar tissue. So ill live with it, not a big deal. But slightly demoralizing.
Was told they removed 2 to 2.5 CM of my urethra.
For the short while the catheter was out things didn’t look too bad. When I peed for the test, it felt like nothing at all. Is this what peeing is suppose to feel like? 500 mL in 20 or so seconds. Doctor also said that the imaging showed I emptied my bladder. Which is good news as pre-surgery I was holding back 250-350 mL.
Oct. 3rd is the new day! Hopefully its healed up by then. I still feel great, and I got a a lot of new supplies while at the clinic, so these two weeks should be better!
Hate that you had to return home with another catheter but exactly what happened to me. I went in like 3 days shy of 3 weeks and then had it for another week. After that the doc was confident enough that I was ok he just removed the catheter. Better safe than sorry. Glad to hear your experience is better then mine I didn’t leave the house for a month! My issues were the same they had a size 20 cath in and then out an 18 in so I could heal up. Bladder spasms caused me issues as well so they put me on Detrol LA. First time I peed after the catheter came out I was like whoa…that was quick and I barely felt it. My issue had to be going on for years…like 20 or more. Just didn’t decided to really show itself until 2 years ago. My leaking is almost done as well it seems. Now it’s just enough to know it happens but I can tolerate it. Hope everything goes good from here on as well!
Hi Charlie
I’m sorry to hear the catheter had to be put back but I’m glad to see you’re staying positive. Like Jonathan said, better safe than sorry. At my hospital they didn’t even do any kind of x-ray so I have no idea if the urethra has healed properly.
Keep us posted
Alan
Hang in there Charlie. I know that had to sting a little bit. People keep talking about this flow test. They never did one with me. They filled my bladder, had me pee into a cup and make sure what they put in came out (maybe this is what their talking about) but there was no X-rays or any other equipment. Once I peed doc said i was good to go and kicked me out the door. Hang in there. Oh and yes peeing with full stream is amazing.
Seems like different doctors different requirements. I also think since mine was done at a university hospital, that they might be a little more detailed with their work as I am more than likely part of some study. So it is important that standards be followed.
1 Week.
Good luck Charlie!
Ken
Hi Ken,
I am exacly ONE year and 06 days after my end to end urethroplasty. I did 3 days ago a bladder test and it shows that I empty my bladder. Sometimes I don’t feel that I do empty it, some other times I had A weak sream and even a weakening in my erections. But all this last few days and then I am panicked so I do the bladder test and it shows that I empty my bladder. Regarding erections I have sometimes to take Cialis and then again everything becomes just fine.
1) Do you also live with the threat that the stenosis might be back again anytime?
2) In your opinion, Does the bladder test the only criterium to determine that we ‘re fine despite the symptoms we experience sometimes ( weakeness of erection, flow stream,…)?
3) When will be your next anniversary in which you’ll celebrate I guess th 3 rd year after your urethroplasty?
Congrats Salim!
1. I do sometimes worry a bit. But so far so good.
2. The bladder test is not THE only way to know. If we start experiencing more severe symptoms (pain when urinating, weak stream that lasts for days or weeks, etc.), we can go in for scope exam where they can see if there is a stricture recurring.
3. I just had my 3rd anniversary in July 2016:).
Best of luck moving forward!
Ken
Catheter is out! Not sure if there is still a small leak or not, radiologist wasn’t 100% sure, but my urologist didn’t think it was a leak anymore.
No idea what my rate is, but I must of had this damned this my entire life. I have never peed like this this, ever. A little pain during and after but nothing more than before, considerably less actually.
I go back in two months for a follow up, rate test and camera. Hopefully that goes well!
That’s awesome, Charlie! It’s a great feeling isn’t it?
Thanks for posting!
Ken
I don’t even know how to describe it. I estimate my flow rate around 30-35 mL. Its amazing.
excellent news Charlie! I’m glad it’s been sorted. I hope your recovery continues to go well.
First erection tonight without Cath. Had to abort because of pain in the surgical area. I am assuming others had this issue as well??
Hey everyone, I just wanted to let you know I posted my story in the forum and will be updating there. I suggest Ian, Salim, Alan, Jonathan and others do the same. It is a lot easier to track each persons progress. The link is on the top right of the site “Forum”.
Update:
Things are good! Peeing is great, erections seem to be getting better.
Only annoyance is still some foot and leg pain that I mentioned earlier, looks like these might take longer to get better than thought. But they do seem to be progressing.
So far again this surgery is life changing and totally worth it.
Thanks for the update, Charlie!
Ken
Hi.
I’m 37 years old from Norway and reading all these stories and experiences I thought I’d chime in.
Back when I was 14 or 15 I had an accident on by bike. While cycling the chain snapped off and my scrotum landed on the bike frame. Hurt like hell, but I didn’t think much of it. I remember there was some blood in the urine however I didn’t pay it much attention as it went away. However during the next few years this would gradually turn into less flow and more pain while peeing. Fast forward to now, after having been to a doctor in my teens, then again in my twenties and then again in my thirties. Finally they found the root cause, 2.5cm stricture in my urethra.
I’m now 4 weeks post-operation, buccal mucosal graft, to repair the 2.5cm stricture. Waking up after the operation my mouth wasn’t too bad however my face felt like it had been through a fight, I was sore in my scrotum and my bladder didn’t really care much for the catheter. However after 3 days at the hospital, only lying down on my back, I traveled home. I felt much better.
3 weeks after my operation the catheter came out, did an x-ray with contrast and a flow test. All good, no leaking. Here in Norway we are instructed to use a donut shaped pillow every time we sit, for three months. Something which is annoying. There are a lot of places where I can’t sit as I can’t drag my donut around everywhere (it is quite large). I often end up sitting on my tail-bone on public transport or standing. Now 10 days after catheter removal I still have a strong flow, however I sometimes have a burning sensation which gradually comes when I pee. this is worrying me and I’m scared the operation has failed. I called the hospital and talked to a nurse, she told me to relax and if it gets worse go check yourself for a urinary infection. I’m doing this tomorrow morning however I can’t seem to let go of that worry. I don’t really want to go through this again, and probably won’t for a while either as having two small children wasn’t very compatible with this operation.
So the question, anyone else experience some kind of burning while peeing shortly after the operation? I’m going back for a check up in 2 months. The surgeon is near impossible to get hold of. I can only get my GP on the line and probably need him to get in touch with the surgeon to expedite the check-up if the burning doesn’t go away.
Thanks everyone, really great to be able to read stories about a seemingly rare condition. At the hospital, for the first time I met others with the same condition and we shared war stories. Which was fun.
Hi Sig,
Thanks for your comment! Your story sounds very similar to mine. It started with occasional blood in the urine but only sometimes. Then as much as a year later the flow had gradually slowed until it was a real concern and after several wrong diagnoses (they always want to blame the prostate!) they dx’d stricture. I had a lot of pain and the donut-sitting for months – many months after my surgery. I kept calling the Urology department. Even though – like you – I was unable ever to talk to the surgeon until like my 3-month check, I still spoke with urologists rather than my GP. I called them directly. Can you do that? I think GP’s are generally (ha!) clueless about strictures. I don’t recall having stinging in the urethra when I peed. But I had a much shorter stricture than you, and I didn’t have a graft. So it could be from that? I always advise people to bug the crap out of their urology folks until you get the answers you need. I felt like a bit of a a pest at first, until I didn’t:). It’s your body. They aren’t going through what you are. So just keep asking, if you can, until you get some answers. I really hope that burning goes away soon.
Good luck!
Ken
Hi Ken.
3 months in, still doing good. Stream is the same, very good. Early I had some leakage after peeing, however being patient and pressing the scrotum area usually helps. Or sitting while peeing. Which is quite relaxing. But it’s getting better as time passes.
The burning is still there some times, however maybe not as much so it might be a case of time heals. I am going back for control at the surgeon in a few days.
All in all, very happy with the recovery and with the operation. Peeing is now still giving me a grin, especially after having a few beers too many and no pain while it’s passing through the system.
I did have to remove my Appendix though 6 weeks after the urethroplasty, unrelated for the record. Insisted on no catheter while sleeping so the surgeon had to comply. Didn’t want to risk any more damage to this area.
Anyway, looking forward to the next 3 months without any pain or trouble passing urine.
Thanks Ken.
Thanks for the update, Sig! It’s amazing how much pleasure just being able to pee can bring us, right? Best wishes moving forward!
Ken
Hey Sig, I hope you’re still getting notifications to see this. I had a urethoplasty about a month ago and had my catheter taken out 4 days ago. I’m having some slight burning when i pee too – i’m curious if your burning ever resolved completely? …it’s only 4 days after catheter removal so i’m sure (hoping) the this is just irritation from that but am curious to hear your update.
