Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: MissyA, 13-18 Female (Patient) Published: January 05

I had about 3 epidurals years ago, and they helped for a while, and no side effects except for a bad headache for days. But I am getting ready to start with them again and they have changed a lot since I had them back in 2000. I was put to sleep for mine. So I am a bit nervous. And I have had the spinal fusion done, which gave me nearly 12 years of pure relief and almost a normal life, except having to watch what I lifted, etc. If this new course of epidurals do not work, it is back for another fusion for me.

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Comment from: Lynn, 55-64 Female (Patient) Published: March 20

I have had pelvic pain for years now and it really bothers me that if I really have interstitial cystitis (IC), when I had a colonoscopy the gastroenterologist only found benign polyps, which he removed. My gynecologist did a transvaginal ultrasound and they could not find my ovaries and my family doctor sent me to the urologist and right away she said I know what your problem is, you have interstitial cystitis. She immediately put me on Elmiron 3 times a day and she never did any testing on me to give me that diagnosis. I am not happy with the Elmiron because it is very expensive and I do not like taking a medication that may not be the right one for me. I have discussed this with her and she is determined I have IC. Now this is a thin blood thinner and you have to go off this for a week if you are having surgery and I just had a severe flare up that I thought was a bladder infection which my family doctor took a urine sample and it showed no bacteria, but lots of inflammation.

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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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Interstitial Cystitis - Describe Your Experience Question: Please describe your experience with interstitial cystitis.
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