If you suffer from IC or love someone who does, you know how frustrating it is, from managing diet to managing your life.

When my symptoms began, my career and marriage fell apart. The last thing I wanted to do was attend a support group because I was so sick of thinking and talking about this disease. A kind acquaintance introduced me to a woman with IC and from our first conversation I felt a weight lift. She helped me navigate through the morass of information, but more important, she made me feel like an optimistic person again. I want to help others the way she helped me.

The purpose of this group is to lift the spirits of one another and exchange information about this confusing condition.

During graduate school I learned how to understand and parse out clinical trial data, a skill that has proved invaluable in wrapping my head around IC research. I would love to bounce my discoveries and thoughts off of other people grappling with the same problem.

We will meet in a spectacularly beautiful, tranquil, and relaxing wellness spa of which I am the director. It will of course be of no cost to you.

Please consider joining and throwing out some ideas.

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What's new

  • New Member
    Amy Amy joined
    Tuesday at 12:02 PM
    Amy
    "Hi Everyone, Just moved to the Lansdale area and looking to find a good Urologist who deals with Interstitial Cystitis. Any suggestions? It would also be nice to find other women and support one another."
  • New Member
    Latisha williams Latisha williams joined
    December 30, 2011 at 2:57 AM
  • New Member
    ScottyDawg ScottyDawg joined
    December 2, 2011 at 9:56 PM
    ScottyDawg
    "My wife suffers from IC, PFD & Vulvodynia. She is always in pain. She has been to many doctors and none of them have done anything to help her. I will be passing on info to her so she can join. She has an IC blog and is active in IC Awareness."
  • New Member
    Renata Renata joined
    October 25, 2011 at 9:55 AM
    Renata
    "Hello, I live in Northeast Philadelphia. My name is Renata and I am 23 years old."
  • New Member
    Erin Smith Erin Smith joined
    August 31, 2011 at 11:48 PM
  • New Member
    Janelle Driver Janelle Driver joined
    July 8, 2011 at 2:13 PM
    Janelle Driver
    "Diagnosed with IC and VV in August 2009. This sucks! Need to find support for both myself and my husband."
  • New Discussion
    Francesca Leigh Koehn Francesca Leigh Koehn started Where is EVERYBODY???
    June 15, 2011 at 2:37 AM
    Francesca Leigh Koehn

    "I'm wondering who else is out there? I see there's 12 of us, but some haven't been here in months? Is this just another site that was made & already forgotten about? I would really like to see this site become a hit...."

    Read more…

  • New Member
    Bridget Wallin Bridget Wallin joined
    May 31, 2011 at 1:10 AM
    Bridget Wallin
    "Hi my name is Bridget Wallin I am the sister of Francesca Leigh Koehn. I would love to hear more about this disease and what my loving sister has to go through every day of her life and others with this disease!! I hope to hear some stories..."
  • New Member
    Elizabeth Palmer Elizabeth Palmer joined
    May 28, 2011 at 11:23 AM
  • Group Review
    Francesca Leigh Koehn Francesca Leigh Koehn wrote a group review
    May 24, 2011 at 12:41 PM
    Francesca Leigh Koehn
    "I already like the group! There isn't much support out there for this disease & it's taken this long for me to find even online support! I hope this site will bring others who also feel alone & struggle with this as I do.…"
 
Interstitial Cystitis Sucks Club http://photos2.meetupstatic.com/photos/event/1/7/8/5/global_19746021.jpeg
Founded Nov 20, 2010
20101120

Namaste Wellness Spa at St. Mary's

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