November 24, 2013 at 10:21 pm #688
Hi, I have found this site really helpful and wanted to share my story as I approach likely urethroplasty.
I’m 35 and was diagnosed with urethral stricture in 2006. I had no idea then that my stream was unusually weak and messy because it had been like that so long. The symptom that finally worried me enough to go see a urologist was bloody drops after peeing. I had a urethrotomy in 2006 performed by my urologist and (after a painful 3 days of foley catheterization) experienced a great stream for the first time. My bleeding — always intermittent — never really went away, and now, 7 years later, my stream is getting weaker and I have even — temporarily — had the very unsettling feeling of going to pee, relaxing my urinary sphincter, and nothing coming out! My urologist tried a cystoscopy last month and couldn’t even get the scope in. The stricture is back. He seemed to recommend another urethrotomy, because of the easier recovery time, but I think it was also because he doesn’t have much experience with urethroplasty. He is the chief of urology at a large Philadelphia hospital, and when I asked him how many urethroplasties he’d done, he said “several.” He claimed to know of no one in Philly who had done “a thousand.” After some lucky googling, though, I found another urologist in Philadelphia who is fellowship trained in urethral reconstruction and (on his website) says he’s done 70 urethroplasties a year for the last 10 years. That’s the kind of experience I’m looking for. And he’s in my HMO network! I have an appointment in a week for a consultation. I would recommend that guys considering urethroplasty research the fellowships in the sub specialty of urethral reconstruction. There are such programs at UCSF, Duke, The Cleveland Clinic, and other locations. I found my prospective surgeon on the UCSF website, which lists the fellows trained there and where they practice now. I hope to update this thread with my experience as I go forward.November 25, 2013 at 1:08 am #689
Here is a list of accredited fellowships in reconstructive urology. Hope it’s helpful. These institutions obviously would also be good places to find expert urethroplasty surgeons.November 25, 2013 at 2:26 am #690BrianParticipant
Your experience has been very similar to mine. I’m 38 and had a stricture for the majority of my life, but it was never diagnosed. I had spots of blood after urination for as long as I could remember and one urologist just assumed it was non bacterial prostatitis, because In was in my early twenties at the time. I was able to still urinate without any major complications until a couple of years ago. It was getting to the point where I had to strain during urination and started experiencing retention whenever I drank a few beers.
I finally had to address these symptoms, so I tried supplements for prostatitis, thinking my prostate was inflamed. The supplements actually helped to prevent bouts of retention, but I started to experience more painful urination and blood after urination. My doctor referred me to a urologist, who happened to be a surgeon as well.
The urologist scheduled me for a CT scan and a cystoscopy. The CT scan was first and revealed that my right kidney suffers from atrophy and had fluid around it, but my other kidney is in great shape and has compensated for the lack of the other one. The cystoscope couldn’t be used, because a stricture was blocking it. The urologist was shocked that I could somehow urinate on my own and scheduled me for an emergency DVIU. This was done last April and I had to wear a catheter for a week. After the catheter was removed, I have never felt better while urinating. My urologist told me that a stricture would most likely return, however he hoped that it would be several years. Unfortunately, this past April the bleeding returned after urination, but I still had a decent flow. The cystoscopy revealed the inevitable…another stricture. My urologist said that my options were another DVIU, self catherization, or an urethoplasty. At my age, he had concerns with another DVIU and self catheterization, because he said this could cause more scar tissue to form and make things much worse. I opted for the urethoplasty with a buccal graft, because he has performed this type of surgery a few times and this would allow me to stay home.
The surgery was performed in the middle of July and I returned home less than 24 hours after the procedure. I really didn’t have much pain and was able to eat normally a couple of days later. After a week or so after the surgery I noticed that the stitches started to dissolve in the incision of the perineum and left a very noticeable wound. This concerned me, so I had it checked out and was told that it would eventually heal. I had the RUG 3 weeks post surgery and it revealed a very minimal leak of the contrast dye in the bulbar urethra. The urologist felt like it would heal on its own and the catheter was removed.
Everything was going well, except for the incision site. My urologist said it wasn’t healing normally and was concerned a fistula may have developed, preventing the wound to heal. If a fistula formed, then it would require a more extensive procedure, which would also include another urethoplasty. I had another RUG at the end of October, which revealed that the urethoplasty was successful and there wasn’t a fistula…great news.
