October 2, 2013 at 8:11 pm #644
I think this is a good resource so I just wanted to add my story for those facing this.
Background: age 50, have had urethral stricture problems since having hypospadia surgery at age 10 or so. Have had several hundred dilatations and spent the past several years self-cathing once a week until it reached the point this spring where that became extremely difficult. I had a failed DVIU in early summer where the doctor just punted because my urethra was too damaged and he put in a supra-public cath which I have had since. This was just capped off with a plug that I removed whenever I felt the need to void and was much easier to deal with than a leg bag. The solution was not ideal though as my finger tips got extremely sore from having to pry the cap off several times a day and on a couple of occasions the cap popped out on it own resulting in the extremely embarrassing result of peeing my pants with no ability to stop the flow. I ordered a tru-flow valve on-line which made opening the cath much simpler and I never had it pop out either. My local urologist referred me to an expert a few hours away for a urethroplasty.
I had buccal mucosa graft urethroplasty done two weeks ago at Wake Forest hospital. I had long strictures at a couple of spots , 1 bulbar and 1 in the penis. I was in the hospital for just 1 night (still considered an out-patient procedure). My surgery lasted for 4.5 hours actual surgery time. Several hours later I was able to eat some soft foods without much problem. Granted my pain threshold is probably higher than most (probably a result of the several hundred dilatations which really suck).
I was released from the hospital the following morning after my wife was shown how to help me change my dressing on my penis (which of course is splayed open with some of the grafted tissue). The bulbar stricture was fully stitched up and hasn’t been a problem other than watching how I sit and making sure I avoid getting constipated. The pain has not been too bad, in fact I never took any of the pain meds they gave me, just ibuprofen for a few days. My energy level has still not returned to %100 though and night time erections are uncomfortable (but not extremely). I still have the supra-pubic cath and I now have a foley cath through my penis which drains into a leg bag. This has been a bother since it sometimes slips down my leg, has leaked a time or two and is just a nuisance. My number 1 complaint would be some pain/itching in my scrotal skin, hydrocortisone cream seems to be helping.
I go tomorrow for a 2-week followup and hope to get good news. My mouth stitches have all healed and I have been eating anything I want. I do feel some tightness on that side if I open my mouth wide. The graft on my penis seems to be healing well (after some initial concern of the area looking very dark) so I’ll see what comes next.October 3, 2013 at 9:31 am #645ChrisParticipant
Sounds like you are doing all the right things. So interesting to hear how we have all had those same sensations and tweaks.
I am now 3 months away from when I had my surgery. I feel better every day, it is slow going, but it is always just a little better than yesterday. I hope that helps to keeps your thoughts in the right direction.
The hardest part of the procedure for me was the week after, not only physically but mentally.
Wishing you all the best for a healthy recovery.
cOctober 8, 2013 at 7:39 pm #653BrianParticipant
I’m also 3 months post surgery and everything was going well, except for the incision site. My sutures dissolved fairly quickly, so I immediately scheduled a follow up with a doctor a couple of weeks post surgery. I was told that it was a normal wound and it would just take time to heal. I’ve had several follow ups with the surgeon and was initially told to use Iodoform strips in order to speed up the healing process. I probably wasn’t packing them correctly, because it seemed to make the healing process worse. I’ve had more success with only using gauze, however it’s an area that is nearly impossible to keep covered, since it’s practically the whole perineum. It seems the wound is finally closing a bit more, but it’s just taking forever to heal. I visited the surgeon again about a week ago and he has me concerned. He said the wound should have healed by now and fears that I’ve developed a fistula. Of course, he wouldn’t really give me too many details and said that he needs to order another retrograde urethrogram to confirm. He then asked me if I’ve noticed any urine coming from the incision. I’m thinking…’of course not, or I would have been going ballistic’! He then said it’s probably nothing to worry about. I asked him what the next step would be if a fistula has developed and he said that the entire urethroplasty would need to be performed again. I really don’t want to go through with this again. I don’t think the recovery itself was unbearable, but missing work again for a month and the cost will just deflate me. Has anyone else experienced longer than usual healing times with their incision? Hopefully, I”m just worrying over nothing.October 19, 2017 at 5:26 pm #1556laceylbParticipant
I know you posted a very long time ago, but on the off chance you get notified of this response, I would love to talk with you about the stricture in your penis and the BM urethroplasty. My fiance has a penile stricture and is scheduled for a two stage surgery in about a month. We are both anxious about living with the graft for a number of months and it would be great to talk to someone who has gone through this. Thank you!October 19, 2017 at 9:23 pm #1557
Sure, I haven’t been on the site in quite a while but I would be happy to answer any questions you have.
An update from my initial posting.
