Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: ICsufferer, 25-34 Female (Patient) Published: December 18

I am a 31-year-old female diagnosed with IC six months ago. For quite a while it's been lots of pain. I had to work from home; I had to quit a job during the day. It helps when I sit on a warm heating pad. I am on Zoloft, Zanaflex and was prescribed Elavil. None of them really help. I take three Elmiron a day.

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Comment from: yaya, 25-34 Female (Patient) Published: October 28

I started experiencing symptoms of interstitial cystitis around age 26. Since I also had fibroids & endometriosis, doctors concentrated on treating these two conditions. It took about 4 years before I was diagnosed with IC as well as endometriosis and fibromyalgia. Like most people with IC, the pain was unbearable. I was in and out of my doctor's office seeking relief from pain. I even had a spinal block done, but this too did not help. Over a 6-year period my life was at a virtual standstill as I had to rely on others to help me with most physical stuff. In 2006, I was referred to a pain clinic. Since I wasn't responding to my then current treatment regimen, he told me to take 100mg tramal 3 times a day, regardless of how much pain I felt. This resulted in an eventual turn around in my condition. In addition to Tramal, I take 25mg amytriptiline every night. This regimen has given me my life back. I'm now down to 200mg Tramal per day, as well as the amitryptiline. I still suffer from pain, but the highs & lows are manageable. It's now been two years and most people do not know I have a medical problem, unless I tell them otherwise. Most days I can put in a full day's work and I use my weekends to recover. I know which foods to avoid, as well as artificial sweetners.

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Comment from: lady 1955, 45-54 Female (Patient) Published: October 24

I have had interstitial cystitis for 25 years. The only relief I get is to be on an antibiotic for bladder infection and one that also contains medication for the pain. I took urisid for many years and then prosed and now urelle. I have to be careful of caffeine and citric fruits as the tend to cause pain. It can definitely run your life. I always worry about where the bathroom is when I go places or travel. It's a lousy disease.

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Comment from: Sue, 25-34 Female (Patient) Published: October 24

I am a 32 year old female, diagnosed wtih interstitial cystitis in Aril of 2007. Previously I had assumed it was chronic UTI's but multiple urine tests have shown otherwise. The pain is my worst symptom - to the point where I can't sit down, can't walk, can only hunch over and do the "pee pee dance" until the pain subsides with Pyridium. It's almost as though my bladder is spasming - that's the only way I can describe it to someone who hasn't experienced the pain. The Pyridium will help for a couple hours, but typically the episodes will last for days at a time. Strangely enough, I can't figure out a trigger - I can't relate it to foods eaten or activities. I do have to wonder if it is stress related. I've had several break outs of pain in the past couple of months and am considering asking my doctor for a trial of a daily medication. It seems that Elavil has some positive effects for others. I can go months without any problems though. Someone needs to discover some better answers for this horrible debilitating illness.

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Comment from: Betsy, 55-64 Female (Patient) Published: September 15

I am one of the fortunate ones with interstitial cystitis because mine is avoidable if I abstain from beverages made with the sugar substitute, aspartame. Usually, if I consume 32 ounces of a diet soda (made with asparteme) in one day, the symptoms will appear. I have no difficulty with sodas containing Splenda. I am grateful to my urologist for identifying aspartame as a possible irritant.

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Comment from: 55-64 Female (Patient) Published: September 15

I have had severe pelvic pain for almost a year, along with frequency and urge incontinence. My doctor says I "probably" have IC but can't say for sure unless a biopsy is done. Last month, I had an Interstim device (Medtronics) installed. My improvement has been marginal, but I was told that this device is sometimes prescribed for IC. Elmiron didn't work after six months, so I'm currently on Lyrica. It was very sedating at first, but I have high hopes for relief.

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Comment from: Vee, 45-54 Female (Patient) Published: September 15

About six months ago, I was given a diagnosis of interstitial cystitis. I had been having severe pain for about one year. This pain started during my radiation treatment and after my chemotherapy treatment. At first, I just assumed this pain was from the cancer treatments and eventually it would go away. I've been taking Desipramine, which helped a lot up until two months ago. The pain came back, so I am also taking Elmiron. At this point, neither one of these seems to help. My pain level is about an 8 or a 9 most of the time.

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