Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: Killashandra, 35-44 Female (Patient) Published: May 13

Okay, my experience with interstitial cystitis (IC) is not quite typical. In 2002 I had gastric bypass. I was 150 lb. overweight and have polycystic ovarian syndrome (PCOS) and my doctor said that patients with PCOS did well and most of the symptoms disappeared after the surgery. So I had it. He was right, by the way. Anyway, a year later I was having pain that was like the pain from kidney stones. I had had one of those about 10 years earlier, so I do know exactly what that pain is like. So, after describing the pain, I was given pain medicines (Vicodin) and told to try to pass the stone. After about two weeks, I still had the pain and the doctor decided to x-ray for it. But she couldn"t find the stone. I had an ultra sound, and still no idea why I had this pain because there was no stone. I went to see a proctologist who did a colonoscopy, and couldn"t find the reason for the pain. Then we tried a urologist. I went in for out-patient surgery with him, and he did the distention of the bladder. (I am never doing that again ever.) When I woke up he told me that I did have IC along with Hunner"s ulcers. (Ulcers in the bladder.) We had hoped it would have been one, or the other. Lucky me, I got both. I went into remission without any pain for five and a half years before the IC came out of hiding. Now, I have pain, but it"s random, not daily and sometimes not even monthly. I am not on any prescriptions for it, but I have increased a daily allotment for Benadryl (or generic) which one study is showing that it is reducing the symptoms. So, that"s my story.

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Comment from: Judy, 45-54 Female (Patient) Published: February 04

I was just diagnosed with IC (interstitial cystitis) 3 months back. In 2007 I had a total hysterectomy and during the surgery my colon was nicked and three days post operation I had developed an E. coli pelvic floor infection. The infection ruined my colon. I have had eight abdominal surgeries over the last seven years. Including a bowel resection in 2009 as well as several laparotomies. Finally in 2011 my colon doctor said I have to have an ileostomy. I was having severe nonstop pelvic floor and lower back pain since the hysterectomy. I have also been seeing a pain management doctor since this nightmare began. I have been on a Fentanyl patch and Vicodin ever since. The pelvic pain has never gone away. It wasn't until a little over two years ago that I noticed that there was anything wrong with my bladder. When I was in the hospital during 2007 I had a urologist see me. Well, he did a cystoscopy and saw nothing abnormal at that time. So they had ruled out a bladder issue and focused on the colon. It took five years to try to fix the colon, so looking back I understand why no one thought that the infection was slowly destroying my bladder. After the ileostomy was when I stared to notice a change in my bladder habits. I didn't give it much thought. I never mentioned it to my doctors or really thought there was anything wrong. All I knew was that the pelvic floor pain from the infection was getting worse and worse. My pain medications were no longer working. I couldn't even get out of bed or go anywhere. I must have gone to the emergency room that summer of 2011 five times until my colon doctor sent me to a gynecologist/urologist/pelvic floor doctor. I had surgery two weeks ago. She did a cystoscopy with hydrodistention. The pictures were not good news. She started me on Elmiron which is very expensive where I live. It coast $700.00 a month, which I'm not sure we can afford for a whole year. Plus I have to do the bladder washes twice a week. Now my pain doctor wants to start weaning me off all my narcotics. She thinks I don't need them anymore because I started the Elmiron. I told her it would take months maybe a year to even see any results and it may not work at all. So now my stress level is sky high.

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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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