Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

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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Comment from: mainelykk58, 55-64 Female (Patient) Published: September 15

I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It's as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life.

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