Interstitial Cystitis - Symptoms and Signs

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What are the signs and symptoms of interstitial cystitis?

The symptoms of PBS/IC vary greatly from one person to another but have some similarities to those of a urinary tract infection. They include

  • decreased bladder capacity;
  • an urgent need to urinate frequently day and night;
  • feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum (the area between the anus and vagina or anus and scrotum) which may increase as the bladder fills and decrease as it empties;
  • painful sexual intercourse (dyspareunia);
  • discomfort or pain in the penis and scrotum.

Most people suffering from PBS/IC have both urinary frequency/urgency and pelvic pain, although these symptoms may also occur singly or in any combination. In most women, symptoms usually worsen around the time of their periods. As with many other illnesses, stress also may intensify the symptoms, but it does not cause them. The symptoms usually have a slow onset, and urinary frequency is the most common early symptom. As PBS/IC progresses over a few years, cycles of pain (flares) and remissions occur. Pain may be mild or so severe as to be debilitating. Symptoms can vary from day to day.

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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: 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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