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Hi everyone! Does anyone have any experience with an anterior/penile urethral stricture due to a failed hypospadias repair?
My fiance had a hypospadias repair as a baby with no complications, however about 6 months ago he started experiencing slowed stream, spraying, and recurrent UTIs. He was diagnosed with a stricture about midway down the shaft of his penis and is scheduled for the first stage of a 2 stage urethroplasty with buccal mucosa graft on 11/17.
He doesn’t love doing his own research on the topic as a lot of the misinformation and bad stories out there are upsetting to him, so I’ve been looking for all the good information I can get for him and have found this website extremely helpful. If there is anyone out there with experience with this type of stricture I would love to know about your experiences – recovery, pain, life with the graft, etc etc.
Thank you!
Hello,
while I had a stricture internally, unlike your fiancĂ©, I can tell you a little about my experience with the graft removal and healing in the mouth. I was completely freaked out about the tissue removal and later healing. It turns out in my case to be almost a non issue. I had almost no pain at the donor site. I would suggest that you ask about what they do with the donor site. I am told that some stitch it up and some don’t. Mine was cauterized and not stitched. My surgeon said that she found that to be less painful and quicker healing. I am a complete wimp and have a low pain tolerance. Overall the whole thing was not nearly as bad as I thought it would be. I think us guys get super nervous when we have to have anything done to our male anatomy. It is our worst nightmare. Trust me the guys here all get that and if you could talk him into reading here a little, it may calm his fears. There are some great posts here about what to expect.The web in general is a nightmare with way too much bad or not correct information. Here it is much more realistic and not populated by people with horror stories. Here you will find caring people who have been through it, will answer questions and offer compassion and support. I quit reading everything but here, in the lead up to my surgery. The other thing is talk to your surgeon. Mine was super nice, she (yes I trusted my surgery to a wonderful female surgeon) answered all my questions and even let me pick out music in the OR to help calm me.
Assure him that his fear is much worse than reality. I also was not afraid to ask for something to calm my nerves during the tests before and after. Last don’t be offended if he sort of shuts down right before. My wife was a little upset that I quit talking and just pulled into myself the last day. It is how I coped. I think a lot of guys are like that.
We are all pulling for him!
Hi Wentzel, thank you so much for your response. You’re so right.. this website has been so helpful for us, and we both took a lot of comfort from what you wrote.
He feels ready and we’re anxiously awaiting a good urine stream!!
UPDATE!
Hi again everybody.. I wanted to update this for anyone it may help in the future. My fiancee and I found what we read here to be far and away the most helpful to prepare for his surgery.
One week ago today my fiancee had his anterior urethroplasty. Originally his doctor was sure it would be a two stage surgery, but after his pre-op urethra ultrasound his surgeon gave us some hope that he may be able to do it one since the stricture was pretty small. We left it in his hands to make a “game time decision” to give him the best result. We knew there would be a buccal mucosa graft regardless.
His doctor was Dr. Lee Zhao at NYU who was incredible! His surgery lasted for about 3 hours, and was ONE STAGE! His mom and I cried happy tears when his surgeon told us that.
As far as his mouth goes.. He came home with a “second skin” surgical dressing in his mouth which started coming out in small pieces after about 4 days and is completely out today. It helped protect and cushion the surgical site, though it tasted pretty nasty and smelled really bad too. It did its job though because he barely had any pain in his mouth and was able to eat normal food in small bites two days after. For pain he was prescribed Magic Mouthwash which truly was magical for him. He did a swish and spit a few times a day and it totally numbed the area to the point where he never had mouth pain. He was encouraged to open his mouth wide many times a day to ensure he didn’t lose any range of motion which he was able to do without a problem. His cheek looked swollen for a couple days but reduced back to normal. He used ice a few times over the first three days which also helped. Overall, he was expecting his mouth to give him a lot of trouble, but it didn’t at all. Our fears were much much much worse than reality.
Now for the urethroplasty.. again our fears were SO MUCH WORSE than it was. I can’t emphasize this enough.. we were so scared of the surgery, but were so pleasantly surprised at the lack of pain. He came home with a foley catheter with both a night bag and leg bag to use for going out. The tubing with taped up to left side of his stomach, across to the right side, and then down to his right thigh. The doctor said this would help eliminate any tension on the tubing and be comfortable for him. It’s been great (though we had to shave his stomach and leg when we got home from the hospital to be more comfortable with the tape) for him and the urine has been draining well and he’s not bothered by the catheter. It’s been quite a nice break from the urination troubles he was having for months. The bags are easy to empty and switch between. We have been cleaning them daily with soap and water and doing a thorough clean with vinegar and water through the bags every three days.
