The Myth: The pain and symptoms of IC are 'all in your head.'
The Truth: Even though many patients are told this at some point in their IC journey by a medical professional, IC is a complex chronic pain condition affecting more than 12 million people of both genders in the United States alone, and is certainly a real and physical condition.
Myth Origin: There is no specific, concrete origin of this myth, but several factors contributed to its development. This myth made it's way into the medical field as well. As late as the 1970s (when many doctors today were in school), they were being taught that interstitial cystitis was a psychosomatic condition of 'hysterical' women.
“A medical entity [IC] as confusing, poorly understood, baffling etiologically, and taking up as much space as it does in the textbooks on urology should merit a few words from a psychiatrist…it makes a thoughtful physician wonder about the possibility of a mildly masochistic woman, i.e., destructive need in the female to suffer and to “have trouble with” her genitourinary apparatus.” – Urology, Volume 3 (1970)
To this day, we still see patients whose urologist or pain management doctor has written that the only treatment needed is a visit to a psychologist for chronic pelvic pain!
The origins of this myth are complex. For decades, IC was thought to be a condition that affected the bladder lining, so patients with symptoms but without Hunner's lesions must be making them up.
The fact that it was (incorrectly) thought that IC was a 'woman's condition' also certainly plays into the dismissal of pain; even today, men and women are treated differently by the medical profession when they complain of the same symptoms.
This is also a confusion of cause and effect. As with all chronic pelvic pain conditions, IC does have an impact on mental state. Stress has been shown to increase pain levels, and a long experience with pain - regardless of the source - can actually rewire the brain to be more sensitive to painful sensations.
Debunking the Myth: By now, hopefully it goes without saying that IC is absolutely and completely a real, physical condition that causes pain and urinary symptoms.
A major turning point in the fight to legitimize interstitial cystitis was the foundation of the Interstitial Cystitis Association in 1984 by a medical student, Vicki Ratner. After Dr. Ratner and the ICA pushed for basic research into the condition, the National Institutes of Health finally issued a formal definition of the condition in 1987. It wasn't until 2011 that the American Urological Association issued it's first guidelines on the treatment of interstitial cystitis, which were updated several years later.
It's also important to recognize that mental and emotional health can be an important part of your IC journey. Addressing mental health head-on does not suggest that there is not a physical condition, but acknowledges that chronic pain does have an effect on the mind. For example, researchers have now shown that experiencing stress does increase pain levels; taking steps to reduce stress in your life and caring for your emotional health can actually reduce pain and physical symptoms.
For example, both Cognitive-Behavioral Therapy (CBT) and supportive psychotherapy were shown to decrease pain and symptom levels in chronic pelvic pain patients. Meditation has been repeatedly demonstrated to reduce both the pain experienced and how much it impacts your life. Some studies have even showed that regular exercise was just as effective as antidepressant medication for helping with depressive symptoms. Taking care of your mental and emotional health can have real benefits for your physical health and IC symptoms.
Impact of the Myth: This myth has had one of the largest negative impacts for patients with IC. For decades, patients were dismissed and trivialized by all but the most knowledgeable specialists in the field.
Even today, the stigma of chronic pain still lingers. Many doctors who are still practicing were trained in an era when IC thought to be primarily a mental condition. Even though they may know differently now, it is difficult to completely eradicate that initial skepticism. Recognize the impact that mental health can have on IC, but don't let anyone - ever! - tell you that it's "all in your head.
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!
Additional Resources
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.