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Talk to Someone with a Neobladder

From our inbox: I am facing the probability of bladder removal in the coming months. I have done much research on the 2 possible means of reconstruction.

I would very much like to speak or communicate with people who have had the neobladder as I have many questions.

  1. Raising hand and raising h*ll!

    7 years a neobladder owner. Very happy with my choice. Happy to answer any and all questions. One thing you'll learn with bladder cancer - you lose a lot of inhibitions with all the poking and prodding you'll go through on this journey.

    Kind of an important note: there are very different "average outcomes" depending on male/female - or so I've heard. Make sure you get input from both sides of the XX, XY fence.

    1. I just was diagnosed 3 weeks ago and will be having neobladder surgery in 2 weeks . . . I have so many questions . . . What is recovery like? . . . How long is recovery? When can you start doing things . . . Are sex and intimacy still on the table? . . . I am so full of anxiety and dread . . .

    2. although my procedure was a little different, I can help answer some of these. You will need to take it easy at least 6-8 weeks post-op to allow the healing to take place. That's standard. If you have any complications or other health issues, it may take a bit longer. When you do get the "okay" from your surgeon to start doing things, START SLOWLY! Remember you just had major surgery and it takes time to get back to all the things you used to do.

      Sex and intimacy are still on the table. You may have some physical hurdles to work through, but there are physical therapies that can be done to help those along and you may just have to take longer to warm up to things.

      What else ya' got? 😀

      Although I hope some of these answers help ease your mind, I don't think the anxiety and dread will subside until after the surgery. I know mine didn't. I think it's just part of the process...unfortunately!

  2. I just now saw this notice. I assume you've had the procedure by now. I hope yours went as well as mine did in 2011. I don't know how to get you my contact info.

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