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New Here & My Story

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  • New Here & My Story

    Hi I am new here from New Orleans. Although I am not new to IC. I am 38 years old and have been diagnosed and treated for IC for 11 years. Although as most patients my problems started as a teenager with Endometriosis. After multiple laser laps for the endometriosis and finally a hysterectomy at the age of 29. My abdominal pain and problems persisted.

    I owe a co-worker for suggesting that I go to her urologist. One day we were talking at work and I told her about the constant abdominal pain, frequent trips to urinate, pressure, burning, treated for a UTI. We all know the drill. As soon as I walked in gave my Urologist my history and symptoms she was pretty sure that I indeed had IC. After a cystohydrodistention it was confirmed and at that point it was sever with Hunner's ulcers.

    Started Elmiron, DMSO instillations, and all the other meds. Fast forward a few years and I had the interstim implanted.

    Now I am up to the EMPI therapy as needed, vaginal suppositories (baclofen, lidocaine, Valium), Heparin instillations at home.

    Last year I had a cystohydrodistention because of consistent excessive blood in my urine with each visit. At that time she found a bladder polp and removed it. This threw my IC into overdrive, that caused not only microscopic blood but large visible amounts. Where sometimes I thought I was hemorrhaging! So three weeks later back to the OR for Kenalog injections into the bladder.

    I know my story is not that much differnt from many here. For so long I just kept everything to myself because those around me have gotten tired of hearing I don't feel well. The other day in my urologist office I saw some articles from ICN and I decided to come back to the website and check it out. I had when I was first diagnosed.

    Anyway, thanks for reading. I look forward to posting and reading about people just like me.

  • #2
    to the IC Network. I know you'll find a lot of information and support here.

    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help:


    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3

      Thanks for taking the time to share inspite of the challenges you are facing. I truly believe that pain/grief/disappointment shared is pain/grief/disappointment divided. This site is full of people who are more than willing to share their experience, strength, and hope. Your post so inspired me to reach beyond my world. Once again, thanks for sharing. Have the best day you possibly can.


      • #4

        Thank you for the warm welcome.