November 8, 2013 at 10:28 pm #669
Hey all. I’ve been going through some issues with strictures and found your site. It seems like everyone here is looking for answers and support, so I figure I’d share my story.
I went to my PCP early this year for a slow stream. Sometimes it hurt to pee, other times it didn’t. In general, two people would pass me in the urinal next to me before I was done. To be honest, I just figured that was the way I was made (been living with this my whole life it appears). My doc referred me to a urologist who, after an initial uroflow, recommended a cystoscopy. The cystoscopy was very unpleasant, primarily because the doctor didn’t believe that I had a stricture, and only took about 5 seconds before he pulled it out and said he needed me back for a RUG.
The RUG was similarly unpleasant, but mainly because I had no idea what to expect. The doc showed me the images and pointed out that I have a bulbar urethral stricture. He said the two main options here would be DVIU and urethroplasty. However, he was VERY squeamish about the idea of urethroplasty, so I agreed that we could do a DVIU.
The DVIU procedure seemed to go well, but my doctor really didn’t talk to me about it. He left some instructions with the nurses about what I should be doing, and scheduled me to come back in to get the Foley removed and learn how to self cath. Btw, an 18 French Foley is really unpleasant. I had it in for only three days, but I was counting those down.
After getting it removed, he told me to start cathing myself 3x a day for at least a month, and then we’d meet again. At this point, I figured it wasn’t the best idea so I did some research online and discovered that 3x a day can really mess up your urethra. I decided to search for myself for a good urologist (thank god for open access…) and discovered one at Johns Hopkins. I emailed him and surprisingly he emailed me back right away saying without further information that 3x a day for so long would not be a good idea.
Long short short, it has taken about 6 months and my stricture is possibly worse than it was originally. I still do not have too much pain with it, but very recently i have been incredible close to not being able to urinate (<10 ml/s easy). I set up an emergency RUG with him for this Monday so we can take a look at what’s going on, but something will have to be done and SOON.
From my research, it doesn’t appear that there’s any reason to perform another DVIU. I’m 28 and my first one didn’t work, so it’s very unlikely that another will be successful. I’ve had a long time to think about and research urethroplasty and, as terrified as I am of it, i think it’s the right decision. My doc has performed probably over 500 complex urethral reconstructions and has assured me that mine is a very simple surgery (bulbar and probably ~2cm). Really hope I don’t go into retention before I can have this done though (the suprapubic concept is a bit terrifying!).
I’ll keep this updated with my progress. Hope you all are having a good holiday season!November 13, 2013 at 2:11 am #677
Hi crazytrain, it
s incredible how similar your story is to mine. I'm 31 years old and was diagnosed with a proximal bulbar stricture almost 2 years ago. Im from South America and I was in Puerto Rico last week for work and I almost went into urinary retention. Since my diagnosis, I have thought about getting a urethroplasty, however, up until July I really did not think I needed one since I had read in various papers (one by Dr. Mundy in London) that only if you’re experiencing UTI
s, pain, episodes of urinary retention and a flow rate below 5 ml/sec you should look into getting treatment. I have never had a UTI before, no pain while urinating, simply a slow, weak stream. However, since July things have begun changing, every 2 or 3 weeks I will notice how my stream gets even smaller and weaker to the point where at times I am only releasing drops, this happens for 2 or 3 days and then it reverts back to the usual stream. I thought I could wait a little bit more to see if this changed, however, as I said before, I almost went into urinary retention last week. I was lucky enough that as I tried going to the bathroom one last time (at the ER) I felt like somethingceded’ and I was able to release urine. I had already accepted in my head that I would have to get the suprapubic tube in! Close call!! This happened on november 6th and your post was two days after, I actually read it 2 hours after you wrote it but had not had time to reply.
I’m afraid urethroplasty is my best option and I am also a little skeptical but conscious that this is a possible long-term solution to my problem. I am actually flying at this exact moment from Detroit from seeing the surgeon that will be operating on me in december. I actually went to John Hopkins almost two years ago to get myself checked out, however I only got a RUG done at that time and I decided againt further treatment (wait and see strategy).
My surgeon in Detroit is considering doing a buccal mucosa graft urethroplasty placed ventrally even though my stricutre is suspected to be smaller than 2 cm, the reason for this is that his experience (performed over 600 urethroplasties) has shown that sexual complications run towards zero using a BMG. This makes sense as he does not need to transect the urethra or mobilize as is necessary when an end to end anastomosis is accomplished. Have you done some reasearch on this as well? At first I was freaked out at getting my cheek harvested, however it now makes sense to me now that this is a very good option. I guess if the graft fails I can always have a second opportunity and get another graft there or have the scar tissue excised and have end to end anastomosis performed.