The wound still hasn’t healed completely at the incision site. I still feel it’s because of the stitches dissolving too quickly and the area it’s located. Because I have to sit on it, this area is difficult to heal. They didn’t want to re-stitch it and felt it would be best to heal on its own in order to prevent the risk of infection. The good news is that it’s not painful and my urination has never been better and I don’t have any other complications.
I’d definitively recommend an urethoplasty if you have a substantial structure. If I could do it all over again, I probably would have elected to use a surgeon with more experience to help prevent any possible complications. However, I’m thankful for my urologist being able to cure the stricture and I’m confident that my surgical wound will completely heal, but it will just take some patience.November 25, 2013 at 11:03 am #694
Luke, good luck with your journey. I highly recommend finding the best surgeon that you can. Even travel to that person, if you have to. I have read many great outcomes and many poor ones and it mostly seems that it was due to the quality of the surgeon.
Brian, glad to hear that things went well in October. I have some similar incision issues too. I try to keep telling myself that it is getting better, even if it is slow. I read that the sutures can last for several months inside.
I go for my 4 month follow up today.
All the best,
CNovember 25, 2013 at 4:31 pm #696
Chris and Brian,
Thanks for your replies and I hope you enjoy full recoveries. Here’s a question I’m going to ask the surgeon, but I wanted to get some other perspectives. I have a desk job, and I’m wondering how long it’s likely to be before I can go back to work (e.g. with a leg bag or stopper valve). Did you all have to take a lot of time off work?November 25, 2013 at 8:35 pm #697BrianParticipant
Luke…I have a desk job as well and my surgeon would not let me work until 3 weeks after the surgery. I felt like going back earlier, but he wanted to make sure there wasn’t anything problematic on the RUG. Also, I was given a leg bag at the hospital and was cleared to drive after the 2nd week.
Chris…I hope everything went well with your follow up. My urologist acted like it was odd for the incision site to take this long to heal, but I’ve read other reports that it can take a half year or longer for a complete recovery. Considering this appears to be the only complication, then I’ll take it. Even though it’s at your expense, it’s reassuring to hear that someone else is experiencing the same issue, since it doesn’t appear to be abnormal.November 26, 2013 at 10:19 am #698
Thanks so much. I took the 3 weeks the cath was in off from everything that I was doing. I was pretty much house-bound. It went by a lot quicker than I expected.
From what I have been noticing with my doctor, the most important time is the beginning. Rest and let yourself heal so there are no complications that need to be taken care of later. I credit my success to his conservative and cautious approach to how he performed this surgery.
Hope that help you.
All the best,
cDecember 3, 2013 at 7:22 pm #709
I saw my new urologist yesterday, and I came away very impressed. He is the region’s most experienced surgeon at urethroplasty, having done upwards of 600. He spent plenty of time with me, listening to my history and drawing a lot of pictures for me of the anatomy involved and the different types of surgery that will be possible depending on the length and location of the stricture. I feel like I’m in very good hands. Next week I am going in to have him personally perform a RUG (which he said he can do in 10 seconds, but a regular radiology department tends to make a big deal out of). He’ll read the film right there and we’ll get to talk about my surgical options. It feels good to have confidence in my surgeon.
As an aside, the new urologist was almost indignant that my regular urologist didn’t refer me to him at the first sign of stricture recurrence. He’s very clear that patient outcomes are best when this surgery is handled by a subspecialist.
Thanks again Chris and Brian for your comments. Anyone reading this in the Philadelphia area who needs a recommendation, please PM me.December 9, 2013 at 11:02 am #716
Excellent news Luke. Yes! I agree with this guy. Your outcome will be best if handled by a specialist, absolutely. Like I have said before, someplace in here, my outcome was the result of a highly qualified and perfectionist surgeon. I am so glad to hear that you found someone similar.
