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  • #1

    My story

    Hi,

    I have been visiting this board and slowly getting closer to all of you. I really appreciate that this is here. Cause sometimes I feel so alone.

    My symptoms began on 12/15/2000. I remember vividly!!! Well actually I think I had symptoms before but not like what happend on that day. A sharp burning pain right in m6y lower abdomen. I had been having to get up more a night ever since I had my hysteroectomy in 1995. But thought maybe it was the on set of diabetes.
    the next day on the 16th I went to the Dr. she said I probably had a UTI, even though she said there was no bacteria. She gave me antibiotics. Well to make a long story short, I took 4 rounds of different strength antibiotics 5 different docs gave me a pelvic exam in a month!!! Then the sixth doc said "I think you have interstitial cystitis" and sent me to a urologist. He diagnsoed me right away. He startd me on Elmiron, Elavil and Hydrocone. Then I went to my naturopath. So Ithke all this medicen every day. I was doing well. Then I started experimenting with differer=ent things. I had tea. It went ok. then in one day I had three cups. Not good!!!! I had a minnie flare.

    I have had this thing for a little over two months. I don't like it. I am always laying down. I work and I am in pain. The frequency is controlled by detrol and diet but there is still that naughing pain the one that really never goes away. Its been two months and now I am starting to not see an end. I think I have been in shock and trying to make the best out of it. It is painful and very discouraging. It takes me away from my family. I am sad and scared that this will just get worse. I am gratefull that I am not in as much pain as I was before I was diagnosed, I am just sad this this is happening I suppose I have to get use to having this thing and accept that I have it on a deeper level. Thanks all of you for being here.

    ((((((((hugs)))))))))))))))
    Tags: None
  • #2
    Jean Ann, acceptance takes along time, and once we think we've got it, we find ourselves starting all over again This board saved my life. I was sooooooooooooooo angry and full of hate. Then, 2 years ago my hubby bought me my computer for Christmas in hopes of finding a site that would help me and I found the ICN.....took probably a year for that anger and rage to leave me but IT DID LEAVE.

    I've had IC all my life, I'm sure of that. But didn't begin treatment till 1985...for 10 years my uro told me I had chronic cystitis. After my hysto I had my first full blown flare and it lasted way way tooooooooooooo long. I got lucky on my 3rd uro and I am a sucessful interstim patient. I am on SS disability and I figure I don't get paid enough to feel this crappy (I also have fibromyalgia and chronic fatigue) but I do the best I can on a day to day basis....I have a WONDERFUL support system in my hubby and honestly don't know what I'd do without him holding me together sometimes.

    For me, the hardest thing was forgiving myself for being sick, and some days I still struggle with that.....BUT IT's SO IMPORTANT! We did NOT ask to be sick. We did NOT ask to be on the couch and I'm sure you are only there when you have to be.

    PLEASE be kind to yourself. Treat yourself as you would treat your best friend if she had IC. Lean on US - your IC sisters. We are here for you 24/7.....please let the ICN do for you what it did for me.

    tons of hugs teri
    teri
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

    Comment

    • #3
      Welcome to the IC Network family. As Teri said, you will find an amazing amount of support here. Have you found the Patient Handbook? It's at http://www.ic-network.com/handbook/

      My IC was diagnosed 26 years ago and what I would like you to know is that there is life with IC. I have become so accustomed to having it that if I were ever to "not" feel my bladder it would feel strange.

      It took me some time to find which treatments and medications work best for me, but I feel good most of the time --- and I do live a normal life. I can go shopping, walk the beach --- most of the things I did before IC.

      And if you have questions, this is a good place to get answers. We aren't physicians, but will share our own personal experiences.

      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

      Comment

      • #4
        Hi Teri and Donna;

        You two have had this thing for a long time. So has it got worse over time.

        I am following the diet, that was a life saver!!! I take so much medicaton it boogles my mind. I think keeping a positive attitude really helps. I noticed when I started going down emotionally I forgot my meds, I ate things I shouldn't. I have to remember it is one day at a time. I still work. Actually I work full time and have my own business. I seem to do OK. I suppose its all the meds. I am hopeful that I will get to keep this thing under control. Like I said I think its all attitude.

        Love you guys glad your here for us new bees.
        (((((((((((((HUGS)))))))))))))))))))))

        Comment

        • #5
          My IC has not worsened. In fact, I think I am better than at first because I have learned how to deal with it. I do have some pretty bad flares, but all in all, I think I do very well most of the time.

          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

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