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    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.

    I am blessed to have an Indiana Pouch now
    IC since childhood, finally diagnosed at 31 yo
    PFD/Pelvic Pain,SI joint and LBP
    Low Back Pain s/p spinal fusion at 19 with more nastiness in back
    Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
    Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
    Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
    Hysterectomy 2/3/12 w one ovary removed
    Dry Eyes
    L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
    Still have issues, still take meds.

    I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
    Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

  • #2
    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,
    Stay safe

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      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.