Had the first stage BM procedure done and waited almost a year before second stage. During this time I had no problems. The initial time of keeping things wrapped up with antibiotic cream was a bit of a nuisance but once that was done all went fine. A bit scary to look at but no pain. Directing my pee into the toilet (even though I was sitting) took a bit of learning since it was a bit like opening a fire hydrant. After the recommended recovery period was even able to have intercourse with my wife with no problems.
The problems I had occurred after the second stage. After a year of no issues while urinating, closing things back up ended up with another blockage due to a strictured area in my penis. I was given the option to undergo another smaller urethroplasty or a perineal urethostomy. I chose the later and it has been great. I now have to sit to pee but have been problem free for 3 years. Hindsight being 20/20 I could have went that route up front but if the second stage had worked I would have been very happy with that as well. I had a lifetime of troubles and a couple of stricture spots one of which was larger, and I think with a smaller stricture the 2 stage procedure probably would have worked fine.October 19, 2017 at 9:33 pm #1558laceylbParticipant
Thank you so much for your reply and update! Here are the questions we’ve really been wondering about..
-What was your pain like during the recovery of the first surgery? How long were you taking it easy and home from work? Did you need to use any scrotal support?
-Do you remember how long before you were able to have intercourse again? What was ejaculation like? Was the sensation during sex still good with the graft?October 20, 2017 at 12:12 pm #1559
The pain actually wasn’t bad. Pictures I saw online and the thought of the surgery made me anticipate it would be bad but I was fine with just taking Advil after.
I stayed home from work for a week and returned the next week. I have a desk job as a programmer so I didn’t have to do anything very physical. I still took it easy and watched how I sat and still had a cath to deal with until the bulbar stricture repair healed. I didn’t have to use any sort of donut or other sitting aid.
I think 6 weeks was the recommended period before intercourse and by that time the graft had healed nicely. Ejaculation was unchanged with the exception of being more forceful (since it wasn’t obstructed by stricture) and the new exit point which was near the base of the penis where the opening/graft started. There was no difference in sensation at all.May 13, 2018 at 1:24 am #1757
Thanks for your story. Who was your doctor at Wake? I have an appointment there soon.
I have a penile stricture and have self cathed for years but recently it’s been gettin tougher. I am thinking I might prefer the urethrostomy instead of a 2stage procedure. I am 47 and my stricture is due to hypospadius repair as a teen.
Did the doctor give you an option of a perineal outlet or the outlet on the lower part of your penis?
How has it been with your wife? Any issues?May 13, 2018 at 3:54 pm #1761heyitsmeParticipant
If you are unsure of doctors, I highly recommend Dr. Aaron Lentz at Duke Urology in Raleigh. Urethroplasty is his specialty.May 13, 2018 at 5:16 pm #1762
Thanks for the rec.
I have an appointment with Dr. Terlecki at Wake. He seems to be well regarded in this area as well.
I do wish I could see him before early July but they said they would call if they have a cancel.
I have another appointment with a local uro before then.
May 16, 2018 at 1:31 am #1767
- This reply was modified 1 year, 10 months ago by barry.
Dr. Terlecki was my doctor and I
highly recommend him. In my case with multiple stricture points the perineal location worked best. Things work fine with the wife with the obvious change of where ejaculate comes out. The only thing that is ever a nuisance is having to use a stall in public restrooms. Not having to cath or worry about not being able to pee has been a huge weight off my shoulders. Hindsight being 20/20 I should have just gone this route originally and saved myself a couple of more trips under anesthesia.May 16, 2018 at 3:06 am #1768
That is good to hear Bill. I am considering the perineal surgery myself but I need to see dr. Terlecki first. He might think mine isn’t as severe. No idea.
How long were you in the hospital for the perineal portion? Were you out of work long? Much pain? I am 47.May 16, 2018 at 3:48 pm #1769
I was around 52 when I had it done. I was only in the hospital 1 night. I think if they keep you less than 24 hours it still qualifies as outpatient. My memory has faded a bit but I’m pretty sure I was back to work the next week. I have a desk job though and of course had to keep the Cath in until it was pulled after a week or so. As with my other procedures, the pain wasn’t an issue, just took some Advil as needed.May 16, 2018 at 4:21 pm #1770
Good to hear. Part of me just wants to do the same with a perineal urethrostomy and get this over with. My wife doesn’t seem to care, just whatever is easier for me. I am 47 but I sit 99% of the time anyway.
I am a touch nervous about future complications with one but as I understand it those are very rare unless you have previous damage to the area or you are possibly obese.
Have you heard similiar?May 17, 2018 at 3:57 pm #1771
Just finished up with my local urologist. He did a cystoscopy and was only able to get the 16Fr scope in a little bit that is where my structure happens to be.
He wants to dilate me in a few weeks since I have been on self dilation for 12 years with no real issues except in the last 3-4 weeks.
We discussed a perineal urethrostomy and he said that was possible but he hated to go that route if I could get a year or more out of another dilation.
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