Not Your Typical Menstrual Pain: Endometriosis in Teens and Adolescents

Pelvic pain, or pain in the lower abdomen, is a common symptom affecting women of all ages, including adolescents. In fact, up to five percent of visits to gynecologists by adolescents are for pelvic pain. When pain lasts for longer than three months in children it is considered chronic pain and should be evaluated, as it can have a negative effect on normal development, academic, career and social success.

What Is Endometriosis?

Endometriosis is a condition in which the menstrual tissue is found outside the uterus, within the pelvis. Endometriosis can develop in different ways in different individuals. Girls who have a mother, sister or aunt with endometriosis have an almost 10 times increased chance of developing it. Girls who start their menstrual cycles early and have long menstrual cycles also have an increased risk.

Pain due to endometriosis is different from normal menstrual pain. It typically starts 1-2 weeks prior to the menstrual cycle and lasts throughout the majority of the days of bleeding. In addition to pain below the belly button, pain from endometriosis can be located within the muscles of the abdominal wall, in the lower back and down the legs and is often described as achy, dull, tightening, throbbing or stabbing.

Endometriosis pain is not usually completely relieved with typical doses of over the counter pain medications such as ibuprofen, acetaminophen or menstrual pain relief medicine. When examining for endometriosis, doctors will need to rule out constipation, irritable bowel syndrome, appendicitis, pelvic infection, urinary tract infection, kidney stones, muscle pain from sports injury and problems with development of the uterus and ovaries.

What Are the Risks?

Because most people are not aware that endometriosis can affect adolescents, girls often see five or more doctors before the diagnosis is made, with an average delay in diagnosis of 4-10 years. During that time, there is a significant loss of finances and time away from school and work. Relationships with family, peers and intimate partners can also suffer. Long term problems that occur if endometriosis is not identified early and properly treated can include:

• Pelvic adhesions
• Chronic pain
• Pain with sex
• Inability to have children
• Preterm birth
• Development of endometrial and ovarian cancer in the future

How Is It Diagnosed?

If menstrual pain persists after treatment with prescription strength nonsteroidal anti-inflammatory drugs (NSAIDS) and hormonal contraceptives, the diagnosis of endometriosis should be considered. Up to 70 percent of girls whose pelvic pain does not respond to NSAIDS and birth control pills have endometriosis.

Physical examination may suggest endometriosis, but isn’t always enough proof for a diagnosis. Ultrasound and MRI are also not able to diagnosis early stages of endometriosis and there is no accurate blood test. A minimally invasive surgical procedure called a laparoscopy is the standard for diagnosis. Removal of endometriosis and scar tissue can be done during the laparoscopy.

What Happens After Surgery?

Treatment with medications that stop menstrual flow and decrease estrogen levels (which cause endometriosis to grow) is recommended after surgery. Deciding which medications work depends on the symptoms and side effects. The doctor may recommend hormonal pills or injections or a hormonal intrauterine device (IUD). Patients may also be prescribed non-narcotic pain medication. Narcotics do not treat pelvic pain and should not be used in adolescents except immediately after surgery for post-surgical pain. There is no known prevention of endometriosis and pain may not often be relieved completely. Treatment is aimed at minimizing pain and long-term complications.

Treating endometriosis requires a team approach. In addition to the medical and surgical care provided by a gynecologist, the following providers may also be involved in care, including; pediatric surgery for complex surgical cases, a physical therapist trained in pelvic floor, physical therapy for muscle conditioning, the pain management team for long-term management of pain, gastroenterology for associated bowel-related conditions and behavioral medicine to help manage the social and emotional challenges that are associated with a medical diagnosis. Every member of the care team plays an important part in the treatment of endometriosis. Complimentary therapies such as acupuncture may also be discussed.

Endometriosis is a condition that once diagnosed, will require lifelong management to improve health, future fertility and quality of life. Early identification and appropriate treatments by a multidisciplinary team are important in achieving these goals.

For more information about the multi-disciplinary care available at Nationwide Children’s Hospital, or to request an appointment with Pediatric and Adolescent Gynecology, click here.