Running out of options

[fb98]

I am 21 and have been living with strictures since since a sporting accident when I was 13. I had a urethroplasty at 14, but when that and two subsequent urethrotomy failed I have been self-dilating since 2009 on a weekly basis. While this is managable, I have sought ways to improve my health; yoga, acupuncture, running, change in diet, abstaining from caffeine and alcohol e.t.c I have since realised that repeated dilations are only worsening my condition and have probably done more harm than good in the long run.

I am now considering another urethroplasty, but am fearful not only that it will not be successful but also of the other risks involved (fistulas, ED, e.t.c)

I know the success rate is high for the urethroplasty procedure (various internet sources quote anything from 75-92%) but I would like to hear some personal experiences/ success stories. I am well aware of the nature of the operation and the pain that comes in the following days, weeks and sometimes months, but if anyone has any stories that might make me feel more optimistic about the outcome please let me know.

Thanks

Fred

• This topic was modified 9 years, 6 months ago by fb98.

[neil]

Hey Fred,

I may have a stricture, as I have a lot of the symptoms, and I feel that, although I have not had any procedures thus far I can offer up some wisdom. Back in May I had a catheter inserted into me under false pretenses. Needless to say the procedure was not performed correctly and the Doctor covered his tracks by lying on the discharge paperwork. I believe that May have caused the pain I’m experiencing now. With that being said I’m about to be 34 and I’m scared. I’ve done plenty of research on this and I’ve compiled a list of Doctors who specialize in this surgery. Depending on where you live I can direct you to the nearest Doctor who specializes in these surgeries. I’m very sorry about your situation. I admire your strength for abstaining from alcohol and coffee. I have been doing that same thing, too. It seems to help a little. You are still young so that is a positive. I believe seeing the right Surgeon can help you beat this. The two best I’ve heard of in the country are located in Detroit, MI, and Irvine, CA. If you are nowhere near those areas I can try to look further for you.

[Chris]

Hey Fred,
I hope all is well with you. I am going in for my 4 month follow up. I will let you know more once I get back from the appt.
Take care,
c

[fb98]

Hi Chris and others

I found the a UK expert who takes referrals from all over the country and 2 weeks ago I had my operation as well. I was glad to discover that the route of my problem was not multiple but a single stricture resulting in fact from a badly done hypospadias repair as a young child. My consultant proposed simply a re-do of the repair as the solution to all my problems. This entailed a two-stage operation- the first being the main surgery and the second more of a cosmetic operation. After the operation I remained in hospital for two nights on a catheter, but was hugely relieved when I was told I would not need one to go home with (one of the benefits of an external rather than internal stricture). After a week of bed-rest I went back to have my stiches removed 2 days ago and whilst I still have to refrain from sex and sporting activities for another month, I am able to otherwise return to normal activity.

Having been through a number of unsuccessful and rather painful operations at childhood I was so dreading another surgery to the extent that my life with no solutions became very depressing. Having taken the plunge and sought out a real specialist professional I have, as of yet no regrets. Obviously there was pain, as expected, but it was so much worse in my head and 10 days of varying degress of pain (4-8 on my scale) is so much better than a lifetime of discomfort on a 3-5 scale.

While the flow is strong now, the real test comes after the second operation when I am effectively ‘put back together again’. For this I have to wait 2-3 months for everything to settle down. But I am confident in my consultant who performs over 100 of these operations a year.

I have noticed that most of the people on this forum are from the states, but if there is anyone reading from the UK I can recommend Mr. Paul Anderson in Dudley, Birmingham as the most specialised professional urologist of the 10+ I have seen in my lifetime.

F

[Chris]

Hey Fred,
Wishing all the best to you.
Please keep in touch.
c

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