Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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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Comment from: HP, 25-34 Female (Patient) Published: September 26

I was diagnosed with it three years ago. I was getting urinary tract infections every so often, but the last one I had didn't respond to antibiotics. My family doctor sent me to a specialist and after running all of the tests I was diagnosed with ic. three years before that I went through chemo and radiation for breast cancer and I thought my nightmares were over, but the ic has given me more pain and problems than the cancer. I was taking Elmiron, and feeling better, but then I quit taking it and my pain and urgency to go to the bathroom returned. I started taking my Elmiron again, but so far it's been 2 months and it hasn't helped. I pray that there will be a cure for this awful condition soon. My heart goes out to everyone with this problem, and you will be in my prayers. This might be helpful: I remember that I ate pineapple the night before I got my last flare up of ic.

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Comment from: Msstarrgirl, 45-54 Female (Patient) Published: August 06

I have a lot of discomfort with my interstitial cystitis. I'm up one to two times every night to empty my bladder. The pain level is an 8, with 10 being the worst. My doctor told me that most people don't have the pain all the time like I do. I take Elmiron (100 mg) twice a day, and Ultracet for pain as needed.

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Comment from: susan, 45-54 Female (Patient) Published: July 17

I've been dealing with interstitial cystitis since 1993 and let me tell you I'm not the same person. My bladder dictates my every move and because of that I hardly ever leave my house.

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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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Interstitial Cystitis - Symptoms and Signs Question: What were the symptoms and signs of your interstitial cystitis?
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