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Post NeoBladder Surgery

debarel1960's picture
Posts: 1
Joined: Mar 2017


I'm a new member here and I'm hoping to find other other women primarily but interested in hearing from men too who have a neobladder and are willing to share their post surgery experiences with me here.

I am currently 56 years old and was diagnoised with bladder cancer in March 2016.  I had chemotherapy followed by surgery.  I am cancer free, which is the silver lining, but I have issues with severe incontenence. My doctor is awesome and has told me that it could take 12 to 18 months to retrain my muscles and gain control of my new bladder.  I'm very frustrated as I write this tonight because I had surgery in September 2016 and have very little success with control.  I'm looking for suggestions.  I've been going to pelvic floor therapy for months now and still I have very little, and some days, no control.  I use depends and pads and still wet my cloths at times.  I use the restroom about every 30 minutes (sometimes less, sometimes more) and being back to work makes it very difficult.  I'm constantly worried that I will wet myself in front of my colleagues and although I have leaked through my cloths at work, I don't believe anyone has noticed.  I'm quite paranoid and even the thought of having an "accident" in front of people is embarrasing.  I have almost no control and I'm being told it's the involuntary muscles that are not responding.

I'm very interested in connecting and sharing with other people who have a neobladder and hearing about their experiences.  


TMCF's picture
Posts: 1
Joined: Jul 2018

Hi Deb-


I just joined the site and your post was teh first one I went to, as I am getting ready to have my cystectomy. I am trying to decide on teh Neo Bladder or the Indiana pouch, and was hoping to get read about some outcomes long term. Did your incontinence ever go away?

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