John B.
Hi John. Sorry for the late reply.
I went for my last checkup at the hospital back in November ’17 and a relapse/reoccurance of the stricture was detected in a flow test. I was a bit suprised as I had not really thought about the flow being worse. But the flow test did indicate a fairly large relapse and has become worse since, with 2-3 near complete flow stops. Also went in for an xray of the urethra with contrast and it showed the same, a stricture in the same spot.
I’m scheduled for a new surgery in 8 days. Probably why I’m here again and saw your post, as I’m anxious and nervous. But in good spirits, but I’m not as confident as last time. It took 1.5 years for the relapse to properly show, so I will probably be anxious and over sensitive of peeing the next couple of years.
As I mentioned post surgery I had some slight burning directly after catheter removal, but the burning now is much more intense than directly post catheter removal (while not nearly as intense as pre first surgery), so I guess that’s an indication of a relapse. The doctor didn’t really answer/comment on the burning when I mentioned it during my checkups. My theory is that the surgeon did not get the entire stricture and he won’t admit it. Or it might have just come back.
I’m unsure of the technical stuff here, but last time they transplanted skin into the upper area of the urethra. This time they are doing the lower and taking skin graft from my other cheek. This time they can sow it in place while last time they couldn’t and had to trust blood flow to make it “stick”. Very unsure of the tech stuff here, but either way they should’ve done both last time in my oppinion. The slight burning was probably an indication that the stricture was not entirely covered by the transplanted skin.
Crossing my fingers for success this time. Positives are 1 week less with catheter (2 instead of 3), 1 day less at the hospital (2 instead of 3 days). But the worst part last time was stitches in mouth getting infected and the donut sitting cushon we are forced to sit on for 3 months post surgery.
Best of luck to you on your recovery. I really do hope you won’t see a relapse of your stricture.
Sig
Hello all,
Since I was diagnosed with a stricture back in March of this year(after a visit to the ER because I couldn’t void urine, no matter how many bladder spasms and warm baths crying to myself that I wished it would just let a dribble go for SOME sort of relief) and was told I’d be having a Urethroplasty, I’ve scoured this site and read every single post on here, a few times over. As well as my stricture, I had a malplaced Meatus (opening of the urethra at the tip of the penis), and Phimosis of the foreskin. My Surgeon, suggested we take care of those issues as well, to lower the chances of the stricture returning. I can only assume that my stricture was caused by skateboarding, It was something I used to do a lot! 360 flips down 5 sets of stairs had landed the skateboard upright underneath me more times than I care to count… Had I known this was a possible outcome of all that perineum damage, I’d have never picked up that skateboard in the first place. lol. A decade of slow flow, and embarrassment hopefully will be coming to an end shortly.
On October 17th, after 7 months of taking up to 20 minutes seated on the toilet to feel like I had drained the bladder to a point of comfort, I had the surgery, as well as a circumcision, and a Meatoplasty (where they moved the Meatus from slightly down the side of the penis to the tip) WOW! What a mess to look at when I woke up from surgery.
My recovery started out fine, I was in the hospital for 4 days afterwards, on my back so that the repair could seat itself well. I went home with a variety of painkillers (low dosage, they didn’t do much for the mouth pain) and antibiotics.
A week after going home, my scrotum swelled up to the size of a mini-pumpkin, suiting I suppose for the time of year. As well as the swelling, I had blood/goo discharge at the catheter site, this was worrisome, I emailed Ken(proprietor of this site) and inquired about the discharge, I hadn’t read anything from anyones stories, but while waiting for my Urologist to get back to me, I was racking my brain with worry. Ken suggested I reach out to my Urologist as this wasn’t something he encountered, and didn’t sound normal. The next morning, my urologist contacted me, and asked me to come in and take a peak. Upon getting there, he didn’t even have to see beyond the giant bulge in my pants, and knew something was wrong.
I was admitted for surgery immediately, and a hematoma that had grown a large abscess or infection was removed/drained. I was back at home the next afternoon with a new regiment of antibiotics, and some stronger painkillers as well as a daily Nurse to repack an open wound that was left on my scrotum to heal from the inside out, as the abscess left quite the void inside my scrotum…. Think half of a brick of butter, it was about that size.
I was supposed to have my catheter out today(Nov. 3rd), which coincidentally is also my birthday, this excited me a great deal, until my xray date was pushed back a week. Now Nov 10th is my hopeful catheter removal date.
I’m very glad that the whole recovery process, aside from the swelling and infection, was a relatively pain free ordeal. Like everyone says, the mouth is the most painful part for sure. My circumcision has been healing quite well, and the Meatoplasty, as odd as it looks having the urethral exit at the tip of the penis, will take some getting used to for sure. Lol. I’m very grateful for Ken for having this site out there, and all the contributors for sharing their story, it has brought great relief in many aspects of the recovery process. Here’s hoping to a leak free test on the 10th, and a catheter removal.
Good luck to everyone currently in recovery, or looking over this site for information for an upcoming surgery! It’s not as bad as you’d think. I haven’t had the opportunity to use my new urethra, but I’m hopeful it will be the best voiding I’ve had in a decade.
Trevor,
Thanks so much for sharing. What an ordeal! I can’t even imagine. Best of luck on the 10th! We’d love to hear how it went.
Cheers!
Ken
Well, I went in for my retrograde urethregram this morning. I was super nervous, the xray showed a small leak right where my abscess grew to… A catheter went back and in, and in 8 days I’ll go back and hope for better results. He said if the leak was there in a week, I’d have to get a suprapubic catheter to let it heal without the foley in. Here’s to hoping!
Uggh! thanks for the update, Trevor. Yes, here’s to hoping (holding up tea:)).
Best of luck!
Ken
HI, I just had my first stage of Distal Urethroplasty. I have my follow up appointment end of december where the urlogist will tell about second stage of urethroplasty. Can you please shed more light on second stage of urethroplasty?
anyone can shed some light how they went about living with first stage?Thanks.
also to add that i had bucal urethroplasty 3 years back.
Krish,
I can’t really shed any light on the 2-stage urethroplasty, since I didn’t have that one. I hope things go well. I know someone else here – Prash – is going through that. I Hope things turn out well!
Ken
Hi I am 41 year old based in UK,Since childhood i had weak flow.I had circumcision when i was 12 years old as all of sudden i had urinary blockage rthat it was fine till 2010 when i started getting pain.I had cystocopy and urethrotomy but that didnt fix it.i was told that i had stricture. so had urethroplasty in bulbar area in 2013.
2015 onwards i started getting urinary infections so again went for test(cystoscopy and dye test).They said there is stricture in front partso have to go for distal urethroplasty.
I just had my first stage of Distal Urethroplasty in October end .They have kept the surgical site open.have been told stricture is around 2 cm.i have follow up appointment in January.then they will decide for the second stage of urethroplasty which is basically closure of site.
has anyone had this two stage distal urethroplasty.would like to know how was the recovery and did it improve the flow after second stage surgery completion?
Thanks.
also wanted to add that after passing water i have to apply bit of pressure using hands to push out remaining water doc say this is milking as the graft is from cheek and is not that effective like the original skin so have to do that always.
has anyone experienced such things with the graft?
I have not heard of that, Prash.
Wow Prash. That’s pretty intense. I’m afraid I am of little help on this one since I didn’t have the 2-stage urethroplasty. I hope things turn out well!
Ken
Charlie here, I had my surgery Sept 2nd. End to End. 2 CM or so.
Things have been great! 2 months cath free, still some nerve damage in my foot but getting better.
Would do again, flow is amazing.
Glad to hear yours has been successful. Did they kept penis area open in first stage and closed in 2nd stage?
Don’t remember if I replied to this. But in case not – congrats!! I hope things are still good.
Ken
Had my three month post op follow up. Told me to come with full bladder, peed off the chart peak was over 40 ML/SEC. Scope looked good as well!
That’s awesome, Charlie! Feels great, doesn’t it?
Hi guys,
I’m a first time poster here— I’ve had a urethral stricture since roughly August of 2015… Initially the thought was it was my prostate either being infected or simply enlarged due to stress. So I went in for a CT Scan of October of 2015 to get a clear look at that area. Prior to that my PCP gave me a manual prostate exam in which she did note it was slightly enlarged. However, the CT Scan showed no such issues… So being the stubborn Irish/German lad that I cam, I carried on for months thinking that different prostate enlargement supplements could calm things down.
