Different Names for IC
Until we have a definitive, commercial test for interstitial cystitis (IC), how to define it and even what to call it remain up in the air. In the past few years, researchers have suggested three new ways of defining IC and new names to go along with them.
“Interstitial cystitis,” the name introduced in 1887, was a “you know it when you see it” disease that experts treating it generally agreed on. But to be sure they were including similar patients in studies, researchers developed a restrictive “research definition.”
Patients had to be 18 or older and had to have pain related to the bladder or urinary urgency for at least nine months. Cystoscopy with hydrodistention had to show the bladder had either Hunner’s ulcers or many areas with glomerulations (pinpoint bleeding). Patients also had to have a daytime frequency of at least eight times and needed to get up in the night to void. Usually, studies excluded men because of potential confusion with chronic prostatitis/chronic pelvic pain syndrome, benign prostatic hyperplasia (BPH or prostate enlargement), and prostate cancer.
Many clinicians took those strict criteria to be the accepted definition of IC, but it left out 60 percent of the people that experts agreed had it. It left out those whose IC was new, men, children, those who felt “pressure” instead of pain, those who slept through the night, and those who didn’t show glomerulations or Hunner’s ulcers.
Painful Bladder Syndrome
Bladder Pain Syndrome
In 2007, a group of European urologists proposed abandoning this term for “bladder pain syndrome.” The term was just as inclusive but could be further refined with one of 16 different combinations of letters and numbers indicating the cystoscopic and biopsy studies done and their results. Nevertheless, none of these studies or findings, such as Hunner’s ulcers or mast cells seen in bladder tissue, is a definitive diagnostic test for everyone with the condition.
Hypersensitive Bladder Syndrome
In 2007, Japanese urologists proposed another name, “hypersensitive bladder syndrome.” The term was defined in the East Asian clinical guidelines published in 2009. It is an even more inclusive term than the previous two, bringing patients who don’t necessarily report pain under the umbrella and even including patients who may not have extraordinarily frequent urination or frequent urination all of the time.
Because there are now so many names for the condition, the ICA will continue to refer to it as “IC” in its publications until a definitive test becomes available. There are a number of candidate tests being researched now, and when one proves to be reliable and becomes available, it will help pin down what IC really is and what to call it.
Revised Wednesday, February 18th, 2015