Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: chalker58, 55-64 Female (Patient) Published: April 01

I have the symptoms of interstitial cystitis, the pain and frequent need to urinate. I"ve done some research and found that taking corn silk capsules or tea really helps. I purchased the capsules and will see how it goes.

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Comment from: Santafe, 55-64 Female (Patient) Published: August 08

I was diagnosed with bladder infections from the time I was 20 and went through many painful procedures, including barbaric urethra dilations. Finally, when I was about 48, I went to another urologist who mentioned IC. He suggested I stop eating citrus, aged meats and cheeses, and drinks with caffeine or alcohol. He also prescribed Elmiron. For the first time in 28 years I didn't have pain. Since retiring I have stopped Elmiron, but I stay away from citrus and caffeine. I am so thankful for that urologist who told me about IC.

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Comment from: Sadie, 35-44 Female (Patient) Published: August 08

I am a 42 year old female. I am currently in the process of being diagnosed with IC. For the last six years I have been torn between having bladder, urinary tract infections, yeast infections, and or bacterial infections. Many times I have been to the doctor with a burning sensation in my vaginal area. I have been tested several times for any sexually transmitted diseases, and always came back with negative results. Finally, I started researching my symptoms and came up with IC. I have had the scope performed and nothing was found several years ago. I drink a lot of decaf tea with lemon. I tried cutting down on the lemon, and I have seen some improvement. I have started to notice that I have to use the restroom and urinate more and more frequently. Hope to find some relief soon.

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Comment from: Janrose, 45-54 Female (Patient) Published: July 09

I suffered from IC for about 1 year. I tried to limit the foods on the list provided by my Dr. But it didn't help much. I didn't realize that it was mainly the diet cola that was the cause of my IC problem, I am 99% better since I quit diet cola..I used to consume about 2 cans per day.

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Comment from: Elmiron, 65-74 Female (Caregiver) Published: February 06

My mother suffered with interstitial cystitis. It was horrible. She was in such pain all the time. She ended up hardly being able to walk because of the pain. The doctor gave her pain medications and Elmiron. Nothing helped. When I would help her to the doctor for her appointments they would just look at her like it was all in her head. It is a terrible disease!

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Comment from: coley, 75 or over Female (Caregiver) Published: January 03

My 81 year old mother has been dealing with interstitial cystitis for over ten years. This frail, little old woman is going thru hell and I am not sure what else we can do. She is on oxycodone 3 times a day and supplements that with extra-stength Tylenol. She is in constant and severe pain she does not have symptoms of frequency. She sits with a hot water bottle over her pelvic region. This disease has made an invalid of her. She can hardly walk; when she stands for over 5 minutes she suffers even worse for the remainder of the day. She has been to several urologists, a gynecologist and even a neurologist. We are at our wit's end. Even on her pain medications she states her pain is at an "8". I can hardly bear to be around her. She feels horrible all the time, it's so depressing.

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Published: September 26

Most women have had a bad bladder infection. IC is like having one all of the time. One thing that helps me is drink water only. NO tea, coffee, soda, juice, alcohol. It will help. Also a supplment that helps is L-Argintine.

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Comment from: brenderH, 55-64 Female (Patient) Published: January 26

I'm thinking interstitial cystitis is a possibility for what I've been experiencing this last week. I've had countless bladder infections in the past, I am incontinent, and I have had a urethral sling operation that was only mildly effective. This week I've awakened often during the night with bladder pain that is only relieved by urination. I went to the doctor and was told there was blood in my urine, and he prescribed Bactrim. After three days I saw no improvement, and he switched me to Cipro, which has always helped my bladder infections. Again, after three days, there has been no improvement. I was starting to fear there was a problem with the sling (I've read that they can erode the skin where they are attached), but the symptoms of interstitial cystitis make sense. Is there an increased risk of bladder cancer with interstitial cystitis? Both my father and his grandfather had bladder cancer.

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