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  • #1

    Hello!

    Hello everyone! My name is Stephanie. I am 21 and a mother of 2. I was diagnosed with IC last year right after I had my first son. Since then I've been on Elmiron 3x a day. (Which has caused me to lose half of my hair) I've undergone 3 surgeries. I'm on pain medication and have to follow a strict diet. I'm very diet sensitive. I have to wear a pad daily as I leak constantly...I've been in physical therapy for 6 months. I find out this week if part or all of my bladder is to be removed. I just wanted to post this because this is the very first time since finding out I had this that I have a place I can post it and be understood. I've never had anyone to tell or talk to about my IC and I am so grateful to have found this site and forum
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  • #2
    to the IC Network family. I'm so sorry you're having such a difficult time. The 2009 IC/PBS Food List at the link in my signature below may help with your diet. My IC was diagnosed back in 1975 --- 36 years ago this month --- and I find the list very helpful.

    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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    • #3
      Hello Steph

      Sorry you are here, but welcome. There are threads about bladder removal and surgeries on this site. Scroll down a bit and you will find them. Really sorry, you are so young. Make sure you get appropriate medical advice, and never be afraid of asking for second and third opinions. Let us know what happens please. Jill, wife of Bob

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      • #4
        Hi! So glad that you found us. I'm so sorry you are suffering so much at such a young age. And with babies too. I will keep you in my prayers!

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        • #5
          Thank you all so much It's been very difficult but my babies help keep me going! I'm trying to find a specialist or two to get different opinions just to be sure. I find out tomorrow what my current doctor wants done I will definitely post tomorrow after I find out!

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          • #6
            The good news : No bladder removal just yet....
            The bad news:
            Therapy 5x a week and bladder distention at least once a month.

            I have until March to stop leaking and for the pain to go away otherwise I'll be using a catheter for 6 months and if i STILL have problems then I have to have my bladder completely removed

            I'm hopin for the best

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            • #7
              I decided I would give you another welcome as well. I am a male, by the way. You were right that it is a place where we can understand. We do know many people don't understand. I must figure you like to go hunting, but I don't know how well that works with IC. Regardless, I don't see many IC'ers posting about leaking.(which most don't do) Geez! That would add more frustration for me. I was diagnosed back in 1997 while it was still called a womens disease. OK. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I did not know there was a place in California called Willows, but I don't even know all the places in Georgia. Yep! Oh, well!

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              • #8
                girlshunttoo: I'm hoping for the best for you too!! Hope this new treatment works & you feel better soon.

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