Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: Lorraine, 45-54 Female (Patient) Published: January 21

I am a 52-year-old female and have been diagnosed with IC for just over a year. I have urinary frequency and pain when my bladder is empty. When the condition is at its worst, I cannot drink any acidic drinks and have been advised to give up caffeine. I have had cystoscopies twice in the past two years and both times areas of "chronic inflammation" were seen and subsequently burnt off. On the first occasion, my consultant urologist thought that I had bladder cancer but pathology reports were just chronic inflammation. She then thought it was an ulcer but pathology said just it was just chronic inflammation. Both times my symptoms improved after these areas were removed, but gradually they returned. I am now having bladder instillation every month, but the symptoms are gradually returning. I try to drink a lot of water and am currently not drinking tea or coffee, as this seems to make the frequency worse. Sex is not painful, and I do not have severe pain on urination; the pain is mainly when I drink acidic drinks and my bladder is empty.

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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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