My stricture was so bad during December of 2015 that I almost had to go to the ER because I was barely peeing drops out of my hole… Ultimately, a sitz bath, and popping flomax and 3 ibuprofen saved the day… I’d never had an episode like that again thankfully, but in retrospect I was obviously peeing through the still early formation of my stricture (or maybe both that and one pissed off prostate).. Nonetheless, fast forward to July of 2016, after working a 4 month job and having to deal with using the bathroom far too much, and I had a cytoscopy that ultimately revealed I had a stricture. Those in the room pretty much immediately recommended I get urethraplasty done to take of care of it– it was sizable enough in terms of how small the hole was from the stricture, that they were unable to get the scope cam past it or dilate. So about a month and a half later, after weighing options, I went in for that retrograde urethragram X-Ray where they shoot dye up through your stricture and it revealed a significant stricture, however, my actual urologist dubbed it a very “minor” stricture in comparison to others that he’s seen. He said I could do the dialation procedure but it would be about a 40% chance of success because the area of my stricture (at the penial/bulbar junction) is very narrow to begin with. So urethraplasty was offered at about a 90% success rate and I signed up for it. My surgery is Feb 13th (one day before Valentines day no less)….
All that being said, I’m obviously scared $hitless right now. I was going to start a new job a month ago but the commute, coupled with my stricture symptoms was too much. So I decided to pack it in and lay low until I get the surgery done. I did not have to have a SPC installed because I am able to urinate enough to keep my body free and clear of infection… However, I typically sit down to urinate and I notice the more constipated I am, i.e. bowels irriated, the more that cuts off my stream due to the fact I have a stricture in the uretha and everything in that region sort of nudges close to one another (bladder, prostate, bowel, urethra)… When I’m very loose and relaxed down there I have some days where even though the stream certainly isn’t like it was before developing the stricture, I think, damn, I would probably avoid surgery altogether if it was at least that consistent day to day. I also notice stress plays a role in making things worse and I think that’s more my prostate becoming slightly enlarged and then boom, you pair that with the stricture in my urethra and I end up in the bathroom off and on a lot on most days.
I’ve tried every herbal supplement and even some stuff that’s supposed to naturally kill scar tissue within the body to try and avoid surgery… but to no avail, it always lands back on about the same frustrating level of consistency; or lack thereof….
My biggest fear is the urethraplasty messing me up more to where at least now I can sort of manage having the stricture (albeit manage the hell out of it on some days), and I don’t want to end up with a worse stricture post surgery/recovery, etc. I’m going through a young VA doctor who’s tied to a very respected hospital in my part of Upstate NY nonetheless. The plan is I’ll have a catheter inserted while I’m still knocked out during surgery into my penis and I’ll have a bag that the urine drips into for 3 weeks until going back in for that final X-Ray/healing site check.
I’ve never had surgery before where I’m knocked out so that’s obviously intimidating and just the fact having to have a catheter in me for 3 weeks seems even more daunting than the surgery itself lol Any pep talk or morale support would be appreciated, although I can’t complain too much because from the posts I’ve read on here there’s many other guys that have had this much worse than myself! The problem with my stricture is it really limits the hell out of what I can do in life and enjoy because I’ve avoided long road trips like the plague, sporting events and anything where I’d have to use a public restroom simply because those environments make me seize up even more. So I’ve typically stayed within a 15 mile radius of home and only run errands after I know I’ve used the bathroom enough prior to leaving. I think my urologist dubbed my situation best calling it a “quality of life stricture”… It’s still a nightmare but compared to some of the other stories I’ve read on here I still can’t complain.
Thanks for your help,
Phil
Hi Phil. Thanks for posting this. Your story sounds eerily similar to mine:). I spent months treating what my doctor thought was an enlarged prostate. And the morning I couldn’t pee at all, I ended up in a sitz bath as well, but to no avail. Went to the ER and – well if you read the post you know the rest. Nurses kept trying to shove a catheter up there despite my screaming and crying (at age 49 – a bit embarrassing but the pain….). Anyway, after that, they called urology and finally scoped me (with lidocaine gel finally!) and saw the stricture.
Anyway, I thing you’ll do great. You’ll actually find life (even though it’s only 3 weeks) with a catheter more freeing than than you think. You WILL be able to go to movies, sporting events, long drives, etc. because you’ll only need to drain your leg bag every 3 hours or so, which I think you’ll agree is better than now. You’ll also be surprised how fast 3 weeks will go. It’ll be out before you know it.
Don’t worry about the surgery. It’s easy to say, I know. But I’ve been through enough of them (too many) to fear them no more than going to the dentist.
Best of luck! I would love to hear back from you when it’s done.
Cheers!
Ken
Hi Phil. One more pep talk. Each of us on Ken’s site know that feeling of being scared prior to this surgery. Just remember that knowledge is power, and having read all of our stories empowers you to make the decision that will improve your quality of life. My surgery was 578 days ago (6/12/2015). Hey, I don’t actually keep count. I’m just a computer geek who has a running “count up counter” on my computer to remind me how long it’s been since I improved my quality of life. I only wish I would have done it sooner. I lived with my 2.5 cm stricture in the bulbar region for 49 years. Now it’s gone, and I smile every time I pee. This site provided a great support group for me during my recovery, and of course the knowledge I gained prior to the surgery was a huge gift. I still can’t thank Ken enough for this wonderful website. Best of luck, and I too would like to hear how you’re doing after surgery.
Best Wishes —- Ned
Ned – Thanks so much for that piggy-back post for Phil:). I’m still amazed and appreciated at the outpouring of support from people who have come to this site. I’m so glad that it has helped people! And for Phil – we’re here:). Ask anything you might want to ask. One of us might have gone through it and might be able to help. Again, best of luck!
Ken
You guys rock!!
Yeah, just today, I had a few decent days of not straining to pee and then bam, like clockwork, got a little stressed/upset stomach and it all has a synergy effect down there…. Thankfully “flomax” has saved my tail numerous times. I’m almost positive that in conjunction with my stricture that my prostate plays an active role on the days I seize up for a couple of hours– even w just a slightly enlarged prostate it makes my stricture that much worse…..
Regardless, really good to know the catheter can be my buddy versus my enemy. My situation is so inconsistent because I have a day or 2 where I can sneak into a movie, use the bathroom once but that’s typically if I popped a flomax the night prior. Bottom line, I have no quality of life right now. I was going to run to a store this afternoon and that all went to pot when I had my flare up and ultimately had to take a hot bath and pop a flowy.
Ned– 49 years?!?! That definitely gives me perspective as I’ve only had mine for a year and a half (which feels like an eternity to me)… Glad you finally get to live your life.
Ken– what is the best way to ensure that I don’t dislodge my catheter and in terms of emptying my bags, where would you typically do that if you’re in a public place? Or do you just make sure you time it so you get home within a 3 hour time period?
Thank again guys….
Pg
Phil,
The catheter is held in place in the bladder by a balloon (at least most are, like the Foley). So it won’t dislodge. I have a post about preventing you from ripping it out (horrific to think about) here: Tip To Avoid Tearing Out Your Foley Catheter. And as for emptying the leg bag – I wore mine at the bottom of my leg above the ankle (got the extension tube with the leg bag). So emptying the bag was really easy. Go into a stall, put your foot up on the seat, pull up your pant leg (I always wore drawstring pants so this was easy). Unhook the bottom bag strap hold the bag in your hand, point the valve into the toilet and open the valve. Let it drain and then, close the valve, restrap the bottom strap around your leg and go about your business. I hope that helps.
Thanks, Ken… today was a hell of a flare up day for me. I was probably about 30 mins from having to get to the ER and get one of those super pubic tube catheters… Luckily, flomax saved my bacon once again…. I know why I had the flare up I did– was stressing big time this morning and that send a domino effect right down to the lower extremity region.
I had no idea there’s a balloon that holds the catheter in place in the bladder- good info. I will def be asking whoever is coaching me on the catheter in general on what not to do and what to avoid in general for activity 2 ensure I don’t inadvertently rip it out.
One question, would it be possible to take a bath with the catheter in, with the urine bag attached to my leg? I was thinking a daily bath may aid in easing the overall pain from the swelling down in the groin region? Hopefully I can at least shower with it on nonetheless.
Thanks again for all your help! Oh, and I forgot to mention my age– I’m 36, so still relatively young– just another reason why I wanted to get this done now versus waiting. After today’s brief flare up I’m beyond grateful surgery is just around the corner.
