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
“There is some hesitation and embarrassment to talk about endometriosis, but this is a new day. Women should feel comfortable talking about their health, all aspects of it. We see these conversations happening on television and in movies. The more you can educate yourself and those around you, the better they can understand what you’re experiencing.” – Charlotte Owens, M.D., medical director, general medicine, AbbVie
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
Myth 4: there’s a one-size-fits-all treatment
“For women who suffer from endometriosis, the idea that surgery or medication will cure all of their pain can sometimes be a myth. Sometimes it can, but sometimes women have suffered for years and years and there is no one magic fix for everyone. Each patient is different. I am a believer that we need to treat the whole body and mind, not just the disease. This includes things like looking at your diet, exercise, how you cope with anxiety and pain, your overall wellness. As a surgeon, I have practiced yoga for years as a means of dealing with stress and helping with the aches and pains of spending long hours in the OR. Sometimes something as simple as how you breathe can be the best medicine.” – Joy Brotherton, M.D.
Myth 5: pregnancy can cure endometriosis
“Another myth that was prevalent in our earlier days but continues being promulgated somewhat is that pregnancy cures the disease. This myth has been debunked by the Endometriosis Association's work with our large research registry, and by Donald Chatman, M.D., a Chicago gynecologist and former president of the American Association of Gynecologic Laparoscopists, who showed active endometriosis in a group of 17-year-old girls who had been pregnant, and in other work.
Let's end all the myths and keep working on the science to improve our understanding of this complex disease.” – Mary Lou Ballweg
** Dr. Brotherton is a paid consultant for AbbVie.
***Along with organizations such as the Endometriosis Association, AbbVie is committed to advancing understanding of and raising awareness about endometriosis, and to furthering research that seeks to improve the lives of those living with and impacted by this disease.