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  • My Story

    I was just diagnosed March of 2011 with IC....after being in pain for two years and not knowing if I would ever find relief. I was afraid to go to bed at night because of waking up in the middle of the night crying due to the horrible pain! I was tired of being told it's all in my head when I knew it wasn't! I finally found a Dr. who knew exactly what i was going through just after hearing my symptoms! It was like the biggest weight off my shoulders! He did a scope and diagnosed me with IC and I am currently taking Elmiron, which helps a lot and also following the IC diet. A lot of times I feel alone and very anxious as i try to be prepared for the next flare up which really interfers on just trying to enjoy life! I feel like I'm not living in the moment anymore! I'm so glad to finally get my story out and have someone understand exactly what I'm going through! Hoping to get lots of ideas from here!

  • #2
    Hil. You are very fortunate to find relief from elmiron so quickly! Most people must take it for 6-9 months before they even begin to see if it will help them.

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    • #3
      Hello
      Welcome to the board. I'm glad you're finding success with Elmiron and the diet. Hopefully you will continue to feel better the longer you are on both. Most patients do find that with time, diagnosis, and appropriate treatment that control of their symptoms improves a lot compared to before diagnosis. My first 18 months with symptoms before diagnosis and treatment were by far the worst time for me.
      Be sure to take steps to reduce and manage stress in your life, as most patients will name stress as the number one cause for an increase in symptoms.
      Glad you found us!

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      • #4
        I understand how it feels to finally have a diagnosis. I know my worst time with IC was the months before I was diagnosed. It's good that you are following an IC diet --- many ICers find that single step helps more than anything else.

        Sending warm hugs,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        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: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

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