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Any Winnipegers Suffering with I.C.?

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  • Any Winnipegers Suffering with I.C.?

    I'd like to know if there are any people in Winnipeg, Manitoba who are currently suffering with interstitial cystitis?

  • #2
    Re: Any Winnipegers Suffering with I.C.?

    I;m from sask. not diagnosed yet but i think i have it

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    • #3
      Re: Any Winnipegers Suffering with I.C.?

      gman, I wish you best of luck finding a urologist in Saskatchewan who's quite familiar with the disease. Compounding the challenges it seems is the fact that few people have even heard of it. It's becoming more prevalent every day, however.
      There is an excellent doctor in Edmonton who specializes in interstitial cystitis, as well. I know of him because he's only one of a few urologists in Canada who inserts the neurostimulator implant. (a neuromodulating device that scrambles pain signals up the spine to the brain & I've had one for 10 yrs. now) I hope you get a diagnosis, one way or another, soon. Hershey

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      • #4
        Re: Any Winnipegers Suffering with I.C.?

        Canada can certainly be challenging to find doctors who are versed in IC. That said, the chairman of the Canadian Urology Association this year is their lead IC doctor, J. Curtis Nickel who practices at Queens Hospital in Toronto! We're hoping that with his influence, more and more doctors will be trained to diagnose and treat IC ... as well as physical therapists too!

        You are not alone!

        Jill
        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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        • #5
          Re: Any Winnipegers Suffering with I.C.?

          Hi, Jill. Thank you very much for the input.
          It was Dr. Nickel who first diagnosed me with interstitial cystitis in 2003/04 at the Kingston General Hospital. I was his patient until moving from Ontario to Winnipeg, Manitoba, and continued participating in his research, in 2008. I have some interesting information on Dr. Nickel, although I'm unsure if it would be of any value to you. If so, this forum is not the place to provide it, without running it by you first.

          Coincidentally, I am flying to Toronto for a post-op appointment with Dr. M. Hassouna, in exactly four hours. Finally, after ten years of utilizing the Interstim neuromodulating implant, the battery gave out and I needed the entire unit replaced. It was done last October. The implant provides very minimal help with the pain, however, as you well know, every little bit helps!

          Jill, I hope you are doing very well, and have fully recovered from the surgery you had quite some time ago.

          I've a lot to contribute, and even more questions to ask. I'm primary caregiver for my 103 year old mother, my mentally handicapped, older sister, and my husband, who has been laid up with a broken back for 18 months. Last year, besides the surgery to have the implant replaced, I had two surgeries for multiple kidney stones. Besides all this, having a major fall and a long recovery from a lung infection and subsequent pneumonia, I've been out of commission for the last two years.
          And, after being on Lyrica (pregabalin) since 2005, it's serious side effects finally forced me to stop taking it. That in itself has been quite the process, and education!

          I hope we can keep in touch. You have always been so helpful to me, and a true angel for us all! Thank you so much, Jill. You are an amazing hero!
          With love and best wishes, Hershey

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          • #6
            Re: Any Winnipegers Suffering with I.C.?

            me... in Stonewall

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