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Newly diagnosed can't leave my house

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  • #16
    Re: Newly diagnosed can't leave my house

    I am so sorry you are in so much pain. I was also in terrible pain when I first flared(IC first reared it's ugly head). I am wondering if you are feeling any better now that you have had a few months of treatments. I eat a plant based diet now and I am finding that my body is doing a lot of healing overall. Still have daily IC pain but it is quite manageable. Hope you have found some pain relief.
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily
    Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

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    • #17
      Re: Newly diagnosed can't leave my house

      I have all of the above 24/7 and was diagnosed today. I hurt so badly.

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      • #18
        Re: Newly diagnosed can't leave my house

        Originally posted by Tam4 View Post
        I have all of the above 24/7 and was diagnosed today. I hurt so badly.
        to the IC Network. I'm glad you found us.

        There are several posts in this thread that should be a help to you --- I encourage you to read the entire thread.

        Sending warm healing thoughts,
        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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        • #19
          Re: Newly diagnosed can't leave my house

          I have all of the above. So sorry you are going through this. I just got diagnosed a few days ago after 2 months of symptoms.

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          • #20
            Originally posted by Okie girl View Post
            Re: Newly diagnosed can't leave my house

            Anyone have urethral, bladder and vaginal burning too?
            Yes & urgency with mild nausea & flu like symptoms but no pelvic pain... Think everyone can get varying symptoms depending on what's causing the IC

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            • #21
              This is a good thread for those who are feeling desperate. Most, if not all of us have been there. Even though the OP was awhile ago, I thought I'd chime in on diet being a key, and stress right with it. In fact I can feel a flare worsen the minute I start down a road of panic or worry. It's hard not too when you're in pain, and it doesn't mean the pain isn't real. But any way you can calm yourself and know that others like you have found a way through can help. The other is diet. It was overwhelming to me, and added to the stress, but it has been the key to my remission. And any flare now can usually be traced to too many "little infractions". Getting back to the list of least bothersome foods helps set me straight. Being pain free or pain reduced is really worth giving up vinegar and tomato sauce and coffee. You may be able to have a bit of some of those things on occasion after you are feeling better, but for now make pain relief anf stress reduction yours goal. Everything can improve after that.

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