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Searching for Ic meetings in Philadelphia area

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  • Searching for Ic meetings in Philadelphia area

    I was wondering if there were any Ic meetings in the Philadelphia area? I would love to meet up with other people in my area who has this disease. Thanks for your help.

  • #2
    Philly close to betsy ross bridge

    Hi I would love to
    yet as you know IC is unpredictable....
    I tried awhile ago to see if there was any interest but nothing came of it. If you want to try I am willing.


    • #3
      The closest one I know about is in Downingtown at Empower Physical Therapy. They meet once a month. I've wanted to go, but haven't been able to yet. The woman running them seems very nice. Her email is: [email protected]. And here's the website:
      34 years old, bladder symptoms all my life
      diagnosed with PFD and VV October 2009; IC May 2010

      Current meds:
      Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
      Other past treatments:
      IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
      Tried and didn't work:
      Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture


      • #4
        not sure about that travel

        I could maybe do it but not these days. Downingtown seems far, far away. Have a happy new year and thanks for sharing.


        • #5
          I also live in Philadelphia. I've had IC since 1987 and have never met anyone with this horrible condition.


          • #6
            Hi Philly people! I know it is a bit of a drive.....but I am speaking and doing a book signing at the Central NJ IC Support Group on October 9, 2012: Hope to see you there!

            To learn more, contact Michelle Brill at [email protected]!
            Julie Beyer, MA, RDN
            IC Dietitian, Patient Advocate, Speaker, & Author

            Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

            Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

            You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

            ........ ........

            Other IC Diet Resources:

            IC Diet Webinar
            IC Diet Website
            For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
            Free IC Diet Booklet: What Can I Eat?
            Confident Choices IC Diet Blog
            IC Diet Newsletter

            *Let's Connect!*


            • #7
              HI there. I live in Philadelphia and would to get together for a support meeting or even coffee. Let me know!
              IBS - Diagnosed in 8/2010, under control through probiotics
              IC - sudden onset 7/2012, diagnosed 9/2012 - Remission starting 3/13 - (Usually deal with 2-4 flares a year that last from a day to a week and then go away) 6/15 - Mega Flare

              Medications while I struggle with IC:
              Elavil 10mg (started 9/2012), Elmiron (started 8/2012), Hydroxine (As needed at night), Claritin , Junel FE (Birth Control) , Probiotic, Aloe Vera 6x a day, Pyridium, uribel (as needed)

              Fennel tea & Mint tea helps a lot!
              Yoga is a life saver!
              Starting Physical Therapy for pelvic floor spasms 10/12/12 - ended 12/12Streches are always useful!
              Lots of Water!