Interstitial Cystitis Community
What do I do next?
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This patient support community is for discussions relating to Interstitial Cystitis .

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What do I do next?

I was 25 when my IC symptoms came on so suddenly.. I remember the moment clearly as I had over ate, menstruating, constipated, and my bladder was so full I could barely walk, it was then that I picked up a heavy bag and felt the tear in my lower left abdominal. Days later my stomach was so swollen it was the equivalent of looking three months pregnant. This was followed by not being able to stand up straight or stand at all, the pain was so intense. I was forced to quit my job and spend the next two months bed ridden without a clue as what was wrong with me. I could not walk, laugh, cough, sneeze, lay in any position either than on my back and no amount of pain killers would help except to put me to sleep temporarily. The next two years were spent going to 12 different specialist, and taking a multitude of tests. Gastroenterology, neurologist, endocrinologist, sports medicine and 3 urologists and pelvic floor physical therapists.. you name it and I was there on the quest for my life back. Finally I was told that my frequent UTI's may be the coming from the inside and I then made an appointment with Dr. Hanno at Penn Medicine. After my Cystoscopy they found bladder lesions in which they fulgerated. They also did hydro distention with medicine. My symptoms were gone, it felt as if i was healed.. The Dr said it sounded like I had "true hunner's lesions" with the response to how well I felt. It did not last however, and I was back in pain after 6 months anxiously awaiting my next one. They did not find any lesions the second time. My symptoms are frequency and severe inflammation, cramping, and intense hypersensitivity.. and of course depression. I have tried going to a psychologist and taking Lexapro, which I am not currently on now. Now at the age of 28 I am in between my hydro-distentions and have just had a flare up in Feb; i have had pain everyday ever since. My questions are about what to do next.. I have been prescribed Elmiron that I am too scared to take.. I have just recently been prescribed Amitryptiline that I am too scared to take and an antihistamine for the sensitivity that I would like advice on as well. I'm currently taking natural remedies that do not really work D'mannose, Aloe Vera, and L Arginine pills.
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