March 2023
This month, in honor of Endometriosis Awareness Month, we talked with Sallie Sarrel, PT, ATC, DPT, and Founder of the Endometriosis Summit, on her personal endometriosis journey, the shortcomings of disease diagnosis, and what education and approaches are needed for healthcare providers to properly understand and treat this complex condition.
Dr. Sallie Sarrel is changing the world one pelvis at a time. She is a doctorate of physical therapy specializing in endometriosis and pelvic pain. Sallie lectures nationally on endometriosis. After many years of being frustrated with the current standard of care for endometriosis, Sallie partnered with Dr Andrea Vidali to create The Endometriosis Summit. Now in its fifth year, The Endometriosis Summit is among one of the largest educational entities for endometriosis in the United States. It features an Annual Conference, held in person and virtually, a podcast, a webinar series and extensive education for patients, physical therapists, practitioners, and surgeons.
SHWI: You’re a pelvic floor therapist and someone who was diagnosed with endometriosis (endo). Tell us more about your personal story and what led you to founding The Endometriosis Summit?
My symptoms began with my first period-the cramps, the heavy bleeding, massive stomach aches and terrible bloating. Like most teenagers, I normalized my pain, especially when I repeatedly went to doctors who told me my pain was normal or fat shamed me. My issues only got worse as I got older, eventually having bloating that was so bad that I needed multiple wardrobes. Even as someone who’s entire family was in medicine and as a physical therapist, I had never heard the word endometriosis. During my training to become a pelvic physical therapist, endometriosis was mentioned for less than 5 minutes, and it was framed as just an infertility disease that stemmed from the period. By the time I was 35, my pain was all consuming, I had horrendous leg pain, terrible stomach symptoms, passing out during my period and intractable back pain. In one year, I saw 9 different doctors, all of whom told me that endometriosis would only affect me if I was trying to get pregnant —all of them. After finding a specialist online one night, I paid out of pocket (because insurance refused to pay) for a diagnostic surgery. That surgery was 6 hours long as they excised endometriosis from nearly all of my pelvis and much of my abdomen. I would endure 7 more surgeries including one where an ovary was taken without my consent just to see if it would stop my pain, which it didn’t. I went into menopause very young and I still struggle today with nerve pain because my disease did a lot of damage during the 23 years it went undiagnosed.
I didn’t want anyone else to endure what I had been through. I developed a pelvic physical therapy practice designed to treat endometriosis and have traveled the world teaching that endometriosis is a whole-body disease that requires an integrative approach from surgery to physical therapy to nutrition.
I have a strong passion to teach people with the disease that healing is a journey, one that needs to include excision surgery for the endometriosis but, also treating the multiple generators of pain like pelvic hernias and painful bladder syndrome. People with endometriosis on average seek diagnosis for 8-10 years. Many don’t know what endometriosis is. The gold standard in care, excision surgery, is not readily available, and many doctors and physical therapists need to understand the disease better as well. I partnered with Dr. Andrea Vidali to create an educational entity to empower the endometriosis community.
SHWI: This month is Endometriosis Awareness Month. Endo is somewhat of an elusive and difficult-to-treat diagnosis and one that has become increasingly more common among females. Please explain more about this disease and share why you think more women are experiencing this inflammatory condition.
Endometriosis is when tissue similar to, but not the same as, the uterine lining is found throughout the body. It is much more than a reproductive disease, affecting the bowel, and the bladder, spasming the pelvic floor. Some have the disease in their liver or their lung. For a disease this common, most medical students only get 20 minutes of education on the disease. Education to the average gynecologist is limited to inadequate and outdated surgical techniques and often, the pharmaceutical companies dominate the research and the dissemination of endometriosis education. Additionally, people with endometriosis have total body symptoms. Many see GI specialists, urologists, general practitioners—all to have their symptoms brushed off or pushed onto the gynecologist who may or may not understand the intricacies of the disease. Compound this with an underlying belief that pain in the genitals or around the period should be unmentionable and that pain is often minimized as being in people’s head and you have the international health crisis that is endometriosis.
SHWI: What is your approach to treating endometriosis pain with your patients? Furthermore, what would you like non-PT healthcare providers to know about pelvic physical therapy and endo?
Pelvic Physical Therapy, or Pelvic therapy because now we have a lot of our OTs (Occupational Therapist) colleagues joining us, can be an indispensable tool in managing pelvic pain and endometriosis. We are trained professionals who are able to usually spend an hour with each patient to truly hear them and truly evaluate their issues. From the top of the head to the tip of the toes the whole body is connected. Pain in the pelvis could be driven by bones, muscles, ligaments, nerves, or fascia. Endometriosis is an inflammatory disease and pelvic physical therapy can help manage the symptoms. Oftentimes, endometriosis causes reactive pelvic floor spasms and tightening; then those spasms continue the cycle of generating pain. Even after endometriosis has been removed through excision of endometriosis, the body still needs care to handle the reactive issues that remain.
Also, it is important to understand that a hysterectomy does not cure endometriosis. Actually, it doesn’t treat it at all, it treats adenomyosis. Endometriosis by nature of the disease is OUTSIDE of the uterus so removing the uterus does nothing for the disease. You have to completely excise the disease wherever it is in the body. Just removing the uterus doesn’t attend to the actual lesion of endometriosis.
SHWI: What is some of the most important research that you think needs to happen in support of understanding and treating endometriosis? What are your hopes for future research?
Currently, in order to be diagnosed with endometriosis, you need surgical pathology. Scans are not reliable all the time to diagnosed endometriosis. Coming down the pike are blood marker tests for endometriosis. Those discoveries may change endometriosis for so many.
Overall, I hope that the research in our community begins to stem from unbiased and unmotivated sources. The Department of Defense in the US has made great progress in its funding for endometriosis research.
Resources
https://www.endofound.org/endometriosis-research-funding-bill-passed-in-congress