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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.
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.
), 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. 
Hi Billie;
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