2 years 8 months ago #55399 by Harley96
Replied by Harley96 on topic Neobladder
Looking for a bit of advice.
I am 21 years old and I’ve recently been having a lot of bladder problems. Very similar to interstitial cystitis although waiting on biopsy results to rule out anything more sinister. I am currently managing some of my symptoms by using an indwelling urethral catheter however the two specialists treating me are keen to try neobladder surgery.
If anyone has had the surgery or knows a lot about it, I would be interested in knowing the benefits and negatives of the surgery. As I am very young to be having major surgery like this I would also like some information about how it would affect me for the rest of my life.

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2 years 9 months ago #55362 by sara.anne
Replied by sara.anne on topic Neobladder
I do understand that IC is a very uncomfortable and not easily treatable condition. However, I still wonder if radical cystectomy is the right solution. Also, I suspect that you are female (as IC is much more common in women) and neobladders are not necessarily a good option for women; they are much more likely to be either incontinent or hypercontinent with this surgery. If you do decide on cystectomy, an Indiana pouch might be something to consider.

As for recommendations, You would need to find someone who does LOTS of these surgeries as the expertise/experience of the surgeon is a paramount factor. You should consider places that specialize in bladder cancer such as MD Anderson, Memorial Sloan Kettering, Stanford University, USC, or Johns Hopkins to mention a few.

You should also explore the doctor's knowledge/experience with intersitial cystitis.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 years 9 months ago #55361 by ICStinks
Neobladder was created by ICStinks
Hi, I have interstitial cystitis, a very painful, uncurable disease of the bladder and am considering neobladder surgery. This website caught my attention because of all the doctor recommendations. Does anyone out there have IC and had their bladder removed due to it?

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