Patient Comments: Interstitial Cystitis - Symptoms and Signs

What were the symptoms and signs of your interstitial cystitis?

Comment from: 65-74 Female (Patient) Published: March 09

I was diagnosed with IC (interstitial cystitis) in January, 2015. The pain I was experiencing was terrible. I had pain in my urethra, my bladder and in my rectal area. Once I was diagnosed with IC, I was given 2 treatments. One was pain medication and the other was RIMSO treatment (which is a solution inserted into my urethra). Neither of these treatments give me total relief. The pain medication does work at the time but I am requiring to take it more frequently and more dosage. I am at wits' end to find ongoing relief. I understand what each person with IC is going through.

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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: 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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