Philip,
Sorry I missed this. About the bath – I don’t know if that would be the best idea with a catheter. A shower is great – the bag would be below your waist if you wore one – I always wore a bedside bag after I got a UTI the first time I just let the open tube dangle, which is what I was told I could do. Now I must say that there is NO clinical evidence for what I’m saying on having the bag attached or not in the shower. As you are already colonized, it shouldn’t matter. But I was just hedging my bets on this one. It was super easy just to leave the bedside bag attached while in the shower. But in a bath, you wouldn’t be able to keep the bag below your waist, so the risk of the urine backwashing up the tube, which is not good. What you could do – though I would definitely clear this with your doctor first, is to get a plug for your tube. Then you might be able to take a bath with the plug in. The potential problem there is that the urine would collect in your bladder during the bath and your doctor may not want that. Sometimes the docs want bladder rest before surgery.
I hope that all helps.
Ken
Yes Phil, 49 years. I was actually diagnosed as having a stricture in 1966, when I was 15. After years of dilations, things got so bad that I had 6 urethrotomies between 1978 to 2008. I went for my 7th urethrotomy in the spring of 2015. That urologist, Dr Lawatsch, had done my previous urethrotomy in 2008. He looked at his notes, and said to me, “No, I will not do a 7th urethrotomy. It’s too dangerous, and it is time for you to get a permanent fix.”
It was only because I had moved to where I am living now that I had switched urologists in 2008. Had I still lived in my previous city, the “ole doc” there would have performed another urethrotomy. It was all that he knew. However Dr Lawatsch is much younger, and although he was not trained in urethroplasty, he knew it was the only solution for me and he referred me. He tried to talk me into urethroplasty in 2008, but I insisted on a urethrotomy. Of course, when a stricture is more than a small fraction of a cm long, urethrotomies do not work. Each of my urethrotomies lasted about 3 months, and then I suffered for 6 to 7 years before I would schedule another one.
Long story short, I was 64 before I had urethroplasty in 2015. I won’t sugar coat it. The first couple of weeks of recovery are not fun. But then things start getting better and as I indicated above, I only wish I would have done it sooner (like when I was 36). It helped me a ton to know I wasn’t alone during the recovery, and that’s the beauty of Ken’s dedication to this site, as well as others who have gone through this and share their experiences. As of today’s date, I am at exactly one year and 7 months post op and doing terrific “down there” in every way.
You’re doing the right thing. Keep us posted, and again best of luck — Ned
Thanks for that, Ned!
Ken
Thinking of you, Philip. Best of luck with your surgery tomorrow, 2/13. May the stricture disappear and be gone FOREVER!
Ned
Ned,
Thanks a million for your personal take what you went through… My urologist (post urethragram) gave me the two options– he said technically we could dialate, but given how narrow that part of your urethra already is I give you barely a coin flip for success. He gave me about 90% for urethraplasty. I signed up for the latter immediately. I am definitely scared $hitless but that’s to be expected. I served two tours of duty in Iraq so I’m going to look at this similarly and expect to go to a bit of hell and back b4 things calm down.
But here I was thinking I could feel sorry for myself and in your case you’ve had this since you were 15!!! That’s astonishing. I feel like the last year and a half has felt like 3 years in terms of not being able to remember what it was like to go places and not stress about when I need to use the restroom.
Thanks for the support…. This is such an unspoken condition that it’s blind luck I even came across this forum! (Thanks Ken!!)
You’re welcome, Philip!
Ken
One last question for now (for Ned and Ken)…. Not to get too personal, but how soon after surgery were you guys cleared hot to go back to having regular “relations” with the wife or girlfriend? And with that, did things pretty much return to normal down there as far as performance? (So scared I’ll lose the desire)
Additionally, I’m a big runner. I’d imagine I’m going to gain 10 pounds just sitting on my butt for 3 weeks w catheter in me, but any idea how long until you’re cleared to just do standard cardio, i.e. walking/ or running?
Thanks again!
Philip – for walking, you’re pretty much OK to do that 3-4 days after surgery, though each case is gonna be different, so check with your docs if you have any questions on this. I didn’t do any jogging until I had my catheter out 10 days or so after the surgery. After that time, take it slow. If the bouncing/hard foot-falls of jogging don’t bother you, it’s probably fine. For me, there were still a lot of things swollen down there. I think it was about month before actual jogging took place. For the relations thing – there should be no problem with your desire/drive. Depending on your surgery (graft or no, etc.), it may take a few weeks or even months before you can get to full strength erections. But beyond that, I think it’s probably best to wait 4-6 weeks after surgery. that was the advice I got and it was pretty right on.
I hope that helps.
Ken
Hi Philip – My surgery started at 8am, and they told me around 5pm that I would be released the next afternoon if I could walk the halls. I was up early the next morning, and made sure to show them I could walk the halls. I am no longer a runner, but I am big on using my elliptical machine for 30 minutes everyday. My surgeon asked me not to use the machine until after the catheter was out. Actually, I had no desire to use the machine until after the catheter was out, and I waited another month beyond that. For me, catheter removal was on day 17 because the RUG test, which you will likely have, showed that the repair site had a slight leak and needed to heal longer. Again, everyone is different. As the doctor told me, he has seen large leaks heal quickly, small leaks take a month, and there’s others who heal in 10 days with no leak at all. The moral of the story is be patient with yourself. You will heal, and you will know when it’s time to get back to full activity.
This may surprise you, but I actually lost weight post surgery. I had no appetite the first two weeks. I think a big part of that was because I was so worried about experiencing the first bowel movement. For me, that occured on day 7, which is not that unusual. Regarding weight, I was 20 lbs overweight before the surgery, and lost all 20 lbs by 1 month post surgery. At 1 year and 7 months post op, I have kept it off.
Regarding the relations thing, I agree with what Ken said. You don’t lose desire or drive, but the surgery does cut through a lot of nerves “down there.” Those nerves take time to heal, so expect that some of your initial performance will be getting over the mental hurdle of expecting pain. Here too, patience is your friend.
Hope that helps —- Ned
You guys rock— Ned/Ken… Great info all around. I was worried you guys were going to say I couldn’t go running for 3-6 months after surgery and catheter removal was done…. so phew!!
As far as healing so performance comes back for “relations”, that definitely makes a lot of sense… stuff just needs time to fully heal before things return to normal.
Gosh I am scared lol But this certainly helps keep my mind at bay getting to bounce thoughts off of you guys… I really appreciate it!!
Hi Ken,
It has been a while since last time. Things are good so far. I still sometimes feel like a few drops stay inside the urethra after I pee. Also when I pee I feel sometimes like it burns slightly inside.
1/ Did you experience that? Is it because we had the surgery there so the site still a bit sensitive?
2/ Also after ejaculations I feel a bit of pain in my urethra and it extends to my rectum. I took an appointment with my Professor about it. You know when you experience these things you become hypochondriac. I heard it may be prostate. Also, it may be related to piles. What do you think?
Hi Salim. One thing I realized more clearly BECAUSE I had the catheter for so long was how the bladder is constantly pushing out. Sometimes when I was changing bags, I’d hold the detached tube and see how the bladder would shove a little pee out, then a little more – if I didn’t get the bags changed quickly enough:). That made me understand that a little pee in the urethra after peeing is totally natural. I wouldn’t worry about that at all. I do sometimes – rarely though – get pain like you describe. I think it may be because of the surgery. I’m not sure. I’d be interested to hear what your doctor has to say about that. And I don’t know anything about piles…..yet:-P. As often as I seem to get relatively rare medical stuff, I wouldn’t be surprised.
Salim/Ken,
I can safely say WITH my stricture I not only do get some leftover pee inside the urethra (that doesn’t fully escape past the stricture initially and sort of stays in there, and, with ejaculations, I’d say in most cases they’re painful– sometimes the soreness extends to my rectum, other times it doesn’t.
My question to Ken would be, did you experience this as well when you still had your stricture? I’m also trying not to be a hypochondriac b4 surgery lol
Philip
I did have some of that pain with the stricture before surgery, yes. But not after. Hope that helps.
Ken
Hey guys,
I can safely say WITH my stricture I not only do get some leftover pee inside the urethra (that doesn’t fully escape past the stricture initially and sort of stays in there, and, with ejaculations, I’d say in most cases they’re painful– sometimes the soreness extends to my rectum, other times it doesn’t.
My question to Ken would be, did you experience this as well when you still had your stricture? I’m also trying not to be a hypochondriac b4 surgery lol
Philip
Thanks Ken for your answer. My appointment will be on the 21 February. I’ll let you know what he’ll say. Have a pleasant day.
Urethraplasty followed by Bladder Cancer
Hi Ken!
I had my end to end urethraplasty two years ago next month. Did a lot of rehab through a Pelvic Floor physical therapist in Cincinnati. It help immensely. I have been doing well.
Last week I found out that I now have prostate cancer. The urologists are not real keen on any kind of surgery to remove the prostate as they take the prostate and a segment of the urethra from upstream of the stricture repair. They informed me that the blood floor is reduced and I would probably have healing problems leading to strictures, incontenance, and bladder neck issues.
