My third blog was going to be a little bit more information about me, but that's going to have to wait because on Monday night I saw Shannon Cohn's documentary "Endo What?" and IT WAS AMAZING. Not only was the movie itself incredible, but the panel of specialists who spent an hour discussing endometriosis after the film was top-notch. Shannon's resume and welcoming smile are a killer combo of super smart accomplished lady and the ultimate genuine advocator. She has created a heartfelt and comprehensive film that is SO necessary for increasing endometriosis awareness, and I encourage you all to go watch it!
Endometriosis is a diagnosis that I've often encountered as a pelvic floor PT and it's been a challenge for me as a clinician because of it's complexity. It's a condition that affects approximately 176 million women in the US and yet is still highly misdiagnosed, improperly treated, and poorly managed by our general healthcare system. It's common for women to experience 8-10 years... yes YEARS... of pain and see an average of 6-8 doctors before proper diagnosis. As you can imagine the implications of living with this type of pain can be severely debilitating and all too familiar for the many women whose lives are affected by "endo". It was these statistics along with personal experience that inspired Shannon to make this film. She aims to educate providers and patients, spread the word amongst communities, empower women who are seeking care, and improve the standards of care and quality of life for those with "endo" through her film. Stay tuned for a future blog specifically about endometriosis, but for now I want to talk about why I was so impressed with "Endo What?" and the panel on Monday night.
The documentary was educational, personal, critical, and emotional. I loved it because it presented endometriosis as a disease requiring an INTEGRATIVE AND HOLISTIC APPROACH to diagnosing, treating, and preventing. As a "holistic PT" and a yogi I greatly appreciated the film pointing out the multiple disciplines required for effective disease management. My practice emphasizes the need to treat consciously and holistically and this idea is echoed throughout the film. Shannon uses patient and practitioner interviews to demonstrate the multi-factorial causes of endometriosis (from genetics to stress to inflammation to environmental toxins, etc.). The multi-factorial etiology of the disease makes for difficult treatment as anyone with endo knows, but the interviews in the film and from the panel did an excellent job of tackling what some of those treatments should be.
Here are some of the highlights from the panel after the screening:
Shannon Cohn, director and producer, and Emilie Sydney-Smith, endometriosis advocate & CEO of Unearth Corp, facilitated the panel. Both shared a little bit about their personal stories and experience living life with endometriosis. They each had a unique perspective on how and why this film has become their passion project. Shannon is on a mission for endo awareness, early detection, finding a genetic link, and early education about the disease to providers and women!
Dr. Iris Orbuch, endometriosis excision surgeon from NY, shared her years of experience caring for those with endometriosis. She recommends thorough and complete excision of endometriosis tissue with a surgeon who has a great track record and a lot of experience as the primary medical intervention. She believes in sparing the reproductive organs whenever possible and that laparoscopy should be both diagnostic and therapeutic. She points women to Nancy'sNook (http://endocenter.org/NancysNook.htm ) as the number one resource to find competent providers familiar with endo.
Dr. Lawrence Orbuch, Iris' husband and board certified Obstetrician Gynecologist, also advocated for finding competent physicians familiar and experienced in endometriosis treatment. The couple insisted on patients advocating for themselves by always asking potential physicians how many surgeries they have performed and what their outcomes are. If a physician can't or doesn't want to answer these questions then it's probably best to move on to one who can. Additional resources they recommend are http://endowarriorssupport.com/ and http://www.endo.org/.
Dr. Sheldon Jordan, a neurologist and pain management specialist, and Stephanie Prendergast, physical therapist in Los Angeles, teamed up in duet of responses to the panel. These two often work together with complex pelvic pain patients and stress the importance of finding a collaborative multi-disciplinary team. Dr. Jordan emphasized timing of interventions as being particularly important in managing those with endometriosis especially when it comes to hormone management. Finding the appropriate pain, pharmacologic, surgical, nutritional, physical therapy management a bit like a puzzle. Stephanie often acts as the "CEO" in coordinating this puzzle for her patients and places a great importance on finding the right team of providers.
Karen Roth, MS, NCN is a holistic nutritionist who is featured in the film and on the panel Monday night. She advocates for food sensitivity testing in order to remove foods that are causing inflammation for her patients. She also recommends purchasing the highest quality food possible and minimizing environmental toxins by cleaning up your household products. She points patients to http://www.ewg.org/ to help assess and clean up their "toxic loads."
Lastly I was touched by the audience and women with endometriosis who attended the film in great spirit. They asked thoughtful questions about how to best be prepared for doctor's visits and how to be their own best advocates. The panels' response was a resounding, "come prepared with your medical history typed and don't be afraid to ask questions/demand information from your doctor."
I could tell from the energy in the room this film is going to change lives! Check out the film at endowhat.com and help Shannon meet her goal of getting this movie to all women with endo and to all healthcare providers who might be on the front lines of identifying and managing this disease.