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Hey y’all,
Just found this website and am I beyond glad to hear other folks’ stories! I wanted to share mine and get feedback as I have an upcoming ETE urethroplasty in 3 weeks. I want to be as prepared as I can be so I recover well and get cured! I am 30, and I think the urethroplasty is the better option for me because of the long term relief it will offer. It’s been a very frustrating path to get to the diagnosis of urethral stricture, so I want to get rid of it soon! Thanks in advance for feedback to below questions!A few questions I had up front that I wanted to ask everyone before I get into my story:
1) Was urethroplasty the right choice for you? What were the good and bad outcomes after your surgery?
2) What should I be asking my urologist/surgeon at my upcoming consult appointment?
3) What should I do ahead of the surgery to make sure I am well prepared when I am discharged home?
(NB I am not married and live alone)My story:
About 2 years ago I noticed my stream getting weaker, to the point that it dribbled out. I also noticed I was getting more urges to go to the bathroom. I saw a urologist who gave me a 10 day antibiotic for prostatitis, and I was better after I took the ABX. Earlier this year, I began noticing a weaker and weaker stream. In the middle of a big work trip in June, I was getting up multiple times to go to the bathroom and still wetting myself most nights in addition to having a weak stream and feeling like I had to go every 15 minutes.I went back to the urologist and had a bladder scan that revealed my bladder had a volume of over 500 mL post voiding. I got a 10 day antibiotic and a trial of a BPH med. That seemed to fix things. About 3 weeks later, the symptoms returned and I got my refill of antibiotics but they did very little to improve. I was still dribbling, going often and wetting the bed on most nights. It was very, very frustrating because it interfered with my personal life and I was afraid to talk about it with my girlfriend.
I made an appointment with a new urologist because I needed help to deal with my symptoms while my previous urologist was on vacation. I saw a new urologist and got a 30 day script for Cipro, which seemed to work well for first 2 weeks. However, I was still having to go multiple times during the night and wet myself as well. The Cipro eventually took its toll on my stomach and I had GI issues for a few days, so I stopped taking it. My symptoms got worse so I resumed taking it again. I started wearing adult diapers at night just so I could get a full night’s sleep. I also told my girlfriend what the urologist told me so she was more understanding.
I was told it was prostatitis but was secretly wondering if it wasn’t something else. I had stopped drinking much fluid and was not exercising because I was pretty constantly dehydrated. I was afraid to drink much water because it would mean a lot of trips to the bathroom and long nights. My reading about using antibiotics to treat prostatitis told me to be patient as it could take a few weeks for the drug to really be effective, so I wasn’t too worried about the slow improvement.
Things got really serious on a trip with my family. After dinner at a nice restaurant, I got up to use the bathroom. When I tried to go, I was unable to. A few drops of blood came out and I tried my best not to panic but was covered in sweat. I got back to the hotel and my gf suggested it could be kidney stones so I called the kidney stone hotline. After a few hours I tried to go to sleep. I felt a strange sensation later that night and ran to the toilet to find that I was peeing with a very strong stream. It was stronger than I had peed in several years. But I didn’t notice a kidney stone anywhere, just a very small red discharge, a little bit bigger than a pinhead.
I was unable to urinate again the following night and had some real pain while unable to do so, but was patient and sure enough I was able to urinate with a strong stream. When I went back to the urologist, she said she wanted me to go for a CT scan to check for kidney stones. I went and it revealed no stones but my bladder wall was unusually thick. At this point, urologist did a cystoscopy. It was there that she saw a stricture, which she said explained my symptoms! She said strictures are uncommon and it’s possible I never actually had prostatits, but a UTI at the site of the stricture because it was like trying to urinate ‘through a pinhole.’ It also explained my bladder wall thickening as the muscles had grown bigger as they tried to harder to push the urine out.
A week later, I went for a retrograde urethrogram and she said the stricture was less than 2 cm in length, at which point she said I would need to correct it to prevent the long term effects on the bladder muscle, increased future risk of UTI and quality of life.
I had 2 options, urtheral dialation (outpatient surgery with much lower success rate) or ETE urethroplasty (inpatient surgery with longer recovery). I opted for ETE urethroplasty because it sounds like it is much more successful and since I’m relatively young (30 is totally the new 20) so I can hopefully get rid of this for the rest of my life. My urologist was experienced in urological reconstruction and had a fellowship in urological reconstruction even though she is under 40 and she will be performing the surgery with the assistance of another surgeon. I wanted to know a few things from others on this site (repeated from above):
1) Was urethroplasty the right choice for you? What were the good and bad outcomes after your surgery?
2) What should I be asking my urologist/surgeon at my upcoming consult appointment?