All the best,
cDecember 10, 2013 at 2:13 pm #721crazytrain86Participant
Luke — Not to sound like a broken record, but I have to agree with what was said by everyone. In fact, if anyone is reading this looking for advice on urethroplasty, probably THE most important thing is to find a Male Urethral Reconstructive Specialist who has performed this procedure at least 100 times (this is my take at least). My first surgeon was fearful of performing it and I’m very glad I did my research and found someone well versed in urethroplasty. He didn’t give me a number, but said it’s easily over 500 (30 years of experience in primarily performing urethral surgery).
I’m still in my recovery (2-weeks) so I don’t know for sure how this will turn out. My doc has cleared me to go back to work already. I have a desk job as well, and I am fully comfortable with sitting up for long periods of time. If anything, I’ll just leave work early. I’ve been going a bit stir crazy with all this sitting around! Also, from what I’ve read, it can take upwards of a year for everything to heal. That being said, you should honestly be feeling fine enough to get back to work two or three weeks in IMO. My experience is with a Bulbar 1cm stricture repaired using anastomotic techniques.December 11, 2013 at 5:22 pm #723
Just wanted to throw my initial experience out there for you also, Luke.
The first urologist I went to for my issue said’ “Yeah, we do these. About 2-3 a year. But, I would like you to see someone else.”
He tossed me to a surgeon at the Lahey Clinic that when I told him what my first doc said, in response he said’ “I do 2-3 of these a week.”
So that should give you some idea of what to look for.
CTrain – Hope all is going well.December 11, 2013 at 7:54 pm #724
Thanks for the replies, guys. My surgeon performed my retrograde urethrogram today. It was pretty uncomfortable but mercifully brief — probably less than a minute of pain.
I have a 4-cm bulbar stricture, which means I’ll need a urethroplasty with buccal mucosa graft. I’m on the surgical calendar for February 11. Some good news which I was happily surprised to hear was that I won’t have a lifting restriction during my recovery (important because I have a toddler) and my doc thinks I’ll be clear to return to work even before the catheter is out. I’ll spend one night in the hospital.
I’m looking forward to getting this little f***er taken care of.December 16, 2013 at 10:32 am #726
So glad that you have more info. Yeah, that retro urethrogram sucks! I remember that day. But it really gives a better perspective of what needs to be done.
Sounds like you are having a similar procedure to mine. I had a 9cm stricture, tissue taken from one side (big mouth).
Even though your doc said that lift may not be an issue please take some time, if you can. Like you, I have a toddler at home too. My surgery really didn’t line up with his life very well. I missed being able to roll around on the floor and read books to him while he sat in my lap.
If I had to do this procedure again I would but I really would hate to have messed something up to make me have to go in again.
Just my two cents for what it is worth.
All the best to you,
CDecember 16, 2013 at 6:17 pm #728
Thanks for your advice, Chris. My dad is going to come stay with us for the first two weeks, which will be a big help since the kids can play with him and he can absorb a bunch of their energy. I thought about trying to delay the surgery until there was a “convenient time” but then I realized that there’s never going to be a convenient time to be mostly out of commission for a few weeks.February 13, 2014 at 9:01 pm #774
I had my urethroplasty procedure two days ago, with a 4.5cm buccal mucosa graft. There were no complications during the surgery or with anesthesia, and while I didn’t sleep well for my night in the hospital, I was comfortable enough. The graft harvest site in my cheek was much more bothersome than the incision site in my perineum and scrotum. In the morning, my surgeon checked me out and removed the “JP drain” that was collecting blood from the wound and began the process of getting me discharged to go home.
Now home, I’m still pretty comfortable. There is surprisingly little pain or discomfort at the incision site, and with a jockstrap and underwear I feel well secured and the catheter isn’t too uncomfortable. My nighttime erections were fairly painful but bearable. I feel like I slept deeply, which was great. I showered this morning, post op day 2 (not allowed to scrub the incision site), and for the first time got “the lay of the land” — not as scary as I was fearing. My scrotum is not too enlarged, and I don’t seem to have bruising yet. The foley catheter, of course, is pretty weird, but I’m getting used to it. I have been able to eat real food, though I have to be careful because my cheek is so raw and sensitive. I’m on Macrobid, Enablex, and Colace. I have Percocet but haven’t needed it — I’m using ibuprofen for pain control and have since the night in the hospital where I got a little morphine because the mouth pain was too much.
I’m glad to have the procedure behind me and be in the recovery process now.
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