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Ya I have IC!!!

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  • Ya I have IC!!!

    :woohoo:

    Well I finally got a positive diagnoses today...

    I had my csyto and after six years, I was told I in fact do have IC.

    Just like my brother and my mother.

    I am so happy. Strange I guess to be happy, but I don't mind it. It is better than having cancer in my opinion which was what I was scared of.

    So now I begin my journey. I have thought I had IC for the last couple of years, but did not know for sure until today.

    The uro put me on elmiron, pyridian for burning.

    My doctor already has me on toradol for pain, and elavil 10mgs.

    I tried the diet for months and to be honest I can find no corolation with diet for myself. I went months having coffee everyday and wine on the weekends and didn't have any bladder symptoms. Then sometimes I would follow the diet strictly and have the worst flare. After I tracked it for a year I figured out that it follows my period pattern. Worse in the days before my period and during my period and then calms down after wards. I also figured out that yeast infections make it worse as well, as well as sit ups and sex in certain positions.

    But this is me, I personally do not find coffee chocolate etc give me symptoms, but I think I have fairly mild IC. I do not pee more than 10 times a day, do not get up at night to pee...and have a very good bladder capacity - 700 mls. Also, I have no problems emptying my bladder.

    All of my symptoms are pain in the lower abdomen, and urethra, vagina burning. Frequency and Urgency are not a problem for me overall.

    So anyway they did the cysto and found tiny pinpricks of bleeding on my bladder wall from my cystometregram I had yesterday. He said that test shouldn't have made my bladder bleed.

    Anyway, I went shopping last night so it didn't bother me too much and today I feel fine after my cysto, so I am thinking compared to some people I do not have it that bad.

    So what should be my plan of action now?

    Since I have had it for six years about the same level, my uro figures it won't get worse. Although he does want me to try to train my bladder so that my bladder capacity does not go down.

    So what should I be taking? Elmiron, elavin, pyridian and toradol is prescribed. Should I ask for the atarax as well? or just try the above and see.

    Thanks,

    Carolyn

  • #2
    I'm not a dr but if that is what your dr pescribed you for now... it seems like a good combination. Everyone that has Ic has different symptoms and different meds that work. It's all about trial and error. It's very frustrating at times... but we are all here to help you when you need it! "We are family " "get up everyobdy and sing" haha had to break into song for a minute. lol anyhow I would wait a few months and see how these meds are working. Elmiron takes about 6months to a year to see results. If that doesnt work try cocktails... Good luck!!!

    (((Hugs)))
    Rach
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

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    • #3
      Thanks

      My brother and my mother have/had it much worse than I do.

      My brother is still going through it, my mom went in remission in 95 and it never came back again, so that is my goal....

      I think it is attainable especially where I only have a mild case that has not progressed in six years...beat it out with elmiron...

      thanks,

      Carolyn

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      • #4
        I have to say that the time before I was diagnosed was far worse than any other time. My father had bladder cancer and his symptoms were almost identical to mine so I was totally terrified and much relieved to have a diagnosis.

        I hope you feel better very soon.

        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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        • #5
          I'm a bit terrified of cancer too. My friends say "Oh you don't have cancer so don't worry"... How can I not worry? My symptoms match cancer and IC... until the tests come back, I'm stressed. I should get answers in about 10 days. Donna is right, the waiting is the worst part. I'm glad you got your dx. I hope you will be feeling better soon.
          ~Diane
          dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

          Medical History:
          c-sections: 1988, 1991, 1997
          Viral Arthritis 1998 (Like RA, but went away!! )
          Pterygium & Dry Eyes since 2005
          Hysterectomy (Fibroids) 2006

          ~~~~~~~~~~~~~~~~~~~~~~~~~

          Me & Jerry ~ Sammy & Ryan
          ~~~~~~~~~~~~~~~~~~~~~~~~~

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          • #6
            I've never seen someone so happy to have IC! I understand why you are happy... it's nice to know (and have treatment options) after suffering... for YEARS! You are tough to put up with it that long! I am going on 6 months without a dx and I'm miserible! Well, congrats on the dx. I know nothing about IC meds (new to all this with a script for Elmiron 2 days ago). Good luck with your treatment!
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

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            • #7
              Hi & Welcome

              I think you are on a great plan of action. Are you taking an antihistamine though? I may ask for that with your list of meds.

              I also have what I consider "mild IC" although it didn't feel so mild when I was getting diagnosed.....I was pretty sure I was dying. I was only diagnosed on March 1st, but have been suffering with it since a staph bladder infection in Nov 2006. Since my diagnosis, I've been on all the meds and go in twice a week for bladder insills and have PT for PFD once a week. I am SO MUCH better. OMG the difference is unbelievable. I sit here with no pain and I just simply can't believe it!! My main complaint is pelvic pain - and I went through a bout of urethra irritation from all the catheders. I do not have urgency/frequency....thank goodness.....
              I also went on the diet strictly but didn't notice a difference. I was still in pain just eating rice and chicken. Now, I've added back vinegars, soy sauce, tomatoes, chocolate and I'm doing well. I still don't drink anything but water and blueberry leaf tea though.....

              IC is different for everyone. I am exercising again, feeling pretty close to "normal" and am headed for a remission that I hope lasts a lifetime. I will never take my health for granted again.

              I'm SO glad your mom is doing so well. That was great to hear of a 12 year remission!!! You'll get there too!

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              • #8
                Hi

                Hi,

                ya there are times it didn't feel so mild. But I must say I have never had it like some people have had it on this forum, hence I could go six years without too much of a fuss. It is more irriatating to me than painful. Thank goodness I do not have to deal with frequency and urgency. Nope mine is all ab pain and burning. Although I think I am tracking the burning down to recurrent yeast....The abdominial pain can be bad sometimes, but not too much - once every week...

                Anyway I am hoping elmiron helps...I am thinking I am probably leveled off since it has been the same for the last six years....Actually the first year was the worse...maybe I just got use to it. ha.

                Anyway, I am going to go back on the birth control pill this month after a six years absence. My periods are all fooled up, and since I took a shot of depo five years ago, I still have leaking boobies...SO I am going to try to go back on the pill this month. Hopefully this does not put me in a major flare....

                Thanks,

                Carolyn

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                • #9
                  Well, I've been on BCP for 7 years and they switched me to a new pill to make my periods continuous. A lot of people notice flare ups with their periods, so birth control helps to calm things out... but for me they wanted to stop them because that is when I have the real pain (organ exploding type pain). It's only right before I bleed, but it is painful enough I had to go to the ER twice since 07 started. Not fun. The other times I just tried to breathe through it, but lasting anywhere from 4-10 hours, I feel like It's killing me.

                  Good luck! I could deal with some mild pain each week, but that need to pee all the time, I wouldnt' wish that on my enemy (well maybe I would )
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                  [

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