Anyway, I see that we are both in a similar situation and just wanted to send some notes on my experience and thoughts.
DanNovember 15, 2013 at 11:59 am #678
Hi Daenval. Sorry to hear about your difficulties. I actually went to the ER a few days after that post due to perceived acute retention. Same as you, I had diagnosed everything in my head and knew i was getting a SP. Apparently, the type of liquid they use for the Retrograde Urethrograms can have the effect of making you feel you need to go. It turned out just fine (no cath at all), but was quite scary.
Also, it’s interesting you bring up a 2-3 day worsening. I’ve had similar things happen. My stricture is generally worsened by sex unfortunately. The day after having sex, my flow will drop significantly, and about 2-3 days later it will ease up (but still well short of what it was prior). The last episode dropped me from ~16 ml/s to ~8 ml/s and I have had to swear off sex until this is fix (girlfriend not happy about this).
I’ve done the same research as you I’m guessing. I definitely saw research articles on sexual side effects between the methods. My doc believes that there shouldn’t be any sexual side effects of this surgery and has told me he plans to do end-to-end. The only drawback I’ve seen on the buccal side is that it seems to have a slightly lower success rate. Although I don’t think there’s been enough research to fully determine which type is preferred.
I’ve been scheduled to have my urethroplasty done 11/26. Also have family over for Thanksgiving… So that should be interesting.November 17, 2013 at 2:28 am #679
Who is your Doctor? I live in CT and I need a urologist I can trust. If that means going to John Hopkins, then that is what I will do.November 17, 2013 at 3:10 am #680
Hi neil. His name is Dr. (Name Hidden). He’s primarily a surgeon — this is good since it keeps him up-to-date in his practice. Mind if I ask what’s going on?
On a side note, I’ve been having sharp pains in my lower back/kidney areas. My guess is it’s either a UTI or a kidney stone. This is probably an effect of how I have completely changed my way of life due to problem — stopped working out, stopped having sex, starting drinking less, stress, etc. Oye.
November 17, 2013 at 7:39 pm #681
- This reply was modified 8 years, 6 months ago by Ken Theriot.
Had a catheter put in me back in May for no reason. The Doctor was the head of the Emergency Room I went to and came up with some bullshit reason of needing a clean urine specimen. I think the reality of the situation is he used me to train some dumb nurse. The procedure went wrong and after it, I noticed blood coming out of the tip of my penis. The sad part is when the nurse told me I had to do it I said I don’t think I should be doing this. She gave a shit less and completely disregarded my feelings. Ever since that day I’ve had painful urination and I’m totally traumatized by the whole thing. Sometimes when I start my pee it feels as if my urethra is ripped open by the stream. Most times after urinating I sit down and more urine dribbles out with a razor blade type feeling to it. I haven’t had sex since the incident with my girl in fear that it’ll make things worse. I feel so humiliated because I noticed some pages were omitted from my discharge paperwork that day so I ordered my full records and the doctor falsified the records to say I was unable to urinate on my own. I’m assuming he did this to cover his lying self. Needless to say, I turn 34 in December and I feel as if my life is over. I’ve been to two urologists and they said it was prostatitis which is basically an easy way out. My primary care says I’m being too sensitive. Before all this happened I loved life and new experiences. Now I feel as if I have nothing, but pain to look forward to in the future. I have anxiety every time I use the bathroom and rarely leave my house anymore. I have no more trust in Doctors. It’s quite sad. When I called the ER Doctor a few weeks ago to ask him why he lied and falsified the records he stuck to his BS story. I told him he ruined my life and trust for Doctors. I’m sorry to ramble on. That is my sad story. The day that catheter went in me my life was altered in the worst way, permanently. Every day is a battle. I try to play my guitar to keep my mind busy. It helps a little, but then I have soreness in my lower back and my bladder has been tender, as well. I drink as much as I can, and it’s mostly water. I no longer can have acidic beverages. Coffee and soda are out of the question. The only urologist who I trust is cross-country in California. His name is Dr. Joel Gelman, but I don’t have the money to see him. My girl landed a job out there, but we still can’t afford to see him because the job will not support the cost-of-living out there. You’re not alone. At least your brave enough to confront it. I’m a grown man and I’m too scared to get more things shoved up there. You were saying you were born with a stricture?November 18, 2013 at 1:32 am #682
Wow. That’s really a terrible thing to happen. There’s no reason at all to catheterize someone who doesn’t need it (your situation being a case in point). Sadly, I can say I’ve seen this story more than once in my googling. I’m really not sure what would compel doctors to use a perfectly healthy person to test out cathing. And to lie about it after, I’d consider malpractice (that’s just me).
