Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: 4usully, 45-54 Female (Patient) Published: January 29

Before my diagnosis of interstitial cystitis (IC), I had suffered with intermittent and sometimes unbearable pressure in my bladder. I thought it was due to the fact that I was diagnosed with a large fibroid in my uterus. Well, soon thereafter, I started experiencing pain, and urgency. Sometimes, I even had stabbing pains in my urethra. I was told by a urologist that it was most likely IC, and that I needed to have a cystoscopy and hydrodistention performed. I have found that certain foods make the pain worse, so I avoid them. I am just living with it the best I can; along with fibromyalgia, and chronic pain disorder.

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Comment from: Blessd4lif, 45-54 Female (Patient) Published: September 23

I had recently had abdominal surgery and came home with a catheter in. After the catheter had been removed, I started passing blood. I went to the doctor and had lab tests done and all were normal. The bleeding stopped but I started having to go to the bathroom more and more often. One night it was every 6 minutes. Anyway, interstitial cystitis (IC) was a new diagnosis at the time. I went to the urologist and he told me that I had IC after he'd looked at my bladder.

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Comment from: SmokyMtnLady, 55-64 Female (Patient) Published: September 17

After suffering with reoccurring bladder infections and painful bladder, and visiting 4 different gynecologists and urologists I was finally diagnosed with interstitial cystitis (IC) in 2004. The last urologist I visited, instilled my bladder with the potassium solution to test for IC and I felt the pain from the solution. For me, the IC causes bladder spasms, along with symptoms of fullness, soreness, and tenderness in the bladder. I do not get the extreme urge to urinate, nor do I get extreme pain. However, I do have frequency, along with a dull throbbing pain in the bladder and pubic bone area. When I have a flare-up, the tenderness and soreness is so severe I can hardly raise myself out of bed or up from a sitting position. I get very sore and very tender, even radiating to my back! Taking hydrocodone seems to calm down the symptoms. But, Elmiron has been a god-send for me, along with taking amitriptyline and Atarax, and taking warm baths, or using a warm moist cloth on my pubic bone/bladder area. I rarely need the hydrocodone any longer. Luckily, I seem to go in remission for longer periods of time than when I was first diagnosed. My last remission was for 5 years. I watch my consumption of caffeine and acidic foods. Sitting for long periods of time causes my symptoms to be more severe.

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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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