The Myth: Interstitial cystitis is exclusively a bladder condition.
The Truth: IC is a complex condition, involving the bladder, pelvic floor, and nervous system. In many cases, the bladder is an 'innocent bystander' to a larger condition.
Myth Origin: This myth can seem like common sense for many patients. After all, pain often presents above the bladder or around the urethra, and urinary symptoms like urgency and frequency certainly seem linked to the bladder.
The prevailing theory around the myth is that wounds in the lining of the bladder allow urine into contact with the bladder itself, causing pain and the urgent need to void. This myth gained traction in 1914, with the discovery of Hunner's lesions in the bladder. When urologists found these wounds in the bladder lining, they believed them to be the hallmark of IC and the explanation for all symptoms - if a patient had IC symptoms but no lesions, they were referred to a psychologists, because the pain must be all in their head.
This thinking dominated the field for more than six decades, until researchers from Stanford University demonstrated the vast majority of patients with IC don't have Hunner's lesions or any discernible injury to the bladder lining - in fact, only about 10% do.
Debunking the Myth: This is one of the most important myths to debunk, because it directly affects how we treat interstitial cystitis. As one leader in the field puts it:
"Only a fraction of patients with the key symptoms of IC/BPS – urinary frequency, urgency, and pelvic pain – have ulcers within the bladder.
And many of the patients who are diagnosed with IC/BPS are found not to have bladder pathology as the name implies, but rather pelvic floor dysfunction.
That the bladder is often an innocent bystander to a larger process means that, as clinicians, we must be thoughtful and astute about our diagnostic process."- Dr. Kenneth Peters, Head of Urology, Beaumont University
There are many ways we know that IC is not exclusively about the bladder:
The majority of patients with IC have symptoms that include pain with intercourse, low back pain, hip/groin pain, or other symptoms that have nothing to do with the bladder.
If IC was simply a bladder condition, treatments like injecting a numbing solution into the bladder would be universally effective and provide at least short-term relief for all patients with IC. Instead, researchers have found even continuously delivering a numbing agent directly to the bladder is ineffective for many patients.
Many patients note a warm bath is one of the best things for their symptoms, while prolonged sitting, sexual intercourse, or certain types of exercise exacerbate their symptoms - though none of these factors should affect the urinary bladder.
In extreme cases patients have had the entire bladder removed, only for many of the symptoms to persist even after the radical surgery.
The Pelvic Floor Connection: The pelvic floor is the series of muscles that literally make up the floor of the pelvis. They control urination, allowing you to go when you want to go. These muscles are clenched to hold in urine, and must actively relax to allow urination to occur. When these muscles are overtaxed, as with the frequent urination of IC, they become strained and tight. They can refer pain and symptoms throughout the pelvic floor, including to the bladder, hips, back, genitals, and inner thighs.
Pelvic floor physical therapy, which addresses these tight muscles, is actually the most proven method for treating IC (according to the American Urological Association), with more than 70% of patients reporting significant improvement with physical therapy.
The pelvic floor is the setting for interstitial cystitis, and dysfunction here can cause or exacerbate any of the symptoms of IC - pelvic pain, urinary urgency/frequency, low back pain, pain with intercourse, and more.
The nervous system is also a major part of IC - in fact, one of the earliest names for the condition called it a 'bladder tic.' Studies have shown that chronic pain can actually rewire the brain to expect and anticipate painful sensations. Instead of feeling a feather lightly tickle over your arm, your brain begins to interpret the same feeling as excruciatingly painful.
One of the major goals of a treatment plan is to reverse this 'nervous system upregulation' and 'reset' the nervous system to normal reactions.
Impact of the Myth: The biggest negative impact of this myth is that both patients and practitioners are tempted to try single, ineffective solutions that concentrate solely on the bladder, rather than a holistic treatment plan. Diet, lifestyle changes, reducing stress, pelvic floor physical therapy, stretching and self-care, oral medications, bladder instillations, and complementary medicines can all be used to help control interstitial cystitis and allow patients to recover. By focusing solely on the bladder, we miss out on all other avenues of healing.
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!
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.