Even though studies on endometriosis in teenagers began in the 1970s, “Many gynecologists today still claim it is only present in adults,” says Dr. Marc Laufer, chief of Gynecology at Boston Children’s Hospital and co-director of the Center for Young Women’s Health.
Laufer says a large part of his practice is devoted to this condition, in which tissue normally found on the inside lining of the uterus is present elsewhere (most commonly on the ovaries, fallopian tubes, ligaments that support the uterus and tissue covering the bladder and rectum). Roughly 10% of the female population is estimated to have endometriosis. Without treatment, many women with the disease can have chronic pain and some may become infertile.
What are the symptoms of endometriosis?
The first sign of endometriosis may be menstrual pain severe enough to interfere with daily activities. The pain may be sharp or dull and can also occur with bowel movements or urination.
Many young girls may think the pain is a normal part of menstruation, so it is important for them to be aware that it is not normal for menstrual pain to interfere with their daily life.
If a teenage girl presents with excessive menstrual pain, pediatricians should ask if there’s a family history of endometriosis on either the mother’s or father’s side. When there is a family history, the rates of endometriosis are markedly increased.
In addition, if there are concurrent gastrointestinal issues (endometriosis can affect bowel movements and cause constipation or diarrhea), it may be worth consulting with both a GI specialist and a gynecologist.
How is endometriosis treated, and when should you refer to a specialist?
The first round of treatment is a low dose contraceptive pill and an anti-inflammatory agent to treat dysmenorrhea (pain with periods).
If the pain persists, then there is concern for endometriosis, and a gynecology referral and laparoscopy are warranted. Laparoscopy is currently the only definitive diagnostic test. During this procedure a thin, lighted tube is inserted through an incision in the patient’s abdomen to view and treat internal issues in the pelvic region. If there are lesions of endometriosis (commonly referred to as implants) outside the uterus, the laparoscopy will not only reveal them, but allow the doctor to remove or destroy them.
When referring to a gynecologist, providers should be careful to choose someone familiar with detecting the disease in teenagers. “Endometriosis looks different in teenagers than it does in adults,” says Laufer. “On the laparoscopy results, cellular legions in teens may appear more subtle.”
And just because a woman had no symptoms in adolescence or early adulthood doesn’t mean she will never develop endometriosis, he adds. It can continue to form at any age. The subjective nature of symptoms, however, makes it difficult for clinicians to truly know if it is a case of late onset or late discovery.
“Some doctors claim they can cure endometriosis with surgery,” warns Laufer, “but without medical treatment the disease can come back after the surgery. There is no cure yet.”.”
Laufer says chronic pain management is an important aspect of endometriosis care. Yoga and acupuncture have both been proven to be helpful for many young women and adolescents.
What’s new in endometriosis research?
“Boston is one of the few places in the world where we can follow and study endometriosis from adolescence into adulthood,” says Laufer, referring to Children’s partnership with Brigham and Women’s Hospital. The Boston Center for Endometriosis is studying possible diagnostic alternatives to laparoscopy such as blood, urine, or saliva tests. Researchers there are also looking at dietary therapies, novel medical treatments, and a cure.
Laufer has been at Boston Children’s for 25 years, and says a lot of women he treated as teenagers are now adults and getting pregnant naturally.
“Today,” he says, “20% of women who are infertile have endometriosis. Perhaps someday, if earlier detection becomes more common, that number will drop; we know now that when we find it in teens, we can stave off infertility.”
Marc Laufer, MD, is chief of the Division of Gynecology and co-director of the Center for Young Women’s Health. He also works with the Boston Center for Endometriosis and the Center for Congenital Anomalies of the Reproductive Tract.