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Here's my story. Sorry it's long.

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  • stacyY
    replied
    Hi Billie;
    Wellcome to the group. I belive your right, Donna is a wonderful person with great advice she also has helped me so many times with information.
    I also have had the emergancy instalations which didnt help me at all but maid my ic worse. I also take the Elivil. But now i am up to 150mg. But i just found out recently, that Elivil can cause urine retention. So i not have to contact my doctor on that. So watch out for that. The last 2 months ihave been having problems with the urination. And not being able to go fully. and not being able to go at all a few times. So make sure y ou talk to your doctor on the issue. I hate to have others go threw what i am going threw. But maybe for me its the higher dosage.
    Also I use flexeril, which is a muscel relaxor, works really well. the more you can relax the better it is for the IC.
    Its surpriseing to hear though, that nobody else on the island has never had IC. Its really very interesting. I am wondering how they manage not to have it.
    Take care dear, and remember we are here when you need us.
    stacy

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  • billie
    replied
    Thank you very much for your welcome. Yes, it's hard to describe the pressure feeling to people. It's like a bowling ball on your bladder, I guess is how I'd describe it. The Elavil has helped with that pressure feeling, not as much as I'd like, but so that my life is pretty darn good! Again, thanks for the welcome.

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  • daphne
    replied
    What an amazing story. Good for you in being so pro-active. My case seems almosts the same as yours. The preasure sometimes is just unrelenting. It is so hard to discribe to anyone who does not have it what a painfull bladder feels like. I try to tell people a preasure and terrible cramping. I wish you the best of luck and it is great that you have a new uro. Have a nice night.

    daphne

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  • Sarojini
    replied


    Wow... since you live in such an "unusual" place (don't think anyone has posted here from Curacao before! ), you're doing pretty good with finding care for yourself! And I'm glad you found the ICN. You'll find lots of support here... you're definitely not the only one in cyberspace with IC.

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  • billie
    started a topic Here's my story. Sorry it's long.

    Here's my story. Sorry it's long.

    Hi Everyone. My name is Billie and I'm a transplanted American living on the island of Curacao with my Dutch husband and our two wonderful sons, aged 12 and 14.
    I've had IC since 2001. As is the case with many of you, it took a long time for a diagnosis, which was in August of 2004. I had a cystoscopy with hydrodistension at that time. The inside of my bladder was "beautiful," but the five biopsy pieces they took out showed non-bacterial chronic inflammation. I'd had only 3 bladder infections in my life before January of 2001, no surgeries. Then wham, the pain, burning, voiding every five minutes. I was put on antibiotics, a whole slew of them, for months, even though cultures were negative. I tried the Doxy protocol for months. It didn't help. Finally my uro (there were only 2 on the island at that time) relented and did the cystoscopy.

    I'm in a bit of a good/bad situation. I have the benefit of being treated with both European and American drugs and procedures. Kind of like our goods that are shipped in! Of course I am the only one here on the island with IC, so this board is truly a great thing for me.

    Diet hasn't had any affect on my pain or pressure at all. I've tried the IC diet for over a year. I've had Uracyst intills, which made my pain much worse. I've tried Cytotec, 200 mgs. 3 x a day for 9 months. It didn't help. I had to quit because of side affects. I quit abruptly and had horrible hot flashes (I'm only 44) and didn't have a period for 3 months. I also developed bad nerve pain while on Cytotec. I'm finally getting better from that nightmare and am almost back to normal. I have to say my uro at that time would prescribe what I'd read about on this site, so I wasn't all on my own.

    I've been on Elmiron, 100 mgs 3 x a day, since December of 2004. It really hasn't helped that much. I've also been on Elavil, 10 mgs, for about 7 months now, which is exactly how long ago Dr. J. Bade left Holland and came to Curacao to join the urology practice with my uro. He has published many papers on IC and I thought it was a miracle for me. No miracles yet, but I think the Elavil has helped a lot. I haven't had a bad, bad flare for a while, but the every day pressure is what is so maddening.

    I must thank Donna for helping me with posting. I really admire her and everyone on this site.
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