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My IC story

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  • bellbottom_blues
    replied
    I hope someday to get a diagnosis of IC so I can prove to my family that I have it.

    Leave a comment:


  • TAverill
    replied
    Dear Carolyn:

    Hiya [img]smile.gif[/img]

    Just thought I'd mention that I happened to be reading Dr. Moldwyn's book, The Interstitial Survival Guide, today. In it he said that the diagnosis criteria you mentioned was set up by the NIDDK <National Institutes for Diabetes, Digestive and Kidney Diseases, a branch of the NIH, National Institutes for Health>. BUT the intention of the NIDDK diagnosis criteria was ONLY to provide a standard for all researchers when admitting patients into research study programs, NOT a standard for diagnosis of IC in general <ie by doctors treating patients>. This standard was devised to make sure that positive research study results <ie therapy X is working> were comparable study-to-study. For example, if study A used 'mild' IC cases and reported great success and study B used 'severe' IC cases and reported moderate success, it would be conceivably possible that study B actually was more successful that study A due to the wide range of severity of IC cases out there.

    This means you can be diagnosed with IC but not fit the criteria <which pretty well define more severe IC cases> for research study admission.

    OK, was that clear as mud? [img]confused.gif[/img] ...Not sure if I expressed that clearly so if it didn't make sense, please post and I'll try to rephrase it or quote it from the book.

    Regards,
    Terri
    <img src="graemlins/blink.gif" border="0" alt="[blink]" />

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  • CarolynSW
    replied
    Researchers say that you can have IC and NOT have the pinpoint hemorrhages. I think there is a wide spectrum of symptoms that all fall under the label of IC. Who knows, maybe someday they'll discover that there are 5 or 6 different syndromes that are all called IC right now, that have different causes and a different prognosis.

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  • NB
    replied
    So people with visible bladder inflammation have IC?

    And someone who pees alot with no pain and no visible symptoms have over-active bladder?

    I cannot find a good answer in any books, is this the case?

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  • Jazzy Baby
    replied
    I asked my Uro about IC being the same as overactive bladder, and he said that they are totall different. With IC, we have pin point hemerages, and bleeding, and all that stuff. With overactive bladder, the bladder just spasms. There is no pain, people with it dont have to pee 50 times a day 1 week, and then the next go into a retention stage. He said its nothing compared to IC.

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  • NB
    replied
    I see more phamplets about over-active bladder at doctors offices, and even commercials on TV advertising Detrol. I don't know if over-active bladder and IC are two separate things for sure but alot of women are experiencing IC are told they just have an over-active bladder. It is a shame that IC isn't that well known. If it weren't for the internet, i'd only know a little about IC from only a few books i could find with the information in it.
    Your problems came back after a pap smear after feeling good for a year? Ahhhhhh! That has to be sooo frustrating. This just tells you how much we or any doctors DON'T know about IC. I hope you find some relief
    <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

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  • Cawaggi
    replied
    I think your story shows something I've read (or heard) about IC: that there are many people out there with IC, but it's just not diagnosed. I guess these are the milder cases or the ones who just don't go through the motions to be diagnosed. You said you had never been formally diagosed and that you wish your family would believe you. Have you ever thought about pursuing a definitive diagnosis? I think it is hard for others to understand because it is not a well known condition. But support and understanding is a huge help to me. This is a nice place to visit for understanding, but maybe you could also try to educate your family on IC... but I bet you've already tried that, huh?

    Leave a comment:


  • bellbottom_blues
    started a topic My IC story

    My IC story

    I began having some trouble urinating when I was about 15 years old. I would always come and go. I didn't know about IC or not and I just thought I had a shy bladder because I could void at home but I had some trouble at school and when I was out in public. On July 1, 1999 my symptoms got worse and they progressed. At first I thought I had an infection but all the urine tests I had came back negative. I began trying to do research on IC but it wasn't easy and it took me a long time to find anything on this disease. I found I have a lot of the same symptoms of IC. I've never been diagnosed with this horrible disease but I know I have it from my symptoms. I had my urethra stretched last year which helped me a great deal for about one year. After my annual pap smear in March all my symptoms came back. I wish my family would believe me about the IC. I believe I may have had this disease for 16 years and didn't know it until 3 years ago.
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