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  • New to the Network

    I am new to posting but have been reading posts since December. I am a nurse with alot of stress in my life. Work fulltime, have a child, helping with elderly grandparents, and a husband who is a full time student. Now that I look back, I really started having symptoms years ago. Blood in my urine, multiple UTI's...etc. After many rounds of antibiotics this past year, I developed horrible symptoms in December. I was going to the bathroom 30 times a day, with constant urge and frequency and retention. After an ER visit and 3 doctors later, I was diagnosed with IC. The Urologist mostly diagnosed by exclusion criteria. I was given 3 different alpha blockers for retention and all caused my nose to completely occlude. I started the diet. I was then given muscle relaxers and started PT, which PT has helped with the retention. After trying heparin instill (which releaved me for a couple of hours only) I was on fire the next day...I had worsening symptoms and unrelenting pain and ended up in the ER once again with a different Urologist. He did a Hydro/Cysto. My volumes were good and had no glomerulations until he reached higher capacities. They kept me overnight due to the pain and let me go home the next day. I was in EXCRUCIATING pain for almost 2 weeks. I would wake up sweating with the sensation of someone stabbing a knife into my bladder. I feel a little better now and started back to work. I am now taking elmiron and pain meds as well as elavil. I just wonder is there a light at the end of the tunnel? I always feel the urge to go, a pain in my bladder that keeps me uncomfortable. I have also done yoga, TENS, and relaxation techniques.
    Diagnosed December 2010

    Philippians 4:13- I can do all things through Christ which strengtheneth me.

    John 3:16 -For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

  • #2
    Welcome to the ICN doodlebugsmom!

    Yes, for most of us there is a light at the end of the tunnel. While IC currently cannot be cured, the majority of us seem to find some degree of relief through one treatment or another and lead fairly normal lives.

    I know for me, stress can be a big trigger for symptoms and reading your post I couldn't help but think you have an awful lot on your plate! Hopefully the diet, Elmiron and Elavil will be helpful for you.

    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


    • #3
      Welcome to the ICN! So sorry you have to join us but you are in a good place for support. Vickie is right about stress and it sounds like you have plenty of that going on in your life. Sounds like you are on the right track to better days, unfortunately it does take some time. There are usually no quick fixes for IC. Take care, I hope your days get better soon.

      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        Id like to add another to the IC Network.

        It can take some time to find which treatment options work best for us --- but most of us do. I hope you feel better soon.

        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