3) What should I do ahead of the surgery to make sure I am well prepared when I am discharged home?
(NB I am not married and live alone)1) Im about 2 and half weeks post surgery, I had the end to end urethroplasty done by a specialist in philly. I have had some complications after surgery such as high fevers, loss of sensation in some of penis, a lot of swelling and I have yet to get an erection. With all of that said, I would still have gotten the surgery since it really is the only long term solution. I torn my urethra completely after being hit by a car so I had no choice really. I can say that everyday is better than yesterday. I am still sore and there is some swelling but it is slowly going away. As far as the erections go, I still have the catheter in and get it out next week so I feel its mostly mental thing. im 23 so obviously this is a concern for me but staying positive is key to your recovery.
2) I would ask what type of urethroplasty you will need. You will most likely have the end to end one done over the buccal mucosa where a skin graft is needed since your stricture is less than 2cm. I would also ask how often your dr performs urethroplasties on a yearly basis. My original urologist only does 10 per year. The dr. that I had perform mine does 70 per year. You want a urologist who is specialized in urethral reconstruction.
3) Some guys say to get tight boxer briefs but I thought that made my incision site a little more sore than normal. I guess everyone is different so Id say definitely buy some if you do not already have them. You will also need some sterile cleaning supplies like gauze and saline to clean the catheter end to prevent infection. Your dr will tell you everything you need prior to the surgery though.
Not sure if any of this helps. Im no expert but just what giving you some insight on what Im going through right now. Good Luck!
Roger,
To chime in on your questions:
1. Was urethroplasty the right choice? Absolutely! No question about it. Especially if you can have the ETE. The only issue with the ETE, ever, is whether your stricture can be properly fixed with ETE (stricture needs to be small enough). If someone does have a large stricture or multiple strictures, things can get murky on the topic. But for most, urethroplasty is the gold standard.
2. For what questions to ask, see my post here: Some Questions To Ask Before Your Urethroplasty if you haven’t already.
3. Once you’re home, you’ll want a decent donut pillow, the inflatable kind. The hospital gave me one, but it developed a leak almost immediately. I got one from CVS and it lasted for weeks. Just make sure you stop using as soon as it is tolerable to sit on a normal soft pillow! I made the mistake of staying on the donut pillow for too long and developed a large hemorrhoid problem:-P. Also, I’d say make sure you get some tighty-whities, if you don’t already wear them. It may seem counterintuitive, but you need some pressure and support for your scrotum during healing. Things will hear faster. And it may be a good idea to get some small alcohol swabs to clean the area where the post-surgery catheter comes out. OH, and I recommend getting good catheter securement devices – the kind that stick to your leg. You’ll have a leg bag and you need it NOT to pull on the catheter! The stretchy velcro ones don’t hold up to the weight of bag as it fills up. Your doctor may give you some. But if not, see the home page on this site. There is a little banner where you can buy a 10-pack of GRIP-LOK stickers.
Hope that helps!
Ken
My only regret after getting my urethroplasty was that I didn’t do it years sooner. Everyone’s experience is different, but I can say that during my recovery (while the cath was in), I made sure to take it super easy, ice my balls a lot, and keep everything clean. Get a few jockstraps so you can be in a clean one daily. Get off the narcotics as soon as you can. Try not to get erections while catheterized. Check out the thread I started for more of my updates, if you haven’t yet. Good luck!
Update: been 3 weeks since my operation, I had an end to end urethraplasty which was very successful. I have had my 3 week post op appt and Urethrogram imaging study to show the stricture has been fixed. In terms of recovery, things really weren’t that bad! I spent 3 weeks at home with 2 catheters: one suprapubic which was connected to a bag, and a Foley catheter in my penis which was capped.
Surprisingly, the site of the incision was not that sore once I was discharged. The suprapubic catheter site was more sensitive and took longer to get used to since it was around my belt line. I slowly but surely became more actives and tried to walk at least 12 blocks a day as I recovered.
I was off narcotics and the Valium I was prescribed within a few days of discharge. Some days the pain was more pronounced than others but not to the point where I couldn’t do chores around the house. After the 3 weeks at home, MD said Urethrogram looked good, removed the Foley catheter and I could urinate normally again! My stream was very strong but they left in supra pubic catheter and capped it in case I had trouble urinating normally. In a week, they should be ready to pull that catheter.
Getting back to work hasn’t been too bad, but I have to be careful with how I sit. I wore tight briefs for 3 weeks post surgery but have been wearing boxers more because it’s easier on my supra pubic catheter. I never used a donut pillow, just was careful how I sat down. Now that I am urinating with a strong, steady stream, it’s such a relief to know my stricture days are gone!
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