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I'm a male in his mid 30's living in the Washington, DC area who was diagnosed with IC about a month ago. Like many of the people in this forum, I'd bounced around to several doctors, taken dozens of tests, and tried many different drugs before I found out that I have IC. In my case, it took four years as my symptoms gradually got worse and I got more and more frustrated.
Last month, my urologist performed a cystoscopy with hydrodistention and took a biopsy from my bladder. The diagnosis came back as acute chronic IC with Hunner ulcers. I was relieved to at last to have a clear diagnosis and quickly adopted the dietary guidelines on this website and started Elmiron.
Unfortunately, my optimism took a serious hit after being hospitalized last week when my bladder started hemorrhaging uncontrollably and filled up with large clots that seriously obstructed my urinary tract. I had been bleeding off and on after the cysto, but my doctor said that was normal and would go away. While I was traveling on a business trip, the bleeding and clotting got worse and I was hospitalized in a random city in between flights. They kept me on a catheter and irrigated my bladder for two days and took me off Elmiron, which cleared me up and I headed home.
I was nervous about taking Elmiron in the first place when I read that it's a "mild" blood thinner. About a year ago, I started taking baby aspirin for my heart and a couple weeks later I started to urinate a lot of blood and have very large clots. I stopped taking the baby aspirin and the bleeding quickly stopped. For the past several years, tests have consistently found a microscopic amount of blood in my urine, but nothing visible until then.
In addition to sharing my story, I wanted to know if anyone else has experienced a similar situation with Elmiron. The urologist at the hospital and my urologist at home both want me to start taking Elmiron after I'm "fully healed." They think the bleeding was caused by a scab falling off from the biopsy site done during the cysto, but based on my previous experience I think my bladder can't tolerate blood thinners. I do have moderate IC symptoms and would like to find a treatment that can help me, but I don't want to spend more time in the hospital either.
Thanks for taking the time to read this and I look forward to any insight or information you can share.
Last month, my urologist performed a cystoscopy with hydrodistention and took a biopsy from my bladder. The diagnosis came back as acute chronic IC with Hunner ulcers. I was relieved to at last to have a clear diagnosis and quickly adopted the dietary guidelines on this website and started Elmiron.
Unfortunately, my optimism took a serious hit after being hospitalized last week when my bladder started hemorrhaging uncontrollably and filled up with large clots that seriously obstructed my urinary tract. I had been bleeding off and on after the cysto, but my doctor said that was normal and would go away. While I was traveling on a business trip, the bleeding and clotting got worse and I was hospitalized in a random city in between flights. They kept me on a catheter and irrigated my bladder for two days and took me off Elmiron, which cleared me up and I headed home.
I was nervous about taking Elmiron in the first place when I read that it's a "mild" blood thinner. About a year ago, I started taking baby aspirin for my heart and a couple weeks later I started to urinate a lot of blood and have very large clots. I stopped taking the baby aspirin and the bleeding quickly stopped. For the past several years, tests have consistently found a microscopic amount of blood in my urine, but nothing visible until then.
In addition to sharing my story, I wanted to know if anyone else has experienced a similar situation with Elmiron. The urologist at the hospital and my urologist at home both want me to start taking Elmiron after I'm "fully healed." They think the bleeding was caused by a scab falling off from the biopsy site done during the cysto, but based on my previous experience I think my bladder can't tolerate blood thinners. I do have moderate IC symptoms and would like to find a treatment that can help me, but I don't want to spend more time in the hospital either.
Thanks for taking the time to read this and I look forward to any insight or information you can share.
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
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