I would bet money I am not the only male that has had urethra reconstruction followed by bladder cancer since the incidence of bladder cancer is around 1 in 6.
Ken have you or anyone heard anything or had experience with this? Talking to a radiologist this next week and two other surgeon.
Thanks guys!
Dennis
Dennis – is it bladder cancer or prostate cancer or both?! Dang, that sucks hard! I don’t know of any likelihood for urethra patients to develop cancer. But it’s worth researching. Please keep us informed of your progress.
Best of luck!
Ken
Ken, Sorry it is Prostate Cancer it seems. My typo. Just had the bone scan , so will find out next Tuesday if it has spread.
DennisT
Ah, OK. Thanks Dennis. Well I suppose that’s better than two cancers:-P.
Ken
Sorry to jump in but is there something out there that states having urethraplasty can cause prostate cancer?
I’m due to have surgery in about 15 days so please, fill me in guys, that would be terrifying to deal with the brunt of recovery from urethraplasty only to develop prostate cancer. I also apologize if I misunderstood the last exchange.
Ken, before you had the surgery, with the stricture, were ejaculations ever painful after the fact?, i.e. you felt sore in general down in your rectum/groin region?
Sorry for the 20 questions
Philip,
There is nothing out there that I’m aware of linking urethroplasty to prostate cancer. Don’t let that be a source of stress for you. You’ve got enough to feel nervous about:-P. “Sufficient unto the day….” as they say.
And I did occasionally get a pain like you mention in the rectum/groin area. But I haven’t since the surgery.
Hope that helps.
Ken
Ken,
That does help, thanks! I’d also recommend (as far as prostate health goes) to take one of several really good natural prostate health supplements. I’ll be popping those like candy once I’m free and clear from the urethra repair to try and keep everything down there ship shape.
Like Ken says I do not think the two are related. Although some treatments for prostate cancer can cause strictures. I think I have just had a run of bad luck. My younger brother and cousin both had prostate cancer. It just happens they found my cancer just short of 2 years after my end to end urethraplasty. Since 1 in 6 men usually get prostate cancer I just thought I would see if anyone that had the urethra repair had prostate cancer after and if so how was it treated.
Sorry to add more stress to anyone’s life. I know how that is.
DennisT
No worries man– no need to apologize– I over-stress everything so that’s my problema… I just wanted to get clarification if you had been told by doc’s that it was a real connection to having a urethra repair.
Did you at least get some good news as far as it hopefully not spreading past your prostate? I’ve heard that it can take a long time for it to spread past that region so hoping the same for you!
Pg
Hi Ken,
Thanks so much for your website. I just got thru my 3 weeks of recovery and had my VCUG today. Everything looked good and they sent me home tube-free, which was a relief, but I had a little when when I urinated, just at the end though, and when I looked at my x-ray there was a knob of skin hanging down from the top of my urethra where the stricture was repaired. The doctor said this was nothing to worry about, but still I couldn’t help but feel a little disappointed thinking it was going to be completely obstruction free. Has anyone else had a VCUG that looked different from what you hoped, and did it matter? I’m just asking the whole group since I know you had end-to-end whereas this seems to be a buccal graft concern only.
Thanks!
Hi Peter. thanks for the comment. And congrats on a successful urethroplasty!
I’m glad you find the site useful. to be honest, I never looked at my image post surgery. The surgeon performed the test and watched the screen and pronounced everything great. After that, the only metrics I paid attention to were my lack of urinary retention and my nice strong stream (along with the flowmetry numbers too).
I hope that helps!
Ken
Dear Peter, you mentioned you had a “little” at the end when you urinated– a little what if you don’t mind me asking? I’m having my surgery in 11 days and scared stiff lol
Was your stream at least noticeably and consistently better than prior surgery?
Thanks!
Pg
Hello Ken, et al,
My name is James and I live in a small town about an hour outside of San Angelo, Texas. I’ve been reading the postings on this site for quite sometime. I can’t even begin to tell you how much of a help the site has been. At each stage of my journey I have scoured the site for information to get me through the next phase. I certainly hope you continue to gather information and stories into the future to keep the site fresh and current. There will be many more of us in the years to come and I hope those guys have the benefit of all this experience. I want to do my part, so I decided to tell my story as well.
I too have dealt with urethral strictures for quite some time. My first memory of a slow stream was in 1985 or thereabouts. I just dealt with it for many years because of a lack of information. Finally in 2007 I had a cystoscope in Dallas, Texas. The urologist at the time just continued to perform dialations for 5 months and then ultimately performed a urethrotomy and cut out the scar tissue. I was fortunate that the latter worked (I use the term “worked” loosely) for about 8 years and then, of course, the stricture slowly returned, but with a vengeance.
In September 2016, I woke up one morning to find a significant amount of blood in my urine. I set up an appointment with a urologist in San Antonio. I informed him of the strictures, but he performed a cystoscope and pushed through the stricture anyway. On the way out, he trimmed away the stricture and said to hope for the best. It was at that moment that I realized just how bad the slow stream had been. For the first time in a decade I was able to urinate normally. This lasted about 3 weeks, and then the stricture almost sealed off the urethra. I knew I was in for a hard time when I would stand at the toilet for 4 to 5 minutes each time I had to urinate. I returned to the urologist who ordered a Supra public catheter, which was placed on December 20, 2016. The problem was that the SPC that was placed ended up being a rigid trauma tube (12 or 14 fr.). For weeks the catheter stabbed the side of my bladder causing terrible pain. Each day the drain tube and bag were filled with tissue and blood. This type of tube is for someone who is bedfast, NOT for a patient who is moving around. I called the interventional radiologist who placed the SPC and he had no advice, just “go to the ER, there is nothing I can do for you.” I was so frustrated that neither the radiologist nor the urologist would return my calls for 5 or 6 days. Actually, I never heard back from the urologist at all, just nurses who offered no advice other than to go to an ER if I was having problems.
Finally on December 29th, after tons of research on the internet, I found a urologist in California who specialized in urethral strictures. I sent him an email explaining my circumstances and asking for advice on what I should do next. Within two hours (5;15 a.m.!) my phone rang and it was Dr. Joel Gelman at the Center for Reconstructive Urology. He spent an hour with me on the phone and by the end of the call, I knew I had found my new urologist.
On January 6th, I flew out to Irvine, CA. Dr. Gelman completed all the imaging, urine cultures, paperwork, etc. and then set up my surgery for January 26, 2017 at UC Irvine Medical Center. I arrived at 6 a.m., and within just a few minutes, I was on the table and being whisked away to surgery.
Dr. Gelman performed an end to end urethroplasty, removing a 3cm stricture that was located approximately 4 cm from the bladder neck. The surgery took a little over 4 hours. He also removed the rigid suprapubic catheter and replaced it with the flexible silicone type SPC. What a difference that made! The first 2 days were no picnic. My pain threshold is fairly low, so I would estimate the pain scale to be around a 5 or 6. The nurses kept me on Norco pain pills, which were a welcome relief. But by day 3, the pain had dropped to a 1 or 2, and was completely tolerable. The urethral tube is irritating, but manageable. As long as I keep a dab of bacitracin ointment on the tube itself, it slides easier and is painless. I’ve also learned to cut a V in the front of several of my briefs so that the elastic waistband doesn’t rub on the on the suprapubic tube.
I stayed in the hospital until Sunday, January 29th. I had enough hotel points to stay in a Marriott Residence Inn in Tustin, CA, until my follow up visit on February 3rd. Luckily, I have family in Phoenix, which is now my recovery location until tube removal. Today is February 6, and I am scheduled to return to Dr. Gelman’s office on February 17 to have another round of imaging and the tubes removed.
The recovery has been slow (at least to me it is, time is dragging), but each day I get better and better. Like Ken had posted at one point, the worst pain for me is testicular pain. With mine, there is hardening on each side of the scrotum, below each testicle, that just constantly ache. It is getting better each day, and the doctor said its nothing to worry about.
This has been quite the journey, with several more steps to go. I’m sure I’ve left out a ton of useful information, but I’m always available to answer any questions about my experience.
Wow James. Thanks so much for posting that! Ironically, I was within a few miles of you at several points during your surgery and initial recovery, having been in Irvine and environs a few times in January and staying overnight in Phoenix on the way back home:).
I’m so glad you finally got the right doctor! That makes such a difference, doesn’t it. Thanks for posting his name here. It might help others. Your story also highlights the need to take charge of your own pain and medical situation, not just listening to those who say there isn’t anything they can do and that you need to put up with intolerable pain. Good for you for doing what you did and sharing it.
