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MY STORY, 7 YEARS W/ IC & THE DARK AGES.

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  • MelanieJ
    replied
    Hi Tom.
    I'm sorry to hear about your diagnosis. I suspect that you are just the beginning of a surge of men who are going to be correctly diagnosed (after years of misdiagnoses) with IC. I'm very happy to hear you have a good urologist - that makes all the difference in the world! That, and arming yourself with knowledge on the disease and various treatments. I've been on Elmiron for almost 3 years now and am doing great! Most days, I have little to no symptoms, which is a far cry from my early days with IC. I hope that it helps you too.

    Keep us posted on your progress, okay?
    Melanie J.

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  • Cawaggi
    replied
    Hi, and welcome again. I like Donna's idea of writing to your previous doctors and letting them know your IC diagnosis. It's unreal to have to go to 6 doctors to get correctly diagnosed. Give them a heads up so this doesn't happen to someone else! I hope your treatment is working for you.

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  • ICNDonna
    replied
    Welcome to the IC Network family. I'm very sorry that you have IC, but now at least you know --- and you have already begun treatments. I hope you will be one of the lucky ones who are helped substantially by elmiron. It takes up to six months or more to be effective, but for some it works very well.

    Have you considered writing to the other doctors who cared for you? A simple, "You diagnosed me with (diagnosis). I have now been diagnosed with interstitial cystitis." It might make those docs a little more aware that they need to consider an IC diagnosis in men.

    You'll want to read the Patient Handbook on this site. The link is on the Browse Our Site pull-down menu at the top of this page.

    And if you have questions, feel free to post them. We aren't physicians, but are willing to share our own personal experiences.

    Sending healing thoughts,
    Donna

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  • TRIPPERJOHN
    started a topic MY STORY, 7 YEARS W/ IC & THE DARK AGES.

    MY STORY, 7 YEARS W/ IC & THE DARK AGES.

    HELLO EVERYBODY, I AM A NEWBEE, SO PLEASE BE PATIENT. I WAS FINALLY DIAGNOSED W/ IC IN JAN. 2002, AFTER FINALLY FINDING A WONDERFUL UROLOGIST.

    AFTER GOING TO SEVERAL OTHER DOCTORS, MOST OF WHOM DIDN'T KNOW WHAT IC WAS, OR DIDN'T BELIVE IN IT, I GOT LUCKY.!!

    BEING MALE, THE FIRST THING MY PREVIOUS DOCS DID WAS PUT ME ON ANTIBIOTICS FOR UT INFECTIONS, WHICH OF COURSE DIDN'T WORK. THEN IT WAS DECIDED THAT I HAD PROSTRATE PROBLEMS, AND SURGERY WAS PREFORMED TO REMOVE TISSUES AROUND IT, ONLY TO FIND IT WASN'T ENLARGED. OF COURSE THE SYMTOMS QUICKLY RETURNED. FINALLY, AFTER GETTING A FOURTH, FIFTH AND SIXTH OPINION. I FOUND AN OPEN- MINDED UROLOGIST NAME DR. WILLIAM KERFOOT, WHO AFTER ALL THE ROUTINE EXAMS, DIDN'T GIVE UP, AND ORDERED A FULL BLADDER WORK UP, (AGAINST MY HMO'S APPROVAL), AND FOUND ONE BAD CASE OF I.C.

    I DON'T MEAN TO SOUND SO BITTER, BECAUSE IM NOT, FOR NOW I'M ON ELMIRON, GIVING MYSELF HOME TREATMENT OF HEPRAN AND GETTING D.S.M.O. TREATMENTS AT THE DOCTORS OFFICE, BY A DOCTOR WHO REALLY CARES. I GUEST MY STORY IS NEVER, NEVER GIVE UP, ALTHOUGTH IT IS TEMPTING.
    THANKS FOR LISTENING.
    TOM GREEN,
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