He has a small incision on the underside of his penis with internal stitches that will dissolve. We can’t see them, but there is some scar glue that is peeling off daily with showers. He has not had any sustained pain throughout the first week of recovery and has had NO PAIN at all for the past 2 days. The only pain he has had was brief but sharp that came with moving from sitting to standing when the tubing shifted around and disturbed the surgical site. It would be sharp for a few seconds and subside completely over the next minute once he settled into his new position. We have been alternating advil and tylenol for pain control but have been reducing it daily without any pain. He has taken one percocet before bed each night and been able to sleep through the night without a problem, and he plans on going down to half a pill tonight for a couple nights and then cutting it out completely.
He’s has some erections throughout the night. He said the first couple gave him some temporary dull pain, but in the past couple days they haven’t been painful, just uncomfortable.
Some helpful hints… He has been taking stool softeners daily which prevents any straining with bowel movements and he has been comfortable in the bathroom. He has been sleeping on a foam wedge pillow. He said being in that position helps keep his erections more minimal than if he is sleeping completely flat. He also finds that using a large piece of gauze around his penis adds some cushioning and makes him feel much more protected and comfortable.
He was never bed bound. For the first 2 days we just walked the hallways of our apartment building, but thereafter we have gone out each day for short trips. Today he drove for the first time! He is almost back to walking at full speed, but he has been moving slowly and cautiously to avoid jostling the catheter around.
Overall, the recovery process has been great. We were terrified going in, and we both felt strongly about writing this update to help ease any fear for any men going in for this surgery. PLEASE feel free to contact me for any support you need.. the unknown was scary, but knowing what we know now, I would love to help out anyone however I can.
He goes for catheter removal in about a week and a half… will update again then!
Thanks for updating all of us and sharing.
You’re right about the fear being worse than the surgery. It’s a horrific place for them to be slicing up tissue, but it’s not nearly as bad as it sounds.
Having said that… Your fiance might have a bit more discomfort in the coming days or weeks as the nerves start to wake up, so don’t be alarmed if that happens. It’s not terrible pain, just a dull or sometimes raw ache that usually settles in the scrotum, and it can last for months. Other feelings like weird twinges and electric shocks can happen too, it’s all part of the nerves healing.
Keep us posted on his progress.
Clayton
Make sure he keeps up on the mouth wash and also the stretches. It really helped me. I did lose the ability to whistle (temporarily but coming back) but otherwise it was not nearly as bad as I had imagined.
Also let him know not to stress over the catheter removal. I was terrified at that and it was a non-event. It was over so quick that I barely felt it. I had a wonderful RN that explained everything and had me take a couple inhales and exhales and then it was out. It was like a million pound weight off my shoulders.
Last I bet the first time he goes normal, he will be as excited as a schoolboy! I woke my wife up at 4:00am to tell her that I had to take a step back from the toilet to keep from missing! 🙂 I still smile a little each time in amazement at the pressure.
Sounds like you had a wonderful thing to be thankful about this year! I know I did.
greg
Some great information there for those who may have to go through a penile urethroplasty. I too was very surprised at the lack of any pain I experienced through the recovery of my urethroplasty. I think we read too many horror stories on the internet and forget that the majority of patients experience no complications post surgery
Barry,
I completely forgot to update because he is back to life as usual like it never happened. His recovery continued to go smoothly and relatively painlessly while the catheter was in. He got uncomfortable and annoyed by the end, but that was always to be very expected. He was able to completely eliminate the serious pain killers as well as advil and tylenol after about a week and a half.
The catheter removal was a complete non-event and he has returned to peeing standing up with absolutely no issues. He said his stream has never been stronger and he’s able to empty his bladder so quickly. The doctor was very impressed with the flow rate at his follow up appointment and he doesn’t have another follow up until November (a year from the surgery). Six months later and he still says the stream is perfect.
Sexual activity returned to normal pretty quickly. Erections stopped being painful and uncomfortable as soon as the catheter was removed. I believe we were told to wait 4 weeks from surgery for any activity which we did. He initially had a little discomfort when the incision area was directly touched (with masturbating or foreplay) but never had any pain with actual intercourse. I think it was about 3 months post op that the over sensitivity went away and we really haven’t thought about it since!
Would love to continue to help anyone who is looking for answers and support!
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