Best of luck going forward, I think you’ve been through the worst. I’d love to hear back periodically as you recover!
Cheers,
Ken
Hi Ken (and others) –
Thank you for this immensely helpful site. It has been a comfort among all the uncertainty. 26 years old, I’ve been dealing with stricture related symptoms for three or four years. I had an end-to-end urtheroplasty performed for a 2cm stricture about 8 weeks ago in Chicago. My surgeon is a skilled urologist with a specialty in urethral reconstruction. The recovery was tough but manageable.
A few weeks after the catheter was removed, I began to developed a weak stream…Familiar symptoms started to arise again: a split stream, not fully emptying my bladder, urgency, etc. I went to see my urologist last week. We looked at the urethra with a cystoscope and found a build up of scar tissue near the site of the surgery. I am angry, disapointed, and hopeless. Everything I was told and read gave me hope for a full recovery, with the success rate being so high. I don’t know why this has happened and my urologist gives me the easy answer that “there is no way to know why this has occurred.” It is difficult to remain positive when I don’t know where I went wrong.
He recommended that I have another procedure performed: a direct vision internal urethrotomy (DVIU). This is where they go in with a cystoscope that has a blade attached to the end. He will cut away the scar tissue and coat the area with steroids. He tells me there is a 50% chance a stricture will resurface. Everything I read about the DVIU and other related dilations give it a poor long term success rate.
Do you have any insight to offer? Is this considered a failed urthroplasty? Am I simply putting myself at continued risk of stricture recurrence by undergoing procedure after procedure? How can I demand of my urologist a more clear idea of WHY this is happening?
David,
I’m sorry to hear that! With the success rate being what it is, you must be one of the unlucky minority. As to why, I can obviously only guess. I would say that it could be either that your body puts down scar tissue more aggressively than most people, or that something happened during surgery to increase the odds of scarring. Is it certain that this new stricture is at the same site as the one that was repaired? Is it possible there was another stricture?
Keep your fingers crossed. Maybe the fact that you were one of the unlucky few with the urethroplasty will mean that you’re one of the lucky 50% with the DVIU. Maybe the fact that the site of the stricture is where the repair happened, will mean a more regular pattern of scarring, which could in turn mean a more likely success? Just guessing about that again.
Best of luck!
Ken
Hi David,
So sorry to hear of your experience. However, to provide you some hope, please know that early in my recovery I experienced split stream and also total retention (that is, I could not pee at all). I actually experienced 3 episodes of complete retention, each approximately 30 days from the previous episode. I was really worried just like you. And I remember feeling hopeless as you mention.
I am very surprised that your urologist would want to perform a DVIU urethrotomy just 8 weeks after end to end urethroplasty. My surgeon told me that was an option, but it wasn’t on the top of his list. Looking back at it now, my post op experience for my “end to end” repair site at 8 weeks, and for me even at 12 weeks, had not really “settled down.” If you have ever broken an arm or leg, you’ve experienced the swelling during healing. I’m convinced my urethra repair site also swelled from time to time (you know, we sit, we walk, and blood flows and settles). Of course the retention episodes played tricks with my mind, and then things became worse for me. Dennis T (also on this site) had a similar experince. Dennis found a PT specialist, and reported some success with his pelvic floor exercises. I used Dennis’ PT exercises (they are described above, November 2, 2015 at 2:04 am post), and they helped me. Further, my urolgist trained me to self cath, and I did that once every two or three weeks. That really got the stream flowing well again. Approximately 10 months after my end to end urethroplasty, I have never had to self cath again, but it took that long for me. I have a running day counter on my computer which tells me that as of today’s date, it’s been 296 days since my last self cath. In 4 more months it will be exactly 2 years since my end to end urethroplasty surgery, and I can tell you that I am 100% confident that I will not need to self cath ever again. My stream is strong, and I will report new official results on 6/14/17 which will be my 2 year check up with my surgeon in Milwaukee, WI.
So David, keep the hope alive. I can say I know (Everyone on this site truly understands) this is really difficult. But we also give you the hope that there is a chance that healing time might be all that you need. I had set backs during my healing time, and I think everyone who has experienced any surgery will tell you there are some steps backwards before the full healing takes you completely forward to normalcy. My surgeon and I talked about that same DVIU procedure and coating with steroids. Continue to seek professional advise, but know that here is a guy who elected not to have the DVIU so soon after urethroplasty for what might be an area that just needs more healing time. I opted to believe the surgery might be successful if I give it more time to heal. I was lucky; it worked for me. You lived with the stricture for 4 years, so 1 full year of healing time is not so large in the grand scheme of things. I wish you the best and full healing.
Ned
Thanks for that Ned!!
Ken
David
I would seek another opinion. I have consulted with Dr Richard Bihrle at IU Health in Indianapolis. He is also a urethraplasty specialist and know around the world. He may have some insight. The Pelvic Floor exercises helped me over time. so does reducing stress and anxiety. Stress and anxiety tightens your pelvic floor and it is hard to pee.
By the way 2 years after my end to end urethraplasty I was diagnosed with moderate prostate cancer. The two are not related. However with the stricture repair ai am at a higher risk for more strictures in the future when we treat the cancer with surgery or radiation. I found out that during the end to end the bulbar vein or vessel was not spares which may cause lack of blood supply after the removal of the prostate and scar tissue. So I suggest since 1 out of 7 men will get prostate surgery, is to see if your surgeon can save the bulbar vein or vessel during end to end urethraplasties.
Ned –
Thank you so much for your response and insight.
I pulled those PT exercises from the previous post and will start implementing them into my daily routine. I hope this will give me some relief. You have given me a bit of hope that I am simply still healing. I am concerned about my doctor pushing for another procedure. I am also struggling finding any empathy in my doctor, after what seems like a failed surgery. It seems the easy answer for him is to keep prodding me with procedures. He has not mentioned anything about self cath or pelvic PT exercises.
Why did you and your doctor opt not to do the DVIU? What went into making the decision? Was your retention due to more scar tissue or a problem with the bladder? When we used the scope, I saw the scar tissue and the reduced hole where urine will have to come through. He did not mention the size of the stricture and only mentioned that it appears to be in the same place as the previous stricture.
While I do have more hope, my patience is being tested. I’m concerned the longer I wait to tackle this build up, the worse it will come. Do we know if that is the case? That scar tissue left untreated will continue to grow?
Thank you again for your words.
Hi David,
The main reason for opting NOT to dive right into a DVIU was because of the confidence I had in my surgeon, and the confidence he has in his own abilities. I live 2 hours north of Milwaukee in Appleton, WI. Although we have large clinics and very qualified urologists here, all of the Appleton and Green Bay urologists say only Dr R Corey O’Connor or Dr Michael Guralnick of Froedtert Medical College in Milwaukee are the two surgeons to consider in the upper Midwest. I was actually surprised to hear that you found someone in the Chicago area that performs urethroplasty. During my initial visit to Froedtert to consider the procedure, I met a couple of other men from Michigan and Illinois who were there for the same reason I was. Their local urologists had told them the same thing that my Appleton urologist had told me. That is, there is no one else in the upper Midwest except these two guys. Dr Guralnick trained under Dr Webster on the east coast (Duke University) who is considered the pioneer of modern urethroplasty, and O’Connor trained under Dr Stone at Cal Davis, who had also trained under Dr Webster. There really aren’t alot of surgeons who perform this procedure as their specialty.
I viewed the online videos of both, and chose Dr O’Connor. I went for a one hour consult in April. He was just so very reassuring and confident. In my first meeting with him, I asked what he would do if after the surgery I was developing a new stricture. That is when he told me that IF there was any new scarring, it would be very minimal and he could perform a small cut and coat it with steroids, but that was on the bottom of his list. He was confident that this would not happen. Of course, once I started experiencing the retention episodes after the surgery, I was convinced I was one of those people who scar easily and I initially feared that I was developing new scar tissue. During the retention episodes, I was driving to my local ER in Appleton, WI.
The main reason for opting NOT to dive right into a DVIU was because of the confidence I had in my surgeon, and the confidence he has in his own abilities. I live 2 hours north of Milwaukee in Appleton, WI. Although we have large clinics and very qualified urologists here, all of the Appleton and Green Bay urologists say only Dr R Corey O’Connor or Dr Michael Guralnick of Froedtert Medical College in Milwaukee are the two surgeons to consider in the upper Midwest. I was actually surprised to hear that you found someone in the Chicago area that performs urethroplasty. During my initial visit to Froedtert to consider the procedure, I met a couple of other men from Michigan and Illinois who were there for the same reason I was. Their local urologists had told them these two individuals were the best in the business. Dr Guralnick trained under Dr Webster who is considered the pioneer of modern urethroplasty, and O’Connor trained under Dr Stone, who had also trained under Dr Webster. There really aren’t alot of surgeons who perform this procedure on a regular basis.
