September 16, 2018 at 10:24 pm #1850Adam dakakParticipant
To make a long story short I was operated about 10 years ago at 24 years of age. 10cm stricture within the penis. However 2 other stricutres occured since,one in the bulbar region the other about an inch away from the tip. Last year we operated on the bulbar stricture using a buccal graft.
I am so frustrated that I too am considering perineal urethrostomy and be done with it. I only found out about this type of intervention after my second surgery. If you would be kind enough to answer me the following questions:
The ejaculation from the new opening does it create a mess?
Have you had any uti’s seeing that the opening is so close to the anus?
Has flow decreased since? How many ml per second?
I have seen a few methods including the “7” flap technique, do you know what method he used.
Is this a life time fix?
And finally did he cap off the part of the urethra so that no urine or semen can pass the opening and just stay your penile urethra.
I know its a lot of questions but I have had so many side effects from the 2 previous surgeries that I just want to move on with my life. Thank you so much.
September 18, 2018 at 10:37 am #1858
- This reply was modified 5 years, 5 months ago by Adam dakak.
Here are my answers to your questions.
The ejaculation is messier than before, but typically just between my thighs and really not that bad. I will often keep my underwear on & just pulled down some from my waist to catch it. No big deal in my mind.
Never had a UTI since the procedure and I am sure my wiping technique is not always the recommended approach.
Flow has been consistent since the surgery at around 32ml/sec (way, way better than I ever had before).
I am not sure of the exact method used, but it is supposed to be a lifetime fix. Plan is to have 5 followups at one year intervals and then be done.
There was nothing done to block the flow into the penile urethra, but this has been a non-issue as well. Occasionally I may have a drop of urine come from the tip but it has not been a problem at all.
Hope this helps and good luck. I would have done it years earlier if I had known it was an option (especially after knowing how it turned out).September 11, 2019 at 2:56 pm #1987Adam dakakParticipant
Hi billm. Im taking a chance knowing its been a while. I am now scheduled for my pereneal uresthrostomy oct 23rd. Are you still satisfied having taken that route. Thank youOctober 25, 2022 at 5:25 pm #4902
How are you doing now?October 25, 2022 at 5:26 pm #4903
How did yours turn out Adam?October 25, 2022 at 6:51 pm #4906
I see where my last update was 4 yrs ago and I have never had a problem (knock on wood). I go back to the urologist next month for a flow rate check ( first since before the pandemic) but that still seems as good as it was the last follow up. I have never regretted having it done. The only annoyance I have are those sometimes when if I could just use a urinal I wouldn’t have to wait for a toilet stall to open up.October 26, 2022 at 12:58 am #4907
Thanks for the update. That is great. Glad you are doing so well and that this solution worked for you.
I’ve also noticed a number of men will get the 1st stage of the 2 stage procedure and won’t go through with the 2nd stage because they are happy and don’t want to risk it.
Did your doctor mention that this long term success rate of your procedure is very high? it seems to be quite high from what I read.
I am preparing to undergo the 1st of 2 stages with Dr. Gelman at UCI Irvine. Flew across the country to visit him a few weeks ago and he placed a suprapaubic catheter in me and wants me to use it for 3 months until early January so my urethra can “rest” and any stricture can fully develop before he operates.
His success rates with buccal grafts in 2 stage procedures are 90%+ but I am still nervous because someone born with hypospadias, I don’t have the best native tissues. Thankfully, my stricture appears to be pretty short from what I can tell. It’s located between mid shaft (my original opening as a child) and where I urinate from just under the glans (where they repaired me and extended my original opening).November 10, 2022 at 3:04 pm #4908
I would be interested to know what your doctor (Terlecki?) says about long term success of your perineal urethrostomy.
What percentage does he have to revise. From everything I read, the % is pretty small but it does occur. I wonder if most of his patients with one ever have to have any revision, or if it’s just a small %.November 15, 2022 at 1:40 pm #4909
I just happened to have a follow-up appt. with Dr. T on Friday. I have had no problems now for 7+ years.
Doc said that at this point I probably won’t have any other problems related to the urethrostomy. I asked him about the general success rate and he said it is typically very high but it is very important that the urologist perform the procedure using a side-to-side anastomosis technique (vs some other approach that many urologist may use as it is simpler? but has a higher rate of the opening contracting over time).November 25, 2022 at 10:38 pm #4910
That’s great news that after this much time it’s going well with no issues. The success rates do appear to be quite high.
