Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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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Comment from: anniem, 65-74 Female (Patient) Published: February 05

I may have found a relationship between ZICAM Allergy Relief (inserted into the very first part of each nostril) and the pain of IC. I had a very bad flare up about 2 months ago, and I wondered if it had anything to do with taking a lot of allergy meds including this ZICAM. I have been free of pain for about 2 weeks, and today had an allergy attack, so took this ZICAM. All of a sudden, pain of IC again. I also took an inhalation of Advair because my chest seemed somewhat congested. Advair is just marvelous, but could it also be a cause of painful IC? It has helped the congestion, but has it also caused IC pain?

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Comment from: recently married, 25-34 Female (Patient) Published: February 05

I have been living with ic for almost 2 years now. I do know my mother always complained of pelvic pain and urgency, but I guess I never really understood her. We both have it now, but we take different approaches to it. She decided she lived with it long enough and does not take medication -she lives with it-. I take Elmiron -have been taken it it for almost 1 yr. I experienced some relief, but as you know relapses when it likes to. Matter of fact I am up right now at 5:00 in the morning. No one else really understands what you go through and how exhausting the next day is with little sleep. The Urge is horrible, but thankfully no pain. I will try acupuncture since it brought some patients relieve, I am willing to try homeopathic meds if available.

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Comment from: jodi, 19-24 Female (Patient) Published: November 19

I am a 23 year old university student who has dealt with IC for over 4 years. I was desperate to try anything to help since I was usually up at night anywhere from 10-24 times (ended up with severe insomnia as a result) and often had to make up to 42 trips to the bathroom during the day. I had to drop out of university and could hardly work. I tried everything from distentions, oral medications, instillations, and even some experimental medications. I was on a strict diet and using acupuncture to alleviate the pain (which surprisingly helped). After 2 years of no relief in sight, I had the sacral nerve stimulator implanted (which wasn't easy or pleasant, but worth it) and have since been enjoying a more normal life since! I still have had to watch my diet and avoid things like alcohol, but life is much more enjoyable.

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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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