Once I started experiencing the retention episodes after the surgery, I was convinced I was one of those people who scar easily and I initially feared that I was developing new scar tissue. During the retention episodes, I was driving to my local ER. Dr O’Connor (over the phone visit) believed my issue was related either to the prostate acting up (because of my age – 65), the bladder not pushing hard enough, or a combination of the two. First he treated me with drugs to relax the prostate. Initially that seemed to help, but the retention still showed up like clockwork. It seemed to hit near day 30, and of course always on a weekend where I had to go to the ER. Now I had ER physicians convincing me that I must be developing new scar tissue on the repair site. Four months after the surgery, and with me having experienced a 3rd episode of complete retention on Oct 11th, Dr O’Connor decided to do two things: (1) Put me through a urodynamics test and (2) Do a cystoscope to view the repair site. During this test they continually fill your bladder through a very small catheter inserted through the penis, and then have you void while the very small catheter remains inside. It’s a very weird feeling. The urodynamics test measures the dynamics of all the body parts that allow us to pee. Because I had lived with my stricture for such a long time (49 years), Dr O’Connor explained that having a distended bladder (one that gets too full too often during the years, or works too hard to push out the pee) weakens the muscle walls of the bladder, and thus you have less pressure and it can be difficult to pee. The urodynamic test showed that most of the time, my bladder was able to develop enough pressure to pee normally, but sometimes during the 45 minute test, the pressure would drop to the point where retention could (and actually did near the end of the test) take place. During the second test (the cystoscope), I got to view the inside of my urethra “live” on a large 42 inch screen. That test showed a perfectly opened urethra at the repair site with NO stricture and NO scar tissue. He scoped all the way into the bladder, and stated that there were NO strictures anywhere. By the way, I had one visit with him between the initial consult and the actual surgery for a scope. My stricture was so long (2.5 cm) and so tight that the scope would not pass through it. It sounds like you got to see the same thing except AFTER your surgery, and if that is the case, that is not good. However, it also sounds like you were given no length of the scar area, which is normally measured through fluoroscopy RUG.
So, Dr O’Connor was convinced that my issue was part prostate, part weakened bladder muscles, and also part psychological. That was when he said I have two options: (1) Go on as I had been, and if I experienced another retention episode I should head to the nearest clinic (or ER if after hours), or
(2) Come back in one week and learn how to self catheterize so that I could take care of any new retention episodes by myself.
I chose option #2, because every time I had a retention episode, my bladder was distended (stretched) and therefore the protocol is that a foley must remain in for at least 10 days to minimize damage to the bladder wall and the muscle. Self catheterization is with an intermittent catheter and not a foley catheter, meaning it goes in, and comes right back out and of course you do this BEFORE you are so full that you are in pain (distended). I will be the first to admit that I was scared to even try this procedure, but I believed that if I knew I could “self cath,” perhaps I would never have another retention episode.
On 10/28 I was taught by my surgeon’s nurse how to self cath. She has the perfect demeanor and personality to be teaching this procedure. She is very professional, knowledgeable, and put me at ease. It certainly helped when she told me that she has been teaching the nurses at the medical college how to do this procedure for 16 years. Further, she said self catheterization is more common that any of us would ever believe (she teaches at least a patient per day). The process is no where near what I had imagined and feared. It’s actually a lot less painful when done by yourself than when done by any professional, and it’s easy.
Of course, you must self cath BEFORE retention sets in. So, I self cathed at home on 11/25/15 which was 27 days. I felt my stream was slowing, but it was NOT stopping.
I self cathed on 1/30/16 when I felt my stream was slowing again, which was 66 days. I had broken the 30 day barrier.
The 3rd time was on 3/31/16, 61 days.
The 4th time was 4/17/16, just 17 days but I felt like my stream was slowing. Looking back at it, I now know it wasn’t. The issue was that it was early morning, and I had slept through the night without emptying (keep reading, explained below).
I had my 1 year check up on June 8th 2016 (the end to end surgery was 6/12/15). During that check up I asked my surgeon why my stream seemed slowest in the morning, but then normal in the afternoon. He asked if this happened when I slept through the night without getting up. He told me that because I was sleeping through the night (typically 6 to 7 hours), my bladder was likely holding 1,000 ml. He explained that the fuller a bladder gets, the LESS pressure it is able to exert (just the opposite of what you would think).
I performed an experiment to prove this to myself. I set an alarm to get up to pee every 3 hours. Sure enough, no more slow stream, and I have not self cathed since 4/17/16. That’s 298 days, almost 10 months. And no retention at all.
All the extra healing has allowed me to now sleep 7 hours, and still have a good stream when I wake up. Occasionally my stream will be a little weak in the morning after sleeping 7 hours, but after almost 10 months of doing well, I have no more fear of stopping completely.
I had also read about Dr Gelman, having found his website during searches while I was so scared with the post op retention episodes. I played all the videos of past patients on his site who described their experience with him. He sounds like a very accomplished surgeon in this field, but as you said he is so far away. I never considered contacting him, but obviously that is because Dr O’Connor is so very reassuring and exudes confidence. If your surgeon isn’t providing the kind of follow up or treatment suggestions you expect, perhaps Froedtert is covered by your health insurance and you may want to consider a consult.
Dr O’Connor Video –> https://www.youtube.com/watch?v=ayu6o8H1E_M
Dr Guralnick Video –> https://www.youtube.com/watch?v=cTzNtDJkUQU
Sorry for the length, but hope this helps — Best Wishes!! Ned
Thanks Ned!
Ken
Hi David,
I’m sorry you are going through this. I’m sometimes not sure what is worse, the physical trauma that strictures cause, or the mental anguish.
I urge you to take a look at the website for the Center for Reconstructive Urology. Dr. Gelman is a specialist in “Re-do” surgeries. Men from all over the country travel to his center. He has performed over a thousand urethroplasty surgeries and many many re-do’s. Hopefully your issues resolve organically, but if they don’t, you might want to consider Dr. Gelman as an option.
Again, I hope you heal and feel better soon,
My best,
James
Thanks for that comment James!!
Ken
Thank you James!
What a coincidence. I just spoke to Dr. Gelman on the phone last night. He is a incredibly helpful resource and treated me with more care and understanding than my current urologist. He continuously criticized and questioned doctors who claim that they specialize in urethral reconstruction while also pursing all other areas of urology. He has an incredibly high success rate (he told me ZERO recurrences were reported 4 months after his surgeries in the last 18 years.) He is definitely on my radar now. Of course, travel and expense are a huge factor.
Thanks for your words.
After hearing David’s story I gotta admit I’m definitely more concerned about my chances for Monday’s surgery. I’m almost getting the vibe it’s much better to have end to end urethraplasty versus just augmenting a smaller stricture. I’ll be getting a relatively short stricture taken care of with urethraplasty and after reading David’s account, it makes me think the same site of the original stricture is perhaps what can just reform and close up after the catheter comes out?
Man. I wonder if it was a case of maybe getting the catheter pulled too soon? Maybe that was pulled sooner than what was needed for the area to heal up (with catheter in) and preventing anything from amassing in that region?
Regardless, at this rate, I either try or I’ll never be normal again at this rate. I’m still disheartened to hear David’s tale and I hope he finds some success with the alternative they’re proposing… but the problem with that method is it literally just re-scars the same spot and of course the body is going to eventually re-heal with more scar tissue.
Dang it. Total bummer. Has anyone here had successful urethraplasty where it was just taking care of specific stricture and wasn’t “end to end”??
Philip
Last theory b4 my judgment day— Ken, or anyone who’s had successful surgery, did the urologist tell you what you were allowed to drink (with catheter in for 3 weeks) post surgery? I’m going to ask mine but cranberry juice is something I’d like to drink to fully prevent bladder or UTI, but more importantly, Wally World sells this “Pure Aloe Vera” juice. I’m wondering if by maybe chugging a ton of the Aloe Vera juice for those 3 weeks and onward (post catheter removal), if that can increase the likelihood the site of surgery heals “smoothly” versus getting out of control to where new scar tissue could form? I figure that’s worth a shot anyway… Anything to soothe such a region of trauma b4 it has a prayer of regrowing into something worse.
Let me know what you guys think!
Thanks again,
Pg
Philip,
One of the primary reasons why the end-to-end almost never gets scarred over to form another stricture is the way the cuts are made in the ends that are sewn back together. They don’t just bring together something that looks like two straws – 2 circles. Here’s a pic that shows basically what they do:
So scarring into the urethra SHOULD not result in another stricture. apparently 5-10 percent of people still have trouble though. There are a lot of variation in the human body from person to person.
