February 20, 2019
ENDOMETRIOSIS, HEALTH, MEDICAL CONFERENCE, NUTRITION, PATIENT ADVOCACY, PELVIC HEALTH, PELVIC PHYSICAL THERAPY
Heather Guidone is the Surgical Program Director for the Center for Endometriosis Care in Georgia. She will be the keynote speaker at The Endometriosis Summit. Heather Guidone has been a central figure in the endometriosis and the pelvic health community for nearly 30 years. She is internationally known as a subject matter expert on the disease and for her tireless work on behalf of the worldwide endometriosis community.She writes:
“The literature on endometriosis is extensive, though often contradictory or inadequate…” So wrote Olive & Schwartz1 25 years ago. Today, that still rings true, with the complexities of endometriosis, a multidimensional condition, remaining poorly elucidated. Affecting 176 million individuals worldwide from every demographic at staggering public costs, misinformation runs rampant and remains ubiquitous; inaccuracies continue to be shared in perpetuity from doctors to patients, parents to adolescents, and media to the public – some myths persisting even from the time of my own diagnosis more than 30 years ago. Girls today are experiencing many of the same obstacles present when my own journey began; despite the passage of nearly a century and extensive contrary research, adherence to outdated dogma, like Sampson or retrograde theory, continues to lead to ongoing ‘justifications’ for missed diagnoses and poor quality therapies.
Much of the discourse surrounding etiology is ardently debated, with the definitive cause(s) of endometriosis remaining elusive – as is a universal cure. Likewise, though endometriosis research may seem omnipresent, much of it is redundant in nature and lacking in translational benefit. The bulk of current efforts are now largely being directed towards pharmaceutical management even in unconfirmed diagnoses, which fails to provide meaningful answers or long-term solutions for the millions struggling. Moreover, where there was once a vacuum of information, the pendulum has now swung in the opposite direction, with society’s impressions of endometriosis now being largely informed by unattainable ‘celebrity’ experiences of specialists on demand, million dollar ad campaigns for drugs that are vastly unimproved over their predecessors, and influencers who champion stagnant treatments and long debunked myths. The result is a continuation of what we have experienced for generations: poor support and understanding of the patient experience, lack of unified advancement as a global community, and inequitable access to quality care.
The disease also remains largely linked to menstruation, despite affecting menstruators and non-menstruators alike, thus creating additional challenges for those outside the traditionally female-identified space. Correspondingly, although we have evolved over the past century, much of society’s derogatory view of menstruation, including within the political sphere (“…blood coming out of her wherever...”), remains virtually unchanged. As a result, menstrual pain and other symptoms of endometriosis, including and perhaps especially those of extrapelvic, non-menstrual presentations, are still far too often ignored or missed. It is critical to increase factual, timely disease awareness and articulate effective strategies to forge better pathways forward for the condition for all who are impacted. It is imperative that individuals know when, where and how to obtain help when symptoms first arise, and it is vital that the public, including but not limited to, legislators, gynecologic and women’s health institutions, hospital administrators, gynecologists and subspecialists not only become involved in the care and education of patients, but also ensure a seat at the table for them.
Despite the seemingly stark outlook, all is hardly lost. There are many physicians, researchers, citizen scientists, advocates and activists hard at work on these issues every day who continue to challenge the enduring confusion, inaccurate beliefs and negative views on endometriosis. The future is full of hope and promise. There has never been a more important time for your voice to be heard. Come be a part of progress at The Endometriosis Summit on March 3, 2019. Learn more: http://theendometriosissummit.com
1. Olive D, Barrie Schwartz L. Endometriosis. N Engl J Med 1993; 328:1759-1769.