Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: hana r, 25-34 Female (Patient) Published: December 16

I had been diagnosed with UTIs (urinary tract infections) for about 6 years before finally being put into the emergency room from bad pain. They checked my urine and found a large amount of blood but no bacteria. So finally I was able to go to a specialist to get diagnosed with interstitial cystitis last year. I had to have my uterus checked first as well and it was all clear. They finally could diagnose me with a cystoscopy and found that a large amount of my bladder wall was covered in lesions and was bleeding. My symptoms were frequent urination and urgency, heavy feeling in my bladder area, pain from the front to lower back, feeling tired and sick until I emptied my bladder, needing to go again soon after, blood in urine and no bacteria.

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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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