Hope that helps.
Ken
Thanks Ken… Gosh, I hope I’m not in that 5-10 %…. I gotta stop thinking about it or I’ll wig myself out. In terms of preventing infection, apparently I’ll be put on antibiotics b4 and after surgery for weeks so that I don’t develop anything down there (which I like/pro-active approach!!)….
Philip,
I was not given any guidance about drinking. That is probably because nothing you drink will do a darned thing for you until the catheter is out. When you are catheterized, you are colonized by bacteria. They are already there. Nothing you can do. The only question is whether they invade your tissues and you develop the infection. There are things you can do – keep the flow of urine going in the right direction, keep hydrated, and keep healthy. There is no evidence that cranberry or any juice will have any effect. Interestingly, even when there is no catheter, the evidence for cranberry products preventing UTIs in men is scant-to-non-existence. Evidence is there for women. There is a theory that this is merely a matter of there not being enough data points for men because they don’t get UTIs as often as women. Anyway, the bottom line is that you should just drink plenty of water and whatever other liquids you like. I hope that helps.
Ken
Well, my curtain call for urethraplasty is tomorrow at 10am… I’ll take any good luck I can get at this point. I’m pretty scared lol
Oh wow! Good luck Philip! Would love to hear form you when it’s done.
Ken
Thinking of you, Philip. Best of luck with your surgery tomorrow, 2/13. May the stricture disappear and be gone FOREVER! As Ken says, we’d love to hear from you when you’re up and healing.
Ned
Hi all,
I had my urethroplasty on the 26th of January at CRU in Irvine, CA. My first follow up was on February 3rd. Since that time, I have been taking things easy in Phoenix for a couple of weeks. The time is near for my VCUG this Friday. I have to admit, I’m nervous. Probably more so than when I was approaching the main surgery. I guess its because I have so much time and effort invested at this point.
The pain has mostly subsided. If I sit too “upright”, or near the front edge of a chair or couch frame, the pain shoots though me like a bolt of lightning and then aches for about an hour. The incision area certainly tells me when it doesn’t like something. But other than that, its mostly pain free. The sutures still catch on my underwear, which can get my attention unexpectedly and at random times.
I’m certainly dog tired of the catheter tubes and changing from a night bag to a leg bag every morning and then reverse at night. I will call this “THE PROCESS”, meaning dragging out the alcohol swabs, hose clamps, bacitracin, antibacterial shower wash, etc etc. It takes me 30 to 45 minutes to move from bed to being dressed for the day. Nothing happens in a hurry when you are wearing two catheters. If my SPC and Foley are removed this Friday (and I pray that they are), it will certainly be a monumental day indeed.
I hope the surgery is going well for Phillip. Many of us have been where he is now, and its a bittersweet moment to wake up knowing that the surgery is done, but that you still have a few hills to climb to reach homeostasis. I look forward to hearing from him.
Lastly, I was thinking the other day about how helpful it would have been early on to have a
Pre-SPC, Pre-Surgery, pre-recovery (basically a starter kit) shopping list. Having all the items stocked up and handy would sure be nice. I may take the plunge and draft something for those just entering this process and can use it prior to their first SPC placement. If they are like me, and mostly handling these things on their own, it would be helpful.
I will post my results after my tube removal on the 17th. Happy Valentines everyone!
Take care,
James
Good idea James. Let me know if you get a draft done on that. And great news that you’ll be catheter-free on Friday!
Thanks for the post.
Ken
Alright guys– surgery done… woke up not feeling in too much pain until the surgery meds subsided… Was sent home with hydrocordon, antibiotic, valium to prevent erections when sleeping, stool softners, and that special mouthwash for my mouth wound…
First couple day stuck with leg bag as I’m not going outside anywhere in particular for at least one or two more days… I didn’t have any bleeding in my bag, but I am noticing getting some small amounts of blood tht oozes out of my penis hole that I wipe off and put some polysporin on. Changed into some boxer briefs last night and replaced gauze under my scrotum with new gauze– wasn’t too bloody under there at all but very sore when getting up or getting down.
Is occasional blood that oozes to ur penile opening totally abnormal first 2 or 3 days post surgery? But like I said, no blood in my actual catheter bag. My ball size isn’t crazy big but def more enlarged than before and one side of my balls is a little darker/more purple than the other size– but not grapefruits or anything like that. Back to icing it off and on nonetheless.
I attempted to sit on toilet last night to see if I needed to do a number 2 but body just not ready as of yet. Really afraid just sitting down will push my catheter in too far or out lol… like my god what an adjustment.. Going to try again later today to see if some is ready to come out.
Biggest concern, is it normal to have some light amounts of blood come out of opening to penis, by the tube the first few days? So paranoid I’m gonna ruin the site of the graft. Oh, and speaking of erections, on one hand I suppose it’s a good sign my nerve endings down there are nt too bad off since I woke up in some pain this morning once I realized was getting an erection, but also worried that’ll jack with my healing process.
Going to switch to day bag later today and see how that goes, but for now been using two different night bags just so I have more time to rest these first few days b4 I get into more and more activity with catheter in me.
Thanks for your help and support guys
Wow! Congrats on getting through it, Philip!
During these first few days I would not hesitate for even one minute before calling your doctor’s office – even if it’s just to talk to someone to pass on your question. I did this like a dozen times:-P. For the blood coming out around your catheter, you should call. I didn’t have that. However, it IS normal to have bits of – for lack of a better word – “viscera” that gets on the tube as it gets pulled in and our of your penis. I had some red color in mine after surgery and in the mornings I would clean it off with a gauze pad and alcohol. Then I’d put the bacitracin on the tip and go about my day. But I never had actual blood trickling down the tube. Then again, they didn’t do a graft on me. But I say call now.
If you think about it though, you did have cutting and pulling and sewing going on up in the urethra. So it isn’t all that odd to think that as with any wound, there might be some bleeding shortly afterwards. And since there is no dressing up there, only a rubber tube, that blood would have nowhere to go except to come out around your catheter. But like I said, definitely call.
Yeah, it’s quite an adjustment, right? I hope these next few weeks go by fast!
Best of luck with the healing process!!
Ken
Also, is it normal when moving around w ur bag and catheter in u to get occasional “tingly” sensation on end of penis? Once I sit back down again and relax that subsides… My doc was saying in most cases that’s caused from bladder spasms, etc.
But bottom line, no blood in cath bag at all, clear/yellow urine… just some occasional discharge outside the tube from my urethra of some blood but nothing mind boggling (mind you it’s barely day 3 post surgery) I’ve had no abdomen pain since surgery– although stomach is a little bloated from near where they injected that anti blood clotting med b4 surgery. My actual balls are enlarged (not too crazy big, but one side of them is a little darker than the other) and overall am sore down in that region w the groin where incision was made.
Thanks again guys.
Philip,
Actually the tingling is normal. I definitely had that. I didn’t think mine were caused by bladder spasms, but rather by the pressure of the tube coming out of the tip. It’s not used to that:-P. I think you’d know if you were feeling bladder spasms. They aren’t fun and you feel them…well…in your bladder.
Like I said in the other reply, you should call about the discharge. I don’t THINK it’s a huge problem. But this is not something to mess around with. Call your doctor’s office ASAP on that one.
But other than that, it sounds like things are as they should be:). You’ll be so happy when they take the catheter out and you pee like a racehorse:).
Ken
LEt me clarify— no major dischARGE– just slight occasional discharge that’s subtle and I just do like u did where u wipe w wipes around the opening of penis where tube comes out and around the tube to keep things clean…. and inside the tube, no blood at all. Only a bit of discharge… not even discharge really, like specks or so that dry up fast.
I’ll definitely call though and ask about that. Last question, were your balls swollen for a few days post surgery as well?
YEah, it’s from the tube occasionally sliding more in the penis and out and with that I’ll get that occasional slight red discharge that’s essentially specs of blood but nothing that’s dripping out of my hole and all over my cath tube. I just called to be on the safe side nonetheless. And like I said, inside the actual cath tube it’s all clear, and have had no pink urine or anything funky since surgery.
Yes I had swelling for a week or more as I recall.
Ken
Matter a fact , I remember my actual urologist telling me months ago it’s not uncommon to get some “oozing” of blood out of penis (not inside the catheter but on outside) that oozes out around the tube first few days post surgery.
Any tips on how to properly sit when trying to take that first number 2 with the catheter tube coming out of me?
And just got off the phone w them and yes, totally normal to have some oozing of blood out of the penis hole around the catheter a few days after surgery. So that’s a relief.