When Donna Laux told her gynecologist – who was head of the department at a prestigious hospital – that she thought she had endometriosis, he disagreed because she was in her early 20s. He called it a disease of a 40+ year-old woman.
While Laux felt validated, she had no idea what to do next.
What is endometriosis?
Unfortunately, Laux’ experience is typical. According to the Endometriosis Foundation of America (EFA), 1 in 10 women of childbearing age live with endometriosis, it’s one of the top three causes of female infertility and hysterectomy, and costs society a staggering $110 billion annually. Despite this, it’s often mistaken for other diseases, frequently taking 10 or more years to correctly diagnose.
While things have improved since Laux was diagnosed in the late 70s, many misconceptions persist. Laux – who started out as a patient and is now an educator and program director who launched the second practice in the country devoted entirely to endometriosis in the early 90s – says, “Women are still being told [that] young women don’t get it, if you have it, you can’t conceive (but if you have a baby that will fix you), that it always comes back. None of this is true.”
Endometriosis, simply put, is where tissue that normally lines the uterus is found outside the uterus, says Dr. Sheryl Ross, OB/GYN and Women’s Health Specialist at Providence Saint John’s Health Center in Santa Monica, CA.
These areas are referred to as endometrial implants, and can be found on the ovaries, fallopian tubes, bowels, bladder, and anywhere else on the pelvis, she says.
Because these areas are outside of the uterus, endometrial lesions develop that worsen over time and can cause severe pain, the EFA says. This pain can be chronic and disruptive, and symptoms range from mild to severe, says Dr. Ross. Pain is more commonly seen before and during menstruation and includes painful periods, painful sex, lower back pain, and pelvic pain, she adds. Some women don’t have symptoms at all.
The following risk factors are compiled from Dr. Ross, Dr. Gerardo Bustillo, OB/GYN at Orange Coast Memorial Medical Center in Fountain Valley, CA, and Dr. Kevin Audlin, co-director of The Endometriosis Center at Mercy Medical Center:
Caucasian women who have Type A personalities (they tend to have compromised immune systems because they work out a lot or don’t eat well)
Family history (10 times higher risk if mother, sister, or aunt has it)
Chronic steroid use
Have never been pregnant
Have long periods lasting longer than 7 days
Severe acne as a teenager
Certain pesticide exposure
Early onset of menses
Interestingly, endometriosis is more common in women who are taller, thinner, have red hair, freckles, sensitivity to the sun, and pre-cancerous skin moles.