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    HI ladies,
    I need some more stories, people really willing to let me ask the hard questions. I am having a hard time hearing from people and odn't know if they are just now living life or if they are so over it they hate the boards...but I am scared and confused and might be moving and having to find a new team to consider removal. I live in CA but might move to NC if my hubby gets a job later this month.

    I am only 40 and talked with an MD who scared me today....reality sure but I need some positives too.

    Thanks.
    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
    More than happy to share and answer questions. If you would like e-mail me at [email protected]. this way we can talk freely.
    Lynn

    Originally posted by melanie626 View Post
    HI ladies,
    I need some more stories, people really willing to let me ask the hard questions. I am having a hard time hearing from people and odn't know if they are just now living life or if they are so over it they hate the boards...but I am scared and confused and might be moving and having to find a new team to consider removal. I live in CA but might move to NC if my hubby gets a job later this month.

    I am only 40 and talked with an MD who scared me today....reality sure but I need some positives too.

    Thanks.
    IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

    Comment


    • #3
      I am sorry that the doctor scared you. Many people who have had the surgery are able to move on with their lives and no longer come here. If you have specific questions I will try to answer some of them. I do want to stress though that everyone will have a different experience because of the type of surgery they have done, different surgeons, different symptoms etc. What happens to one person may not necessarily happen to you.

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