Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: Lynn, 55-64 Female (Patient) Published: March 20

I have had pelvic pain for years now and it really bothers me that if I really have interstitial cystitis (IC), when I had a colonoscopy the gastroenterologist only found benign polyps, which he removed. My gynecologist did a transvaginal ultrasound and they could not find my ovaries and my family doctor sent me to the urologist and right away she said I know what your problem is, you have interstitial cystitis. She immediately put me on Elmiron 3 times a day and she never did any testing on me to give me that diagnosis. I am not happy with the Elmiron because it is very expensive and I do not like taking a medication that may not be the right one for me. I have discussed this with her and she is determined I have IC. Now this is a thin blood thinner and you have to go off this for a week if you are having surgery and I just had a severe flare up that I thought was a bladder infection which my family doctor took a urine sample and it showed no bacteria, but lots of inflammation.

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Comment from: Tina57, 55-64 Female (Patient) Published: October 08

Symptoms and signs of my interstitial cystitis are that I am in constant pain of some form or another! It's grueling pain: one day my hips and back down my legs, then another day my pelvic area and bladder are on FIRE! I feel like my body is toxic to boot!

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Comment from: ahennasey, 25-34 Female (Patient) Published: February 15

I have had interstitial cystitis for almost eight years now. I can tell you it is a very painful experience. I have done everything from changing my diet, cutting down on smoking, drinking more water and exercising, but nothing seems to work. I have had many bladder distentions, although they are supposed to last for a couple of years it never does for me. I am in pain every day of my life to the point where it puts a damper on my life.

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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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