Patient Comments: Interstitial Cystitis - Describe Your Experience

Please describe your experience with interstitial cystitis.

Comment from: Stacey, 25-34 Female (Patient) Published: September 15

I have had bladder problems since the age of 5. I'm now 26. My doctor said it must be interstitial cystitis and gave me a lot of Cephalexin. So far, it hasn't helped. I am up at least eight times a night with the pain of having a full bladder, but of course, it's not full at all. Nearly eight years ago, I started getting excruciating pain when I emptied my bladder. Then it got worse, and the pain was so bad, I couldn't even stand up. The stinging sensation is breathtaking. For the past two years, I've been admitted to hospitals for tests. I was diagnosed with chronic interstitial cystitis in October 2007 and put on a course of treatment called Cystostat. I have to admit, I am feeling slight relief but not much. I have to take Dihydrocodeine for the pain and even with the treatment, I usually take two tablets a day. I can't hold water very long. I'm at the toilet every five minutes when I'm on a night out. I must have the bladder the size of a pea. I would love someone to find a cure for this thing because no one else I know can understand just how much this ruins your life. My life would be 100% better without it.

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Comment from: Maggie, 45-54 Female (Patient) Published: August 27

I suffer with very bad bouts of interstitial cystitis with chronic pain and frequency where I can be up anywhere between four and eight times a night. This may last for two to three days, and then things settle down. Sometimes the periods between bouts can be two to three weeks; sometimes it's only days. I am not on any medications at present.

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Comment from: jjmo1084, 65-74 Female (Patient) Published: August 27

I had been on a .25 hormone patch for 20 years after a hysterectomy. I decided to go off the patch in May of 2007. Then the chronic cystitis really clicked in. I have had a complete workup by a urologist including a CT scan. It is now August of 2008 and I still have an urgency to pee and pelvic pain. I have not eliminated a lot of foods. I do exercise every day by walking one or two miles. I am 74 years old. Also, the best relief I have found is from a low dose of an antibiotic (250 mg) a day. If I periodically go off the antibiotic, the infection returns within a week. I believe I have had this condition for many years. The patch made the bladder infections less frequent.

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Comment from: Lea, 45-54 Female (Patient) Published: February 05

I am forty eight years old now. I have suffered from cystitis for 28 years, it was always related to E.Coli and triggered by intercourse. I was continuously treated with antibiotics. Now that I gave up on intercourse altogether, I have no more E .Coli infections but I have frequent need for urination and the wall of my bladder are always inflamed. Some days are better than others. If I overindulge with food and sweets the symptoms become much worse. I am not diabetic and my blood sugar level is normal.

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Comment from: smellychelly, 35-44 Female (Patient) Published: February 05

About 14 years ago I had bladder pain so of course I went to a urologist. They kept giving me antibiotics, but the pain never went away. I finally was told about this Naturopathic doctor so I went to see her. I told her all my symptoms. She did a culture on me. Hello, no bacteria. There is no need to be on antibiotics if bacteria is not present. I was on them for so long that they can do major damage to your bladder wall. She gave me some paper work on IC and said, this it what you have. She then gave me all her little remedies to take. It worked! I get a flare up every now and than but it is usually from something I ate or drank. I never believed in natural medicine but I was sold.

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Comment from: Alimum3, 35-44 Female (Patient) Published: February 05

I have recently been told I have IC. I've been having really bad pain in my bladder (I think). The Doc did a cystoscopy and lapendoscopy. He now believes I have IC. The only thing is I don't need to wee lots in fact quite the opposite. I only realize I need a wee when my bladder pain increases. I've been prescribed with Percocet which actually stops the pain but makes me very dizzy and wobbly.

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Comment from: Tennisbam, 65-74 Female (Patient) Published: November 19

I have had IC for probably twenty years. For me, it is cyclic the severity changes from time to time. The pressure in my bladder refuses to let me sleep more than twenty minutes at a time. This has taken its toll on my quality of life. About ten years ago I was diagnosed with Fibromyalgia which has caused a tremendous amount of pain. For whatever reason, while I was going through radiation for Breast Cancer, my systems lessened. I would appreciate any help anyone could give.

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