Christina Shimek , a senior at St. Bernard's High School in Fitchburg, is only 17, but she has already felt more pain than many adults have in a lifetime.
A year ago, Shimek, who lives with her parents in Leominster, said she woke up one morning "in excruciating pain in my lower back and pelvic area. I was in tears." Frantic, her parents took her to the hospital, where doctors assumed that the trouble was her appendix and took it out. It turned out to be normal.
The pain persisted. She missed school for four months, had to repeat chemistry, and missed an important rite of passage, her "junior ring ceremony," in which students get their class rings. She went to two doctors, who "were both baffled," she said. Finally, a nurse suggested endometriosis, a diagnosis that was confirmed by surgery.
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 percent 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 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. Doctors sometimes use ultrasounds for girls uncomfortable with pelvic exams.
