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Living with Interstitial Cystitis |
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Finding out that you have an incurable disease at the age of 16 isn't an easy thing for a young girl to grasp. The severity and gravity of the situation didn't really hit me until I found out that I'd need surgery twice a year, a hydrodistention with cystoscopy - an outpatient procedure that allows my urologist to check the disease's progress and treat the symptoms. I'm 22 and I have had 16 surgeries since my diagnosis. I have Interstitial Cystitis, a disease that usually affects only woman past their forties. IC is a disease causing cysts and ulcers to form on the inside of the bladder, eating away at the lining, or GAG layer. It causes intense nerve pain, increased chance and intensity of infections of the bladder and urinary tract, and urgent, frequent trips to the bathroom. By the time I was diagnosed I was going up to 30 times a day. And, at this time I knew what I had to do:anything I had to. Most medicines I've tried, including Cardura for the heart, Flomax for the prostate, and Neurontin for seizures, landed me in the Emergency Room. Others, like the only medicine that is currently FDA approved for my condition - Elmiron, made me so sick that I couldn't tolerate it orally or via catheter. I've had many problems dealing with pain and depression. Three years ago I decided to allow my urologist to implant an Interstim device into my back; a wire with 4 barbed electrodes attached to my sacral nerve, attached to a battery that is in my lower back, controlled by a remote device. I'm only going about 12 times a day now, which allowed me to ween myself off of one drug, Ditropan. Now I am on Elavil, an anti-depressant for pain and an aid for sleep; Valium, to relax my muscles and stop bladder spasms, and Levorphanol, a very intense pain killer that is Morphine based. Now I'm 22, I've just graduated from art college, and I'm off of my parents insurance. My family helps as much as they can, but it's a struggle.
I hope my story can persuade others to share with us. |
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sashaying |
Posted
4 Years, 11 months, 3 Weeks, 4 days ago
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Personal Story |
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All Votes: 33 |
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