www.incontinentsupport.org

Hi All,

I hope everyone is doing well! I thought I would share an update about me with everyone in hopes that it may be helpful to someone!

For a bit of background: I was born with a urethral valve that wasn't discovered until I was 8. I've had on-and-off incontinence, in verying levels, for most of my life. As an adult, I have a urethral stricture that has developed. I had a urethrotomy (DVIU) about 6 years ago to open up the urethra, which seemed to work fairly well, but recurrence is very common. I've had a pretty significant increase in incontinence over the last couple years, so I thought it was time to get it looked at again. Sure enough, the stricture had returned, though not significantly. The urologist (a specialist in urethral reconstruction) decided to do a DVIU again because it was small and said after the surgery that he didn't think I would need full reconstruction (urethroplasty) any time soon, which is great! Though, because the stricture wasn't as significant, he doesn't think that is the main cause of the ongoing incontinence and doesn't expect it to improve from the DVIU (it did improve last time, though didn't totally make it go away).

He had me do urodynamics and some ultrasounds over the last couple weeks. The urodynamics was conclusive that I have an underactive bladder (loss of contractility), bladder wall thickening, and some retention. None of this was a surprise, based on my history, but it is the first time it has been formally diagnosed. He has said that really the only treatment that has shown to help is Interstim or regular catheterization. He wants to wait a month or two for the urethra to fully heal before deciding on Interstim, to ensure I don't get more relief as it heals.

So, now I have to decide whether or not to pursue the Interstim. There are a lot of reasons an implant doesn't excite me, but there is strong evidence that it has helped significantly for some people and could save me from regular catheters down the road as well as help with the incontinence. If I end up having it done, I'll probably do it before the end of the year because I have already hit all my out-of-pocket maxes with insurance so my cost would be minimal.

Anyway, that's were I am now. If anyone has any thoughts or has been through it, I'd love to hear from you.

- Scott

You have one lengthy history. Although I hope that your issues will resolve without further surgical intervention, knowing that it is available if you need it must be reassuring. Good luck and keep us informed.

Hopefully, the stricture repair works for you! As strictures do have a high chance of reoccurring combining that with an underactive bladder the use of catheters (likely self-cath multiple times a day) could make the stricture issue more complicated or reoccur more often, My personal experience I have had two surgeries to repair strictures but I also have a neurogenic (overactive ) bladder my experience is my incontinence got worse after each repair but having an overactive bladder means I don't need to cath.
If I were in your shoes I would very likely pursue /consider the Interstim as catheters add a risk of infection and further damage (if done improperly)

one question I would ask the doctor is how often does the Interstim reduce the need to cath because it is likely that even with the implant you may still need to cath if the reduction is statistically high than that would be a good thing in my opinion, if the statistics say there is limited reduction in the need to cath I might not pursue it.

as I am not a doctor my advice is just a personal opinion based my experience and thinking about your position.

Good luck!

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