Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: Ramona, 65-74 Female (Patient) Published: February 24

Have had IC for about 12 years. At first was diagnosed with bladder infections and took antibiotics for years. Was diagnosed with IC about 6 years ago. Had all the treatments that are available and took pyridium all the time for the pain. About 2 months ago I had a sinus infection and took Aleve for it. After 3 days of Aleve I realized my bladder was no longer bothering me. I take an Aleve 220 mg. every morning now and have not had any problems at all in 2 months. My urologist told me to keep taking it. It may not work for you but is worth a try. I can't believe the difference - only go to the bathroom once at night and usually 5-6 times during the day. I drink about 64-96 ounces of water every day to keep everything flushed out.

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Comment from: Mike, 35-44 Male (Patient) Published: December 14

At first I thought it was a bladder infection as the symptoms were very similar and I had had a bladder infection not too long before. When tested this time they said there was nothing detected. I was lucky in the fact that I never experienced a lot of pain with it like others have, but it was to the point that I could not get rid of the feeling of having to go to the bathroom, ever. When I did, the urge would be reduced but not gone. It took a LONG time to finally get diagnosed with IC, and it was discouraging to find there was no cure, however, avoiding the triggers helped a lot, especially dark chocolate, coffee, and other caffeine beverages. Dark chocolate was the worst. Over time, some medications and controlling my diet helped a lot. One medication that helped me the most was Ditropan. That was several years ago but now my symptoms are getting worse again so I am looking at either taking Ditropan again, or seeing what is new and improved since I last checked into it. The biggest symptom of my IC is a constant irritation around the bladder area which can usually be relieved by urinating, for a short period of time before it returns again. Again, before I realized what was triggering it, when I ate a fair bit of dark chocolate, the irritation was so bad that I could not even get to sleep. I hope that helps someone out there.

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Comment from: 75 or over Female (Patient) Published: September 15

I was diagnosed many years ago with IC through the cooperative effort of a wonderful family doctor, allergist, and urologist. I had suffered pain for many years before the diagnosis. The allergist placed me on a strict diet for one month, then we began to reenter foods one at a time to find the trigger. I have been able to control the IC since that time as long as I avoid corn, shellfish, and several fruits. If I do eat one of these foods, then approximately 24 hours later I start experiencing pain and it continues for several days.

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Comment from: Shelley, 35-44 Female (Patient) Published: July 19

Hi I have been under a Urologist in Brisbane for over two years now for chronic cystitis. I have moved away to the country 12 hours away. My Dr put me on Endep for Cronic cystitis. After some playing around with dosages I have been pain free apart from the occasional day. I have been taking 1- 50mg tablet at night. I however find that in this time I have put on 14kgs. No amount of exercise or lack of food helps. I am a small eater, always been active and a size 10 -60kgs. I now find I'm struggling to fit into size 12/14s and weigh 74kgs and my feet swell up. I went on line to see what the side effects for endep are and found that excessive weight gain that can't be controlled is one, also fluid, another symptom. Endep does work well for me. I have tried decreasing it and even going off it altogether as advised by my Doctor, but found that the symptoms came straight back. I need to go on something else but don't know what. Something that won't make me put weight on. I have been going to the gym for the past 1 1/2 years.

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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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