I've always been passionate about treating interstitial cystitis. Perhaps no other condition has as much misinformation and confusion surrounding it, and so many of my patients struggled to even be diagnosed. It prompted me to join the Interstitial Cystitis Association Board of Directors, and eventually led to writing The Interstitial Cystitis Solution in an attempt to help patients have all the important information about the condition in one place.
One of the most important studies about IC was conducted by the RAND corporation, and is known as the RICE (RAND Interstitial Cystitis Epidemiology) study. Several different papers have been published with this data, which surveyed more than 130,000 households to learn more about the prevalence of IC. Some of the results they found were incredible.
More than 6.5% of women in the United States have Interstitial Cystitis
In the most sensitive set of questioning, the authors found that more than 10 million women in the US alone are struggling with IC - that's about 1 in 15! Just about everyone in the country knows someone who struggles with IC symptoms, even if they remain undiagnosed. The study showed the condition is far more common than originally thought.
On average, the women interviewed had seen 3.5 doctors for their symptoms!
When they called, the interviewers asked about pelvic pain and bladder symptoms like urgency and frequency of urination. Of the women who reported having those symptoms, nearly 90% had gone to the doctor with their complaint. On average, they had been sent to three and a half doctors - just think about that! A few had obviously been to see only their primary care doctor, which means that some women have probably been to 7 or more doctors for their condition! Yet....
Less than half (46%) had even received a specific diagnosis!!
After seeing 3.5 doctors each, more than half of the women hadn't even gotten a diagnosis! Even one that was wrong!! Can you imagine having 3 doctors tell you that they have no idea what is wrong, and offer no hope or solutions for treatment?
But finally, the most insane statistic of all...
Less than 10% of the women were correctly diagnosed with interstitial cystitis!!!
After seeing all those doctors, with symptoms that are classic IC, fewer than 1 in 10 women had been correctly diagnosed (and yes, that deserves three exclamation points)! Common mistaken diagnoses included urinary tract infection (one of the first things ruled out with IC) and pelvic prolapse. Both of those conditions have entirely different treatments than IC, meaning that more than 90% of women with IC were not even being given the chance to get better.
Unfortunately, this is why it is so important that patients take control of their own health and condition, and not simply assume that the healthcare system will take care of them well. This field, relatively new, is fraught with misinformation and with outdated theories. It wasn't until the mid-1980s that IC was even recognized as a severe and debilitating condition. Prior to that, it was thought of as "women's hysteria" - some of the current medical school professors grew up believing this pain was "all in their heads." Things are changing, but slowly - you always, always, always need to do your own research and be your own advocate!
Additional Resources:
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy, Orange County's premier pelvic floor physical therapy clinic. One of only 270 PTs to be board-certified in the pelvic floor, and the first PT to serve on the ICA Board of Directors, Nicole is the author of the acclaimed and best-selling book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University. The PelvicSanity blog focuses on presenting practical, positive information to help patients beyond the walls of Nicole's clinic.