Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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: loco, 55-64 Female (Patient) Published: March 05

I have had interstitial cystitis (IC) for half my life now, ever since a bladder infection diagnosed at age 31 (I'm 63 now). I think I've tried almost every treatment and nothing has helped. Sometimes my teeth are on edge so much from the pain I want to scream, even while I am in front of a class. (I'm a teacher, so screaming would be bad!) Lately, I am taking more and more Pyridium, up to 3 pills a day, and hot baths, and I have started taking Paxil again which I used to take as a headache deterrent but now I am hoping will help take the edge off and make me more psychologically stable. I have also started doing daily meditation. I once saw a physical therapist who taught me internal massage on the pressure points using a dilator; I'm thinking of trying that again.

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Comment from: Tamsy, 75 or over Female (Patient) Published: December 23

I have been taking Elmiron for interstitial cystitis (IC) for over 15 years and it has helped tremendously. Of course I have occasional flare-ups at which time I take Pyridium. It is thought that the IC is an autoimmune problem as I also have endometriosis, colitis and chronic sinus congestion. My main problem now is that the Elmiron causes high liver enzymes so my gastroenterologist wants me to stop the Elmiron. I don't see how I can do without it. Elmiron has a half-life of 20 to 25 hours which is not much, of course. If I stop it for several days, then my liver enzymes are normal. There should be a happy medium here.

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Comment from: Tonya, 35-44 Female (Patient) Published: December 16

I am 36 years old and was diagnosed with interstitial cystitis (IC) in June of 2007. I had symptoms for years but was able to ignore them until about February of 2007 when I could barely work. My symptoms then are the same as they are today: fatigue, pain in pelvic area and low back, sometimes in my hips and down my legs, and tenderness when pressing on my bladder. I went to a primary care physician (PCP), had a urinalysis and he said it looked like I had 'a chronic urinary infection not acute' so he put me on an antibiotic. That didn't help so he gave me a longer regimen of the same antibiotic. That didn't help so he gave me a stronger antibiotic. No relief. He wanted to rule out kidney stone, appendicitis, etc. But I didn't have insurance at the time. The pain was so bad one day that I went to the emergency room (ER) and had several tests to rule out a kidney stone, any bacterial infections or STDs, appendicitis, and everything was negative. I had a history of endometriosis so I thought maybe it's that. I was of course at my wits' end and getting very depressed. I saw my gynecologist and he thought it was endometriosis as well, so he did a diagnostic laparotomy. All negative. After the surgery when I saw him in his office he gave me an IC questionnaire. He decided that's what I had. He put me on Elavil and Elmiron and did 2 bladder instillations in a week. The following week my house sold, I paid off a lot of debt, moved and took a great job, i.e., got rid a lot of stress! I didn't have any symptoms for about a year until I had several deaths in my family and a lot of stress again. I tried eliminating things from my diet but couldn't tell a difference. I've had numerous hydrodistentions and they eliminate the symptoms for a few months depending on my stress level. I'm almost certain that my flare ups are directly related to my stress level. I really hope my post helps someone. It is not easy to deal with.

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Comment from: Sonkst, 55-64 Female (Patient) Published: November 19

I have had interstitial cystitis (IC) for 13 years. There were times I when I thought if I had to live with the pain for 25 more years, I'd rather be dead. Since I found the most wonderful urologist ever, I have learned how to cope. I'm not a fan of taking any kind of medication (since you never know if it will send you into a flare) but three things that are a must for me are, vaginal Valium, it doesn't seem to affect me the way oral Valium does so that was a plus; then Prelief before meals especially if I have noticed in the past there was a reaction to that particular food; and slippery elm and uva-ursi.

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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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