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  • #1

    my story

    This chance to have some one understand and know what I am talking about is great. My family tries to be understanding but they really have no idea what we go through on a day to day basis. I have had bladder problems since I was 12 years old but only after 6 cyto's and a RAZ procedure did I come to the conclusion that my problem was not routine cytitis. A friend who is a r.n. recommened a doc who is a gyn but treats ic and he only had to hear my story to recognize ic, unlike some of the other postings I have read, I was relieved that someone knew what I was going through and would actually try to help me get relief. My doc is wonderful but even he is at the end of his rope I think. The longest period of relief I have Had was 3 weeks after my last dmso instilation but the procedure and the day following it are horriable for me with my pain and urgencey and frequency being worsened initialy. I seem to have almost all the "hallmarks " of ic, the ic belly, the low pelvic and back and leg pain. I go to bed at 930 each nite only to get up at 1230, 230, and 400 then I get up to get ready for work at 600. Needles to say, I am always tired and my family wants to know why. Boy, that feels good just to vent, I look forward to hearing from any of you that just need to vent or if I might could help in any other way
    GOD BLESS YOU ALL.
    melanie2
    Tags: None
  • #2
    Welcome to the IC Network. I too am glad you found us.

    I will share with you my experience with DMSO. When I first started DMSO I also experienced a lot of pain --- I almost gave it up. Now I am glad I persevered. My uro gave me pain meds to get me through those first treatments. I had a series of eight weekly instillations and am now on a monthly maintenance series.

    After the first two or three, it wasn't nearly as bad --- and I found that in between I really felt much better. Now that I'm on a monthly schedule, I am a little uncomfortable on instillation day, but the following day I feel fine. It's very important that you have lidocaine or some other surface anesthetic instilled before the DMSO.

    Sending healing hugs,
    Donna

    [This message has been edited by ICNDonna (edited 11-15-2000).]
    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

    Comment

    • #3
      I was diagnosed with IC in October 2000. I had no idea what was wrong with me but soon discovered I had entered into a living Hell but I'm finding out I am not alone. Twice a week I see a urologist and have a potent medication called an "Apell Cocktail" inserted into the bladder. It must be retained in the bladder for at least two hours. The first treatment brought immediate relief but after a couple of days, the pain and discomfort returns. I also started Elmiron but it reportedly takes three months for results. Prelief sprinkled on food or taken in pill form doesn't do much for me. I'm beginning to become very depressed. If I have to live the rest of my life in pain in misery, I'd rather be dead.

      Comment

      • #4
        For Joyce: First of all, I'd like to welcome you to the IC Network. You'll find a lot of information and support here. I encourage you to read the information in the Patient Handbook at http://www.ic-network.com/handbook/

        I know how frustrated you are feeling. It may take a while, but you will find treatments and medications that do work for you. It's important that you put yourself on the IC diet. Eliminating acids, coffee, etc., can substantially relieve IC pain.

        And if you have questions, post them. We are not physicians, but are willing to share our own experiences.

        Sending warm healing 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

        Comment

        • #5
          Joyce, I agree it is very hard to suddenly be stricken with this weird illness which no one seems to understand. However, I want to assure you that you can get some relief from a variety of treatments and that you can learn to live with it, such that it doesnt dominate your life. At first, it is totally normal to be angry and shocked... but, I have been there, and now I can honestly say that I am still enjoying life, basically doing everyday things, socializing, etc., with some discomfort, yes, but I am glad to be alive! I hope the IC community here can give you the support you need, as well as family, your doctor, etc. I believe you can find the strength you need to cope with IC. I am so very sorry that you have it, though. I try to keep up with the medical research on IC and I find that that gives me hope and some sense that I am doing everything I can to fight it. Stay in touch!

          Comment

          • #6
            it's me again,just wanted to share a little encourgement for those who are about at the end of your rope. Hang in there, if the treatment your doc is using isn't working, ask about changing to another type treatment.I really have to push myself some days to just get out of the bed, I didn't do that for 6 months and my life just about crumbled around me. Down deep somewhere, I found the gumption to start living again and even have gone back to work. Please just know that there are people out here who do care and feel free to e-mail me any time with questions or concerns, I am not a dr. but I have been dealing with this for 20+ years I have several good coping stratigies that I could share with you.
            God bless you and kep you,
            melanie2

            ------------------

            Comment

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