At the end of the first appointment with a new IC patient, after we've begun treatment and shown them how much the pelvic floor is contributing to their symptoms, we almost always get some version of this question:
"Why didn't my doctor tell me about physical therapy for IC years ago?!"
In fact, in a study of our patients, only 14% felt they had been referred to PT at the right time by their doctor! It was much more common for them not to have had to find PT on their own (43%) or to have been referred far too late as a 'last resort' after the doctor didn't have success with their medical treatment (43%). Patients are shocked to know that the American Urological Association recommends physical therapy for IC in the first line of medical treatments, and consider it more proven than bladder instillations, Elmiron, or any other treatment!
Part of our mission is to help educate the urologists, urogynecologists, gynecologists, and other doctors about the presentation and treatment of IC, to help make sure patients are diagnosed more quickly and given access to the best possible care. A recent article from Dr. Kenneth Peters, the Chairman of Urology at the Beaumont School of Medicine, written to OB/GYNs across the country, is a fantastic step in educating doctors about this condition.
"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 (emphasis added)
In his introduction to the article, Dr. Peters starts by telling doctors one of the most important things that we tell patients in The Interstitial Cystitis Solution - you have to look beyond the bladder. Urologists, who generally are the ones diagnosing IC, are often entirely focused on the bladder. Of course, that makes sense - that's their entire field! But IC is a complex condition, entangling the bladder, urethra, pelvic floor muscles, fascia, and entire region. As Dr. Peters says, the bladder is "often an innocent bystander", and no amount of direct bladder treatment will be effective in eliminating symptoms.
"Hunner’s lesion IC is pretty straightforward and clearly a bladder disease. However, in recent years the term IC/BPS has been broadly used to describe women who have symptoms of pelvic pain, urinary urgency, and frequency, but no true bladder pathology to explain their symptoms."
- Dr. Kenneth Peters
Dr. Peters draws a very clear distinction between Hunner's lesion IC, where there are actual wounds to the bladder wall, and unexplained pelvic pain. With Hunner's lesions, toxic urine comes into contact with the bladder lining, resulting in severe pain. This also explains pain as the bladder contracts after voiding, as the injured tissue touches other areas of the bladder and irritates the wounded tissue.
As Dr. Peters explains, "eradicating the ulcers...often results in marked and immediate improvement in bladder pain." While this procedure may have to be repeated, it is well-understood.
Unfortunately, nearly 90% of patients diagnosed with IC do not present with Hunner's lesions, making treatment much less clear.
"It has become too easy for the average clinician to apply a label of IC/BPS to a patient complaining of pelvic pain; this often results in the patient undergoing invasive and nonhelpful therapies such as cystoscopy, hydrodistension, urodynamics, bladder instillations, and other bladder-directed therapies.
More than 20 years of research supported by the National Institutes of Health and industry have failed to show that bladder-directed therapy is superior to placebo. This fact suggests that the bladder may be an innocent bystander in a larger pelvic process. As clinicians, we must be willing to look beyond the bladder and examine for pelvic floor issues and other causes of patient’s symptoms and not be too quick to begin bladder-focused treatments."
- Dr. Kenneth Peters
Unfortunately, most urologists and doctors jump straight to bladder-focused treatments, excluding all other potential treatments - even though the research shows that the best results are obtained with a holistic treatment plan. Almost all of our patients have also been through unnecessary procedures like cystoscopies, hydrodistensions, and other procedures that may actually make symptoms worse.
We’ve found that identifying and treating pelvic floor dysfunction with modalities such as pelvic floor physical therapy with intravaginal myofascial release, intravaginal valium, trigger point injections into the levator complex, pudendal nerve blocks, and neuromodulation can frequently resolve or significantly lessen the patient’s pain and bladder symptoms."
- Dr. Kenneth Peters
Both the research and our personal experience at PelvicSanity with interstitial cystitis patients bear this out. Clinical trials have shown that pelvic floor physical therapy is the most proven method for alleviating IC symptoms, providing sustainable symptom relief.
At PelvicSanity, patients with IC report significant improvements in pain, the 'bother' of symptoms, and in how much their condition limits their daily life. On average, the pain of IC was reduced from more than a 7 out of 10 (excruciating) to a 2 out of 10 with physical therapy.
Dr. Peters also notes the importance of combining physical therapy with other management tools - we often work with our local specialists to provide muscle relaxants, trigger point injections, nerve blocks, and neuromodulation which can help enhance the effect of pelvic floor physical therapy.
There's no single, simple, easy answer for IC. It's a complex condition, and requires a holistic approach to heal. You need to address both the bladder and pelvic floor, and work with both your doctor and physical therapist. There's also so much you can do yourself, from identifying your trigger foods to stretching and self-care techniques to reducing stress and helping your body to relax.
Success is possible; thousands of people live healthy, happy lives with IC - so can you! Success lies at the center of your physical therapist, your doctor, and your own self-care.
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.