Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: mainelykk58, 55-64 Female (Patient) Published: September 15

I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It's as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life.

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Comment from: Jasmine, 35-44 Female (Patient) Published: November 11

I am 6 weeks pregnant and I am suffering from interstitial cystitis. It has gotten worse since my pregnancy. I wake up every night from the burning and pain! The pain subsides after a while.

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Comment from: Swanngirl 9, 25-34 Female (Patient) Published: May 27

I have had interstitial cystitis since I was 15, and it has gotten worse as I have gotten older. It hurts most at night, it hurts to take a shower, and simple tasks are hard.

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Comment from: Nikka, 45-54 Female (Patient) Published: July 28

I came here hoping to hear what the pain is like to everyone. For me it is a constant burning in what feels like my bladder, but sometimes feels vaginal. Sometimes I have a pressure sensation that goes with it, but not always. It never hurts when I urinate. It seems my symptoms change from flare up to flare up. I'm just curious as to how other people with interstitial cystitis experience the pain.

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Comment from: AlwaysaLady, 55-64 Female (Patient) Published: April 22

Three years ago I was diagnosed with interstitial cystitis (IC) and after having exploratory surgery and numerous amounts of antibiotics and bladder distentions, I am without any relief. I went to a holistic healer who suggested trying Benadryl once a day. I did and by the second day all the symptoms were gone and I have not had an attack since.

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Comment from: jcampbell, 35-44 Female (Patient) Published: January 29

I have had interstitial cystitis for more than a year now and my pain has gone from mild to severe in a few months. I can't go to the bathroom without extreme burning and the pain after I go to the restroom lasts for at least an hour after that. It's made me have trouble siting, standing, even walking, the pain is so bad all I want to do is sleep. It got bad after a surgery.

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Comment from: jodi1478, 25-34 Female (Patient) Published: February 06

I am 25 years old. I was diagnosed with interstitial cystitis two years ago. I have always had endometiosis, cysts, and tumors. I feel as if I'm always in pain. It was impossible to have sex with my husband because the pain was so bad. I had a hysterectomy because my gynecologist thought it was female-related, and after I had that done, I was still in pain all the time. So my doctor sent me to a urologist, and he tested me and told me I had IC. I take Elmiron 100 mg, three times a day and percocet as needed. I use vaginal valium before sex. My pain level is an “8” most all the time, and I get up about 10 times in the night to use the bathroom and about that many in the day. If I don't go to the bathroom as soon as I feel the urge, I will wet myself. When I do go to the bathroom, it is very painful!

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Interstitial Cystitis - Symptoms and Signs Question: What were the symptoms and signs of your interstitial cystitis?
Interstitial Cystitis - Treatment Question: What treatment was effective for your interstitial cystitis?

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