Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: Vanessa O, 19-24 Female (Patient) Published: June 02

I have been having urinary tract infections (UTIs) since I was 14. I would get them monthly and none of my doctors would give me medication and they would go away within a couple days. I had my son at 17 and my UTIs went away for years. I moved to the city when I turned 19 and about a year later the UTIs came back. They were not very frequent as before so the doctors did not have any concerns. At age 22 I had my daughter and the UTI"s came back monthly. My doctor finally sent me to a specialist and I was diagnosed with interstitial cystitis (IC). The specialist but me on Elmiron three a day, Uribel for pain and the diet. It has been two years now and I have found out food is not what gives me flare ups, sex is what gives me flare ups. My husband is gone 4 days a week for work and when he gets home if I have sex every night for the three nights he is home I flare up and am in pain for about 5 to 7 days. I had to quit my job because if I didn"t, I would have been fired for missing too much work. This disease sucks and is painful and I feel alone because no one I know really knows how painful the flare ups are.

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Comment from: KaraC25, 19-24 Female (Patient) Published: May 22

I am 21 years old and I have been suffering with interstitial cystitis since I was 18. I find that when I don"t have a flare up, I can live a pretty normal life. But when I do have a flare up, I"m stuck in bed or on the toilet or in a hot bath trying to do anything to relieve the pain. I have an urgency to urinate, on top of excruciating pain. I cut out all soft drinks and citrus fruit. I don"t notice anything in particular that causes the flare ups. I have tried the bladder installation, which relieved the pain temporarily. I heat up a water bottle and stick it directly on my private area. I have currently dealt with a flare up for almost a week. Going to school full time and working is miserable.

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Comment from: Jazzy, 35-44 Female (Patient) Published: April 17

I am 43 years old and I have been suffering from interstitial cystitis (IC) for about 7 years. I had extreme pelvic pain, endometriosis, cysts and tumors. Doctors suggested hysterectomy. I still kept getting seromas, went through interventional radiologist removing fluid filled pockets. Not to mention, after one of my surgeries the doctor cut my bladder and that is when all the spasm started. I have been on Elmiron, Elavil, Uribel, and Valium and I was just given the vaginal Valium to insert at night. It can be very depressing. The next stop is going to be pain management, which I don"t believe is going to help. I can"t be a zombie, I code neurosurgery claims every day.

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Comment from: ahennasey, 25-34 Female (Patient) Published: March 26

I have suffered with interstitial cystitis for over 11 years now. I have extreme pain and nothing seems to make it go away. I have changed my diet, cut back on smoking and even gotten off the soft drinks. I have even lost weight to see if that would help, noting does. The pain is so bad at times all I want to do is cry and sleep. Individuals who do not have this or even know what it is have no idea of the pain and suffering that someone with this has. I wish there was a cure but unfortunately there is not. I really wish there were support groups that I could attend but I do not know of any.

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Comment from: rwaltman, 35-44 Female (Patient) Published: March 03

I started to suffer with really bad bladder problems about 14 years ago, and the older I get the worse it gets. I get up at least 40 times a night and without a lot of sleep I feel horrible the next day. I use a heating pad that seems to help a lot and the Azos help with the pain a little. I thought that I was the only person in the world with this problem. I notice that when I drink orange juice or eat watermelon or eat certain foods it makes my bladder problems so much worse. I really hope that a cure for this interstitial cystitis is found because I really don"t know how much longer I can deal with it.

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Comment from: Drained, 35-44 Female (Patient) Published: January 02

I was told I had interstitial cystitis about 5 years ago but suspect I have had it since I was 18. I had a bad flare up in January and for the last year flare ups happen often and at the moment I am on a 2 month flare up with no relief in sight. I notice obvious blood in my urine. I sometimes pass actual clots. I just joined a support group and I think that will make a difference because I will be able to talk to people that feel the way I do. I abide by the diet to a T. But still have these flare ups.

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Interstitial Cystitis - Symptoms and Signs Question: What were the symptoms and signs of your interstitial cystitis?
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