Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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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Comment from: Brinda, 25-34 Female (Patient) Published: November 11

I was living with constant urinary tract infections (UTIs), and 7 stones since I was a teenager. I can't tell you how many doctors told me and my mom that I had the worst infection of anyone they had ever seen. When I was 27, I was diagnosed with cervical cancer for the 3rd time since I was 19 years old. I also had ovarian cyst constantly that even amazed the doctors. So they did a hysterectomy on me and when I woke up I tried to tell the nurse that the catheter didn't feel right but they wouldn't take it out till the next morning. When they took it out I never urinated the same again. It was always constant pain and I could pinpoint exactly where the pain ran up to. So for 3 years now I have had kidney infection one right after another. And I would even feel like I had one and would swear that I did and I would be negative. My obstetrician/gynecologist that inserted my catheter during my hysterectomy told me that it was all in my head that there was nothing wrong with me and that I was pretty much a pill popper. So when I told my regular physician what he said, he sent me to a urologist and he knew exactly that I had interstitial cystitis (IC). So he put I me in surgery the next day and dilated my bladder. When I came to, he was telling my husband how bad my bladder was. Finally someone believed me and found out what was really wrong with me. I'm so sorry this is long story but this is the closest thing I have found for a support group. I had a flair up and I was alone and scared. I thought no one out there knew what I was and still am going through. I am so thankful I found this page! I thank you for letting me share my story, and letting me realize that I'm not alone. And there are people out there who know what I'm feeling, not just emotional but how the pain is overwhelming and sometimes debilitating.

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Comment from: blondnj, 35-44 Female (Patient) Published: August 11

I was only diagnosed with interstitial cystitis (IC) a few months ago but it has been very difficult. Most of the medications the doctors have prescribed for me either haven't worked at all or only help for a little while. I had my first bladder instillation today and I just went to the bathroom for the first time a few minutes ago and the pain was so bad! It was like my first flare up almost a year ago when I didn't know what I had but that something was seriously wrong. I am in so much pain and on my 2nd doctor, so depressed because nothing seems to help me to feel better. I am on the diet and have lost a lot of weight. My family and friends say that I am too skinny but I am so tired of not being able to eat what I want, only being able to eat safe foods, even then sometimes I still get flare ups and am in pain. I am so tired of going to parties or out to dinner and not being able to eat anything there. Tired of being hungry and eating something safe and then being in pain later on anyway. Plus this problem put a big strain on my marriage because I couldn't have sex with my husband because it was too painful. No one I know has heard about IC, so tired of having to explain it over and over, feel so sad and alone, wish there was a support group where I had someone to talk to who understood what I was going through.

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

I'm a 54 year old sufferer of chronic interstitial cystitis. The first symptoms began very suddenly at the age of thirteen. One morning at school I was fine one minute and the next I was in the restroom with the urge to urinate and the urine felt like burning acid. My dad picked me up and took me to the pediatrician. There was no bacteria but plenty of blood in the urine. Nevertheless the sample was sent for culture, I was given antibiotics and sent home with a few Tylenol #3. I was absolutely shocked at the pain I was in. Over the next few days the symptoms got no better so I went back to the pediatrician who changed the antibiotic to a sulfa drug. With couple of more days of heating pad I did feel better. One month after that I was taken to the emergency room (ER) with agonizing bladder pelvic area pain. I was told there was bacteria and blood in the urine this time. I saw the pediatrician about five times that year with bladder infection symptoms. The fifth time he referred me to a urologist. Then the real fun began. I can't remember how many times my urethra was measured to be sure it was not partially blocked. It hurts to have a hard foreign object inserted into one's urethra. Then there was the tiny camera inserted so the doctor could look around inside. No anesthesia is given whatsoever. That hurts terribly. It was unreal. Though I was told my bladder wall was raw and red looking, I was sent home with only the antibiotics; that's only the beginning. Over the years I was made to feel the doctor didn't believe the pain was 'that bad'. Finally at the age of 35 I met a urologist who put me under anesthesia in the hospital operation room, distended my bladder and took pictures, etc. When I woke up later my husband and the doctor were talking in the room. The doctor said, “No wonder her bladder hurts! It's the color and texture of raw hamburger!” I should write a book! It's been a long road.

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