For a condition that affects an estimated one in 10 women of reproductive age,1 a lot of myths and misperceptions swirl around endometriosis. Here, three women share their perspectives on what endometriosis myths need to be dispelled.
Myth 1: You Shouldn’t Talk about Endometriosis
“People are so scared to talk about endometriosis, but we’re living in a different generation and culture, and we should not be afraid to talk about this. The more knowledge you have, the better you are at educating yourself and the people around you, so they have a better understanding of what you’re experiencing.” – Julianne Hough,* actress, singer, dancer and Emmy Award-winning choreographer and SpeakEndo spokesperson
Myth 2: Endometriosis is Uncommon
“I think a lot of physicians, particularly non-OB-GYNs, don’t realize how common endometriosis really is. Approximately 10 percent of women of reproductive age have endometriosis. That’s a lot of women! So endometriosis should be near the top of any list of diagnoses in a woman of reproductive age who presents with chronic pelvic pain.” – Joy Brotherton,** M.D., OB-GYN, Harbor-UCLA Medical Center
Myth 3: Endometriosis is a “Career Woman’s” Disease
“In 1938, Dr. Joseph Meigs, one of the earliest doctors interested in endometriosis?which had only just been named in the 1920s?wrote in an endometriosis paper:
‘What is more pathetic than the girl who marries and for economic reasons can't have a baby, who later goes to her doctor with a sterility problem that cannot be solved?’
In his paper, Dr. Meigs advocates for earlier marriages and pregnancies. His comments epitomized the thinking about endometriosis, that endometriosis was due to delayed childbearing. The myth continues on today being closely tied to infertility. And for so many years, menstrual pain, which was not to be discussed or complained about, was not addressed by women or their physicians, while infertility was.
The Endometriosis Association first noted this trend in 1980 when we founded the world's first research registry on the disease. Data from this registry, from a 1998 cohort of 4,000 patients with surgically confirmed endometriosis, showed that fully two-thirds of those responding had experienced their first pelvic symptoms before age 20, far too young to be considered "career women." Over time, with our research and that of others in the field, pain was established as the cardinal symptom of endometriosis and the field began looking at younger ages for onset of the disease.” – Mary Lou Ballweg, president, Endometriosis Association