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My Story

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  • My Story

    Hello Group, my name is Tonya Jones. I was diagnosed with IC last year. It took the entire year and a half to get diagnosed. I thought I had a GYN problem. My GYN doctor told me I had a cyst on my ovary. I had the cyst drained. About a month later the pain returned. I went through CT scans, MRI's and ultrasounds of my ovaries and cervix area to no avail. I Changed GYN doctors and guess what....she started all these same tests all over again, finally she referred me to a Urologist. The Urologist knew exactly what my problem was before he order any test or procedure. The only thing that gave me immediate relief was the DMSO cocktail once a day for three weeks. I FELT LIKE A NEW WOMAN AFTER THESE THREE WEEKS. About 2 months later I had a Cystoscopy, then about a month later I had a hydrodistention and a biopsy done. This procedure gave me relief for 1 year exactly, during this time I stopped all meds.
    Elmiron 100 mg.( 1 )3X a day
    Amtriptyline 25mg. 1 at bed time
    Hydroxyzine 25 mg. 1 at bed time
    I have been having a few flairs and.. I have an appointment this week to talk about another hydrodistention

  • #2
    Thanks for sharing your story! I'm curious to know what symptoms you were experiencing for the 1 1/2 yrs prior to your IC diagnosis. Thanks!


    • #3
      My Story

      Prior to being diagnosed, my only symptom was constant pain in my pelvic area. The pain was so bad, a few times I requested my GYN perform a hysterectomy and just take everything out. I am glad she refused.

      If your GYN can't find anything ladies insist on a referral to a Urologist. I have a co-worker experiencing the same pain. She has been through all the GYN test and nothing. Her Primary Care doctor doesn't think she should see a urologist.

      I told my co-worker to insist so she can rule Urology out just as the GYN has rule out the reproductive organs.