Did you have a cystoscopy or rug performed? Hows your flow? As for the razor urination, i know that feeling. I’ve had it a few times actually. After all three of my RUGs I’ve had that sensation for a few days. More importantly, after my DVIU I had burning pain and a lot of shooting pains through the day. To this day, I’m not certain if my first doc performed the DVIU correct, but the pain lasts today (although it has been steadily declining and I’ve been getting used to it). If they knicked your prostate, it’s possible the pain you’re feeling is healing. Just be mindful of how good your flow is — stopwatch and a measuring cup have worked well for me.
I honestly think one thing people overlook is that you are the best advocate for yourself. Read up online, have tests done, and think about what you’re feeling. The docs might not fully understand your situation, and it’s in your own best interest to hypothesize and test what’s going on. For instance, I’ve been recording my flows and PVRs. My initial PVR was 30 ml or so. Then, at JHU, my PVR jumped to 100 something. My doctor warned me about possibly having to cath myself to relieve the residual. I really didn’t think I was carrying that much, so I tested myself at home with a PVR cathing (less than 30 ml out). It turns out that the doc’s office was using an older bladder scanner and the new one was able to properly determine how much I was retaining (I have a jumbo bladder apparently).
As for confronting it, I was pushed into confronting it originally by my girlfriend. Having it all my life, I actually didn’t realize I had it. All I realized was that I would pee a long time and would spray. After getting the initial news of a stricture, I was the same as you. I was terrified about what would happen and am REALLY not one for surgery (knife-o-phobia?). I am coming to terms with it simply because I must. My life has been dark for a while (discovered this back in January actually) and filled with concerns about surgery, concerns about not being able to pee (try explaining that to someone btw..), and concerns about premature aging of my bladder. I’ve researched all I can on the matter, I know what it is, what solutions there are, and I understand the risks involved both ways. At the end of the day, I find solace in knowing that I really have no other option but to get this taken care of. If I don’t, I risk more damage to myself and possibly really really bad situations (acute retention).
Definitely go get another opinion if you feel the docs are wrong. Advocate for yourself. Often times you will know more about the situation than your doc (minus the fixing technicalities 😉 ). Stay strong!November 18, 2013 at 6:09 am #683
Thanks for replying Crazy Train. My flow is normal sometimes and other times it’s just not consistent like it was prior to the catheter experience. Tonight I had some sex and I noticed afterwards that I had an urgency to pee. The stream was strong, but I leaked a lot after. I always leaked a lot after peeing prior to the catheter, but it didn’t hurt and it came out right away. Now it leaks much longer and it feels like it’s stuck. As soon as I sit or bend down to pick up something more will leak out. I have yet to have a cystoscopy,or a rug. I plan on contacting a urologist at Yale-New Haven Hospital. They have a top-tier urology program. Maybe tomorrow I can get the courage to call them. I have to do a urinalysis with my PCP, this week. That’s when I’m going to get a referral to Yale urology. The only thing that is tough is that none of Doctors in the state of CT deal with strictures. Yale refers to it as voiding dysfunction. Are you having the urethroplasty? If you do, please give updates on the procedure and the recovery. Also, how hard is it to catheterize yourself? Also, what do you mean by spraying? I think the reason they hurt me when they put the catheter in is because they used to big of a sized catheter and I don’t recall the girl lubricating the catheter, at all. I’m not the most well hung guy in my flaccid state. I guess that’s why having anything else put up there scares me. I’m scared it could do further damage.November 18, 2013 at 12:31 pm #684
Having a normal flow is definitely a positive. It would seem to me (read: not doctor) that something got knicked during insertion and that it’s working on healing. However, having a lot of leaking even prior to the cathing seems like the underlying issue. Whatever is causing you to leak was likely aggravated by the catheter.
As far as sizes go, you’d be surprised what can fit in your penis. I remember when I was told they wanted to go up there on me, I didn’t think anything would fit. I was partially right because I had such a large stricture. The initial cystoscopy was painful because they didn’t think I had a stricture. When he was up there, he eyeballed it at a 9 French (3 mm) passing. After my DVIU, my doc fitted me with an 18 French (6 mm) Foley — not fun. I think the cystoscope is either 18 or 16.
