What is Endometriosis?

Endometriosis is an inflammatory and estrogen dependent 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. There is nothing that can be done to prevent endometriosis but early diagnosis and management can result in better outcomes.

What are the Signs and Symptoms of Endometriosis?

Pain due to endometriosis is different from normal menstrual pain. Endometriosis related pain 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, down the legs and is often described as achy, dull, tightening, throbbing or stabbing.

What are the Risks of Endometriosis?

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 time away from school and work with a significant loss of finances. 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 Endometriosis Diagnosed and Treated?

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, problems with development of the uterus and ovaries, and emotional pain that can present as pelvic pain.

If menstrual pain persists after treatment with prescription strength nonsteroidal anti-inflammatory drugs (NSAIDS) and hormonal contraceptives, the diagnosis of endometriosis should be considered. 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. Studies show that up to 70 percent of girls whose pelvic pain does not respond to NSAIDS and birth control pills have endometriosis at the time of surgical exploration. Removal of endometriosis and scar tissue can be done during the laparoscopy.

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 disorders for muscle conditioning; the pain management team for long-term management of pain including acupuncture; gastroenterology for associated bowel-related conditions; urology for urinary problems associated with endometriosis; behavioral medicine to help manage the social and emotional challenges associated with a chronic medical diagnosis and adolescent medicine to serve as a medical home. Every member of the care team plays an important part in the treatment and management of endometriosis to optimize quality of life and improve long-term outcomes.