Endometriosis and Fertility Resource Page

If endometriosis signs start early, it typically takes more than four exams to figure it out.

Historically, endometriosis — in which tissue from the lining of the uterus, called the endometrium, escapes and lodges in other areas — has been thought of as a problem of adult women. According to the National Institutes of Health, 5.5 million women in North America have endometriosis; there is no cure, but pregnancy can sometimes trigger a lasting remission and the disease often gets better at menopause. The disease causes infertility in 30% to 40% of women who have it.

Two-thirds of adults with endometriosis began getting symptoms before age 20, and endometriosis is increasingly being found in young women as well.

It’s hard enough for any woman, adult or teenager, to get a correct diagnosis of endometriosis because there are so many other causes of abdominal pain, including appendicitis, bowel disease and pelvic inflammatory disease. In fact, it takes an average of nine years for most adult women to get a correct diagnosis, according to a review paper published last year by the American College of Obstetricians and Gynecologists.

But while adult women typically have two to three doctor visits before they get diagnosed, it takes more than four visits on average for teens whose symptoms began before age 15, partly because endometriosis in young women is still not on the radar screen for many doctors.

And teenagers themselves often put off seeing a doctor for fear they will get a pelvic exam, in which the doctor inserts a finger or metal instrument into the vagina to feel the cervix and ovaries. “Some kids are so afraid of a pelvic exam they won’t even get out of the car,” said Dr. Marc Laufer, chief of gynecology at Children’s Hospital Boston and lead author of the review paper. Doctors sometimes use ultrasounds on girls uncomfortable with pelvic exams.

Nobody knows why endometriosis occurs — it may be from menstrual blood flowing backward and into the abdomen, from endometrial cells migrating to the wrong place during fetal development, from normal cells in the pelvis turning into endometrial cells, or for some other genetic, immunologic or environmental reason. This aberrant tissue then causes painful scarring and bleeding, because it responds to the same monthly hormones as the uterine lining itself. (In rare cases, endometrial tissue even winds up in the nose, triggering monthly nosebleeds.)

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