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  • Judith56
    I agree with Donna and try EVERYTHING available. I do know hydros have helped many people. Is removal something that your uro has discussed with you? When I had mine removed in 1986 everything had been tried including things such as hypnosis that was available at the time. I can certainly understand your feelings, but do exhaust all that is out there.
    I had my bladder and urethra removed at the same time, but some surgeons choose to leave the urethra or the bladder or both in and just do a diversion. If that is the case it is not uncommon to go back later and have them removed.

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  • ICNDonna
    If you have never had a hydrodistention, I think you should consider that before looking at bladder removal. I know hydros have given me a life for my 36 years with IC.

    Warm hugs,

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  • melanie626
    started a topic Thoughts


    I am looking for support from people who have "tried it all"----as I am one of those people. I was just reading the AUA 2010 guidelines and oh I am in level 5 working toward level 6.

    In all, to many years of my IC not being treated---ive probably had since a child, first mentioned at 15, not treated until 31 and bad bad bad since about 34. The ONLY things I have not done are cyclosporin, botox and hydrodistension with capsacian.

    My question is what surgery is commenly performed with the removal of all the parts? I do have PFD and urethral spasms and I would want it all OUT.

    Anyone with any similiar experience?

    I am almost 40, my youngest child is less then 6 mo old....I am killing myself to try to live life and lose weight and get in shape all around my bladder. I feel like I am missing out on so much. I am fighter, I take a ton of meds, I go to 2 PT's a week, I spent 210 a session for pelvic PT and I have been going for almost 5 years!

    When do you say...enough?

    Thanks ladies.....I am not asking for a yeah/neight, jsut for peoples experiences esp if similiar. If you prefer to PM me that would be lovely.