I am almost 40 days wearing my suprapubic catheter with the 1st stage of my urethroplasty scheduled for the first week of January. (Doctor requires “urethral rest” for 3 months so the stricture can fully form- if it’s going to- before surgery).
Not much fun but hasn’t been terrible either. You sort of get somewhat use to it even though at times it’s uncomfortable. I’m able to drive and still run errands and go out to eat. Thankfully, 80% of my work is from home.January 7, 2023 at 1:43 am #4914
Hi Bill- here is an update for you on my situation. I wrote this for a few guys with similar issues so I am pasting it here too. Wondered your thoughts
I saw Dr. Joel Gelman today.
Reminder: I’ve had the suprapubic catheter since October 15th to let my urethra “rest” in so Dr. Gelman could perform another urethrogram and assess my stricture. I had self cathed every day for about 15 years (only inserting a catheter about 1/5 inches into my urethra to keep it open).
Anyway- he removed my suprapubic tube and placed a flexible scope through the opening into my bladder and went into my urethra to see how it looked. I can tell you that was quite uncomfortable but only lasted for about minute.
He then put the dye into my penis and that was also pretty uncomfortable but took another x-ray and the stricture really hadn’t changed since her performed a urethrogram on October 14th. It’s about 1 cm at most and is toward the upper part of my penis – not far from my opening which is just under the glans in my case.
So he proposed a 2 stage procedure (with the 1st stage starting tomorrow) – or – he said he could go down below the narrowing and create a new opening there- which would be about half way down my shaft- and it would be outpatient tomorrow- and I’d urinate from that new opening. He says my urethra in that area is plenty wide enough for me to not have any issues in that area.
That is about the same area as my original opening when I was born (half way down my shaft)- that was patched with several surgeries as a kid- and 1 as a teen because a fistula kept opening there when they move my opening to just under my glans.
of course I had a lot of questions because my wife and I flew across the United States yesterday from South Carolina anticipating the 1st stage of a 2 stage procedure. So we asked our questions about any issues with sex (no)- any issues with doctors accessing my bladder from the new opening in the future if I needed any medical treatment for bladder issues or prostate issues, etc- (he said no- would be no problem).
I asked if he did this would I have any issues with it narrowing or closing up in the future- he said I should have no issues with it. He also mentioned this would not prevent me from deciding to go ahead with the 2 stage procedure in the future if I wanted.
He said the only issue is that this will obviously cause me to have some spraying when I urinate and would be harder to stand up but he said I might be able to make it work since the opening would still be on my penis after I practiced with it and got use to it. I told him I’ve been sitting 95% of the time for 30 years anyway so this was not a big deal to me compared to being able to void comfortably. Plus, I’ve always sprayed some anyway so some more wouldn’t be a problem.
He said he wouldn’t recommend this as a good option if I was 22 and single or deeply concerned about how my penis looks. But since I am 52 and I don’t really have any real concerns about how my penis would look, that this might be the easiest and best option. He said the procedure would last an hour or maybe less.
So I talked it over with my wife and we decided on this option instead of the 1st of the 2 stage procedure. So this will happen Saturday morning.
He said I could leave later in the day and I could fly home in a few days if I wanted. Much cheaper, and no reason to return for a 2nd stage procedure.
So- I hope I am making the right decision but this sounds like the right choice for me. I don’t mind my opening not being near the tip since I’ve never had an opening at the tip anyway. This will be just lower on my shaft (which isn’t that long anyway- ha).
So- anyway- He called it an Extended Meatotomy. I know it’s not the typical meatotomy – but the same general idea applies. I hope I am making the right decision. I was dreading the 2 stage procedure and all that was involved in that.January 17, 2023 at 11:48 pm #4915
I am now back home with my new opening. Things have been going fine but I am having a problem mentally.
Every time I use the bathroom I am thinking it’s slowing down and not coming out as fast. I’m second guessing everything all the time and have no trust in it. It’s wearing me out mentally.
I am now searching to purchase a uroflowmeter where I can measure my own urine output. They are over $1,000 but I really don’t know what else to do. I can’t be going to my doctor every few days for a test.
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