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  • Twenty-five

    I am twenty-five and I have Interstitial Cystitis. I'm currently bleeding from my bladder due to this (not to mention the pain that I've had since before my diagnosis). I was diagnosed roughly a year ago (I don't remember exactly when).

    Throughout my life I've had bladder pain or kidney pain and thought I had yet another UTI. But one episode was especially bad and my general practitioner decided to send me off to a urologist to have things examined more closely.

    I am currently going through (another round of) bladder instillations weekly. Besides that I am taking 10/325 mg of Percocet every 3-4 hours.

    We've tried so many things. Everything from Elmiron to shoving Valium up my vag. every eight hours (my uro's arnp had heard about the latter at a conference).

    Nothing is helping.

    The other day my uro's arnp told me that I am the most difficult case she's seen in about 20 years of practice.

    And I'm twenty-five.

    I'm crying writing this, because it hurts me to know that I have so much living ahead of me. And it's very likely that this is how it will be spent. 3 months of instillations on, 3 months off. And a bottle of pills wherever I go. Always looking for a place to sit and rest. Always aware of the nearest bathroom.

    I don't know what I expect to gain by writing this . . . but I'm doing it anyway. Maybe it's just the hope that somebody will really hear me.

    So there it is. My introduction . . . sorry it wasn't more . . . personable . . . Things are hard right now.

  • #2
    Hello and Welcome, I'm sorry you're in so much pain hopefully your Uro will find a treatment plan that works for you, just know you are not in this alone and this forum is a wealth of information. Praying for you.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      I hope you find better treatments soon. Have you considered doing your own instillations --- I know it sounds challenging, but lots of us either do them or have in the past and found this route to be much easier than spending hours on medical appointments.

      I hope your tomorrow is better.

      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


      • #4
        I too am sorry you are in so much pain hopefully, you and your Uro will find a better treatment plan. We all here understand what you are going through and our hearts go out to you. I was wondering though are you sticking with the IC diet?
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5

          Thanks for the replies.

          I couldn't do my own instillations if you paid me. It's so painful. I have to focus on my b/f's eyes to get through the ones I'm getting now. They're so blue.


          • #6
            The IC diet hasn't done anything for me. We've tried eliminating all kinds of foods with no success.


            • #7
              I'm so sorry things are so hard for you right now. It's understandable.

              I never tried instillations but I know quite a few people have found relief with them.

              Lots of people here have had to try multiple forms of treatment before finding the right one (or combination of treatments) that works for them. It's a shame it can't be easier! Have you looked at this page?

              I hope you find relief soon!

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