Interstitial cystitis is a chronic pain condition characterized by both pelvic pain and urinary symptoms. It’s diagnosed by unexplained pain or pressure that is perceived to be related to the bladder, and affects more than 12 million Americans. It’s often described as the sensation of a urinary tract infection, but without any bacterial infection. Many patients report severe pain, often more intense than that associated with bladder cancer, and up to 85% of patients have accompanying pelvic floor dysfunction.
Pelvic floor physical therapy is the most proven treatment for interstitial cystitis. It’s recommended by the American Urological Association (AUA) as a first-line medical treatment in their IC Guidelines, and is the only treatment given an evidence grade of ‘A’. Furthermore, it’s the sole intervention that provides sustained relief; bladder treatments and oral medications must be continued indefinitely to provide benefit, if they work at all.
Research has demonstrated that at least 85% of patients with interstitial cystitis also have pelvic floor dysfunction. In fact, many of the symptoms of IC can only be explained by the pelvic floor. The majority of patients report painful intercourse, low back pain, hip pain, or constipation accompanying the condition; symptoms that have nothing to do with the bladder.
Despite this, many patients don’t learn about pelvic floor physical therapy for years after their diagnosis. Many have to discover pelvic PT for themselves, or their doctor only mentions physical therapy as a last resort. At PelvicSanity, we just published a study of our interstitial cystitis patients in the International Pelvic Pain Society (IPPS) meeting, reporting on both patient outcomes and their experience with the medical system following their IC diagnosis.
In following the results for thirteen consecutive patients with an interstitial cystitis diagnosis, patients reported more than a 60% improvement in pain, symptom bother, and how much symptoms limited their daily activities. On average, their pain level was at a 7.6 out of 10 upon initial evaluation, which fell to 2.6 after treatment.
Patients saw a relatively rapid improvement in their symptoms with treatment. Over half (54%) reported an improvement in symptoms within their first three visits; 31% saw their first improvement in visits 4-6 and 15% required ten or more visits for subjective improvement. Importantly, all patients in the study reported a better understanding of their condition and feeling more hopeful for recovery after their initial evaluation.
More than half of these patients reported seeing five or more medical doctors for their condition prior to beginning pelvic floor physical therapy, and had been prescribed multiple medications and undergone bladder treatments without success. However, only a single respondent (7.7%) believed they had been referred to pelvic PT by their doctor at the appropriate time. Nearly half (46%) had to find out about pelvic floor physical therapy for interstitial cystitis themselves, while the remainder felt they had been referred by their doctor far too late, as a last resort.
With more than 12 million women and men suffering with this condition in the United States alone, increasing education – for both doctors and patients – is vital. In our upcoming course for physical therapists in treating interstitial cystitis (April 28-29, 2018 in San Diego), we’ll focus on the most important physical therapy techniques for IC, home stretching and self-care programs, and information to guide patients in creating a holistic treatment plan