- Nicole Cozean, PT, DPT, WCS
IC Myth #2: IC is Rare
The Myth: Interstitial cystitis is a rare condition.
The Truth: Interstitial cystitis affects up to 12 million people in the United States alone. Far from being rare, IC is more common than Alzheimer's disease, Type 1 Diabetes, and the number of people with a stroke or heart attack annually - combined!
Myth Origin: The origin of this myth comes from the history of under-diagnosing and misunderstanding the condition. From the time that Hunner's ulcers in the bladder were discovered, researchers believed that they were the hallmark of IC. It wasn't until 1978 that researchers from Stanford University proved that the vast majority of patients with IC do not have Hunner's ulcers. A formal definition of IC wasn't even created until 1987!
Studies performed prior to the condition having a definition would - naturally - severely underestimate the prevalence of interstitial cystitis. Doctors are trained, when they hear hoofbeats, to think of horses, not zebras - except that IC is actually the horse, and not the zebra!
One study, conducted in Finland, seems to be part of the origin of this myth. It looked at the number of people with IC in Helsinki in the 1960s, and concluded that only 0.01% of people had the condition, and that it primarily affected women. This study was a well-conducted study at the time, but was using a definition of IC that we would now consider hopelessly out of date!
The Facts: More recent population-based studies, using the modern definition of IC, have thoroughly debunked this myth. Studies done by the RAND research organization found that up to 6.5% of women and 4.2% of men have interstitial cystitis - more than 300 times higher than initially thought.
The Impact: The most insidious part of this myth is that it's self-perpetuating. Physicians learned that IC was rare in school, and now are hesitant to diagnose it. And, because patients weren't being diagnosed, it seemed that the condition was rare!
In fact, researchers found that - despite visiting an average of 3.5 doctors about their symptoms - fewer than 10% of patients with IC were actually given a correct diagnosis!
Spreading Awareness: We now know the truth, with important studies published in 2011 and 2013 and featured in the 2014 AUA Guidelines on Interstitial Cystitis. But many doctors remain unaware of the true prevalence of IC. They learned in medical school - if IC was covered in any detail at all - that it was an extremely rare condition and highly unlikely to be found in their patients.
It may take many more years, and a whole new generation of doctors, before this correct information permeates the medical community and IC receives the attention it deserves. That's why we all need to be part of the change, working to spread awareness of the condition for physicians and patients alike!
Read on to find out the truth about these myths, and feel free to join the online Facebook community Finding Pelvic Sanity for support and resources!
The AUA Interstitial Cystitis Guidelines Overview (Printable)
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy, Orange County's premier pelvic floor physical therapy clinic. Nicole was named the 2017 IC Physical Therapist of the Year, was the first PT to serve on the ICA Board of Directors, and is the author of the award-winning book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University.