When I was first shown how to cath myself, i had a panic attack. I never had one before, but that sure did it. But honestly, it turns out its not so bad. It’s a strange feeling that initially is felt as pain but I don’t think it truly is. It took me a good 10 minutes to insert it the first time (the nurse was getting irritated lol). But you get more comfortable with it and are able to do it faster; I think I got mine down to about 30 seconds after a while. One note, however. If I were to do it again, I’d go for the self-lubricating catheters. I get the impression that they have a better spread of lubrication on them and overall should make the process easier and safer. Also, never force it. If it can’t go forward, pull it back and try again, but do NOT try to push through as this can lead to more problems like strictures and false passages.
I am having the urethroplasty. It’s scheduled for 11/26 (cross your fingers on that day…). I definitely plan on updating the thread on my progress. Oddly enough, I take comfort in seeing old dead threads from others having the same procedure. They generally have the same tone, and then stop being updated (supposedly due to the individuals moving on with their live. that sounds wonderful.). I’d be more concerned if i saw a bunch of active threads of people years after their surgery complaining about it, but for the most part that doesn’t happen.
Spraying is a tell tale sign of something wrong down there. When I was little, I’d actually have two separate streams coming out going in different directions. You can guess this ended badly for me as it would get on the walls and my mother would be furious with me. Sadly, she never realized that it was a defect (and accused me of having terrible aim…) and so it continued to plague me. After my DVIU, I was actually able to stand to pee into a bowl again without fear of urinating outside the bowl. Recently, it has gotten back to the point it was before and I have to sit to pee.
Be strong and make the call. If something is wrong then you are doing yourself a favor by identifying it now rather than waiting for complications of it to arise or to worsen to the point where a solution now is no longer an option.November 26, 2013 at 12:32 pm #700
Hey Crazytrain86, I wish you the best on your surgery today, let us know how you do.
DanNovember 27, 2013 at 8:54 pm #701
Hope all is well, and you did okay with your surgery Crazytrain86.November 30, 2013 at 9:40 pm #705
Thanks for all the thoughts during this time. I did indeed have the surgery on Tuesday (26th). The waiting was killer, as my doctor was about 2 hours behind due to a longer than anticipated first procedure. However, they got me in the room, put me under, and off they went. The anestesia worked as advertised so i didn’t remember anything, and had a nice Morphine button at my disposal until i left the hospital (was feeling pretty decent at that time).
When I woke up, both of my hands were fully numb in the thumb, first, and middle fingers. I have a bit of carpal tunnel problems, so what I’m guessing happened was they kept my wrists at a strained angle the whole time. Even today (4 days post surgery) I still have some tingling, but its going down and should be fine.
When you hear about swelling, you might not fully appreciate how bad it is. For me, my sack has inflated to a bit over an orange and is entirely black. The skin is a bit sensitive but my testicles don’t seem to hurt. I think the swelling has started to go down, but I’m not entirely sure. I’ve learned to sit in a couch potato position with an inflatable doughnut under my butt and a towl in the doughnut to support my enourmous and heavy sack. Once I’m going in the day, the pain isn’t too bad and I’ve recently tried weening myself off of the oxycodon.
I have no idea what the taint side of my body looks like. I’ve been too nervous to look at it, and ask my girlfriend to clean it and monitor it for me. It’s sore for sure, but not terrible.
The Foley catheter is being a bitch. I’ve had one in for a breif stint before, so i knew what to expect. However, that still doesn’t make certain things like sleeping any easier. I tend to wake up in enormous pain from the catheter causing my erection to go an uncomfortable direction. I’ve tried a few different ways of sleeping, but it still hurts. Also, last night i managed to sleep walk again and something caused more bleeding in my urethra. Not sure what it is, but i’m nervous that I have caused another stricture to myself.
Erections are working for now. Penis is still sensitive. Body definitely wants to get its energy off despite these uncomfortable things. Far too early to tell if there was any shrinking, ED (unlikely i think), penis deformation, etc.
I haven’t been able to schedule a time to get my foley out yet, although it should be this coming Friday.
Anyway, that’s my update for now. Let me know if you have any questions!December 2, 2013 at 4:29 pm #706
Swelling has gone down every day so far. My scrotum is still rather large, but it has wrinkles back and is changing color from black to purple/pink. Hands are fine and no longer tingling. I have noticed that I’ve lost sensitivity in my scrotum, but I think that’s expected with this much swelling. I also have found that skin near the incision areas are completely numb. Again, this seems normal and I will continue to monitor it.
