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Family member with IC

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  • Family member with IC

    I have recently met 2 people with IC who have had it for years and none of us knew the other had it. I know it can be embarrassing and difficult to just talk about it all the time but I thought how sad that we could have been supporting each other all this time if any one of us would have just spoken up.

    The first time was at a family reunion and after about the 10th time leaving the table to go pee I mentioned to the lady across from me (my husband's cousin) that I had a bladder disease that was flaring up. She asked what and when I told her she said "wow. I have that too".

    The the other day I posted a pic of my newly pedicured BLUE toenails on my Facebook in honor of IC awareness when my chat box popped up. It said "yeah, I have that too". It was a friend I have known since 1994 but we no longer live in the same state so don't talk often anymore.

    I'm guessing we would all be shocked if we knew of everyone who had this horrid disease! Hopefully the IC Awareness efforts will not only help medical advances but also awareness and get the conversations going about it. So glad I put my blue toes on Facebook!!!
    Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!

    DX: IC - November 2002 after hysterectomy
    Interstim implanted March 2006 - died May 2011
    Interstim replacement June 2011
    Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
    Docs: Pain management doc, urologist, family practice

  • #2
    I found out the mother of one of my college friends has it after posting on fb for awareness.
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!


    • #3
      I found out one of my co-workers sister has it from face book as well.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily


      • #4
        This is great! I am new to this site and I too just posted the awareness on my facebook. Haven’t met someone close to me who has IC just yet but with this site I already feel so much more comfortable in speaking about my feelings and realizing I am not alone!! Great post