Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: NACORAL, 35-44 Female (Patient) Published: April 14

I have suffered with interstitial cystitis for about 6 years now. I tried boric acid tablets that I make with vegetable capsules and insert one at a flare up. Works wonders. As for pain I stop stressing.

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Comment from: Drained, 35-44 Female (Patient) Published: January 02

I was told I had interstitial cystitis about 5 years ago but suspect I have had it since I was 18. I had a bad flare up in January and for the last year flare ups happen often and at the moment I am on a 2 month flare up with no relief in sight. I notice obvious blood in my urine. I sometimes pass actual clots. I just joined a support group and I think that will make a difference because I will be able to talk to people that feel the way I do. I abide by the diet to a T. But still have these flare ups.

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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: 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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