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Moms with IC/Pain

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  • Moms with IC/Pain

    I am fellow IC'er and I am hoping to write a book on moms with chronic pain and how they deal/stories/etc. IF you can help me, please let me know.


    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
    I am a mother of two wonderful boys Chris 6 and Sam 2. I was diagnosed earlier this year but have struggled for a very long time with no diagnoses and no answers. My pain and constant (what they thought were) UTI's have made my life difficult and sometimes it takes all of my strength to get up in the morning. Still I like to think of myself as a survivor and would love to share my story (however it is a long one). Constant bathroom trips with a toddler and a six year old are difficult to say the least but my children are well behaved (for the most part) and understand as much as their age allows. I am so blessed to have a husband who loves me and children that are healthy and bright. However some days I wish I could stay in bed and wallow in my pain but my children come first. I would love to know how other mothers and wives deal with this lifestyle (sex life-nonexistent, bathroom breaks all the time, and almost constant pain) but for the most part I think I have a pretty blessed life.

    Take: elmiron 2twice a day
    Cymbalta once a day
    Prosed ds as needed
    Lydocaine gel for sex
    Tramadol as needed
    Oxycodone as needed
    Orthro Evra Patch constantly because my period makes me flare

    Diagnosed with severe IC April 2011

    Suffered for 8 years without a diagnoses
    I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.[/QUOTE]