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interstitial cystitis

Ruth D

Message 2 of 8 Previous Next

I have IC. I have had it about a year and a half now. Only figured out what it was about 5 months ago though. At first it wasn't that bad. If I had to go to the bathroom I had to go right away or else I was in pain for days. I started spending alot of time in the bathroom! I told my Gyno about it on one of my regular visits and he started talking about IC. Of course I had never heard of it. My Urologist did a cystoscopy on me and prooved that it was indeed that. He Hydrodystended my bladder - that didn't work at all. Instead the pain became increasingly worse. To make a long story short - after alot of trial and error and much more pain we figured out a drug combination that holds most of the pain at bay. In fact one of the pills I am on is new, just recently FDA approved. It supposedely rebuilds the lining of the bladder - in essence curing the problem. However you have to stay on that pill for the rest of your life because the lining will start to degrade if you quit it. The pills I am on are Elavil - a chronic pain med. Detropin - an anticramp med - three times a day and Elimron - the lining rebuilder - also three times a day. they say that it will be at least 6 months before I will see a benefit from elimron. but between the elavil and detropin and the prescription pain med that he also prescribed to use as needed I have been doing pretty good. Yes My bladder is enlarged to - it is from swelling and the constant irritation of the urine against the tissues in the bladder. I am hoping that when elimron takes affect that the bladder will return to its normal size. I also have endometreosis - so my uterus is enlarged as well - somehow I keep a nice figure though :-) I am on meds for that as well. But I would talk to a urologist about the meds and see what they say. I am only in pain every so often instead of constantly and when I am in pain i can take the pain med and it usually kicks in in about a half hour. there are some side effects so you'll want to look into those - but for me I don't care what side effects there are - anything was worth getting out of that pain. I am only 21 - it was really affecting my work and school. I used to do both full time. I decided to take a break from school, I think the stress was intensifying the problems. I am really curious as to what causes IC. I don't know if it is hereditary or what. And what triggers it? Have you noticed any pattern in your family or any changes that may have caused it to start? My family has quit a bit of auto-immune diseases including Lupos and MS - and the first time I noticed bladder pain was after I had surgery on a bad kidney stone. - Just trying to figure things out since the internet sites all say they don't know what causes the disease. anyways - good luck.


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