Erections are still going on whether I want them or not. Unfortunately, I think they are becoming a problem since I wake up with great pain multiple times per night. I am also blaming the erections for my continual bleeding from my penis. It’s not a lot of blood, generally about two drops I have to clean off the catheter a few times a day, but I’m concerned that this is a sign of damage inside the urethra. Can not wait to get this Foley out.
Foley should be coming out this Friday (6th). Although I will be asking my doc if I can get it out early — again due to the pain and bleeding from erections. My size still seems fine. Again, maybe 90% of what it was before, but all in all it’s still a decent size so that’s ok.
Woke up with massive main this morning when I have involuntary spasms at my perineum. I’m hoping this is just due to some strain that has been placed on it from Foley erections. We’ll see I guess.
Still no poop.. It’s been about a week now since I last pooped and I’m a little worried. I’ve now taken fiber supplicants that usually give me the runs, a couple stool softeners that have always worked in the past, and two maximum strength laxative tabs that gave me gas but nothing else… I’m going to be giving the laxatives another shot and maybe I can gain some headway. It’s a rather strange problem to have, but constipation could REALLY be a problem here.
Overall I think this is going well. I’ll keep you posted.December 2, 2013 at 5:38 pm #707
re on day 6, awesome!! Glad to hear youre doing fine, things will slowly look, feel and get better. Erection size should return to normal down the line, you should be happy you
re 90% there 6 days post-surgery, in no time youll be doing better than that.
Just curious, how long did your surgery take in the end? How many days did you stay at the hospital? I
ve never had a catheter in me before, I think this is the part I am dreading the most, its going to be 2-3 long weeks for me but I will try and be as strong as others have been. What is the pain like? Is it a burning sensation? Pins and needles? The fear of getting another stricture due to the catheter is annoying, I am willing to support the pain so long as I know it isn`t going to cause me the same problem that brought me into this situation, here we just have to be positive, I believe the chances of this happening are low but I will consult with my doctor to see what he has seen in past patients…
Anyway, hope to hear you are getting better day by day….
DanDecember 3, 2013 at 4:58 pm #708
My surgery I’m told took about 3 hours. However, I think an hour of that was prep work while I was out (shaving, drawing stuff, idk). My doc only scheduled me for 2 hours.
I only stayed over night at the hospital. I was still classified as an out-patient since I didn’t actually stay at the hospital for 24 hours.
Yeah, the catheter is something I think everyone dreads. I know I was dreading it as well, even though I’ve had plenty of them in me before. After my DVIU I had an indwelling Foley and it was terrible. However, this one seems alright. One important thing to remember is that the Foley needs to be taped to you. For instance, mine is taped to my right thigh, same level as my penis and has about a foot or so of slack between the tip of my penis to the tape point. What this does is allows much more movement without your catheter actually moving inside you. When I got my first Foley they didn’t do that (and I had no idea I should), so that’s a lesson learned.
Catheter pain isn’t too bad. As I type, it’s just a little uncomfortable where the catheter comes out the tip of my penis (a little tugging on it right now). Internally, I don’t really notice it. It’s a bit of a surprise when you first get it, so be ready for that. You’ll feel like you really need to pee, when in actuality you already are. If you start noticing some blood color stuff coming down your catheter, make sure you have it taped well. That was the reason my last one bled like that (the damn thing was spinning and moving all around in my bladder. Oye). Also, 2-3 weeks seems excessive to me. I’m getting mine out at the 10 day mark, and I’d argue I could probably get it out at the 1 week mark. There have been studies on removing at the 3 day mark (that seems early) that show most cases will be healed enough at that point to not leak. Removing it sooner may be something to bring up with your doctor.
The surgery site itself is just dull achy pain. To be honest, I’ve had much more pain with my hands and erections with the catheter in place (ouch!) than with the surgery point itself. That being said, be sure to support your scrotum with a jock strap or something similar and place gauze between your inner thighs and your stitches. That will serve a dual purpose of supporting your scrotum (expect that to be much larger than you ever thought possible) and stops the stitches from scraping things (and vice verse).
We’re definitely in the same boat on the pain vs stricture. I can tolerate a lot so long as i know I’m not creating a new problem. I haven’t read anything online that would suggest people tend to re-stricture from a Foley. Haven’t seen one mention to that actually. The only thing I’ve read with catheters is the insertion and removal sometimes causing strictures. Let me know what your doctor says about Foleys and stricture. Especially wondering about the night time erections since they hurt like mad.
On a more positive note, I pooped! It was very painful and labored unfortunately (and bloody!). I highly recommend not letting it get to day 6 before sending in the extra strength laxatives. No reason to be fighting constipation on top of your surgery recovery.
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