Endometriosis in Teens and Adolescents: More Than Just Cramps

Pelvic pain, located in the lower abdomen, is a common symptom that impacts individuals of all ages. When pelvic pain continues for more than three months, it is categorized as chronic pelvic pain and should be evaluated. The specific type of pain that occurs during periods is called dysmenorrhea. Dysmenorrhea is common and affects 40-90% of adolescents. When dysmenorrhea or pelvic pain is severe, it can have potential negative effects quality of life, leading to missed activities, lower academic performance, and poor social well-being.

Understanding Endometriosis

Endometriosis is a condition where the uterine lining (that is typically shed during a period) is found outside the uterus, usually within the pelvis in the lining called peritoneum. It can also cause scar tissue to form or in advanced cases cause ovarian cysts called endometriomas. The exact cause is unknown, it may progress over time and the severity can vary between individuals. It is estimated to be the cause of pain in one quarter to one third of adolescents with chronic pelvic pain and up to 75% of adolescents who have a laparoscopy (surgery) to look for endometriosis.

Adolescents with a family member with endometriosis, increased exposure to menstruation (from earlier onset of periods, heavier bleeding or shorter menstrual cycles) and differences in the development of the uterus, vagina or hymen can increase the risk of endometriosis.

Endometriosis pain often is first noticed after the first period and can be during periods, between periods or both. Pain can occur in various areas, including the abdominal muscles, lower back, below the belly button and down the legs. Other common symptoms along with pain reported by adolescents with endometriosis include urinary or gastrointestinal issues, such as painful urination, diarrhea or constipation. Standard over-the-counter pain relievers like ibuprofen and acetaminophen may not provide complete relief for endometriosis-related pain. During diagnosis, doctors must carefully eliminate other potential conditions such as constipation, irritable bowel syndrome, pelvic infection, urinary tract infection, appendicitis, kidney stones, sports related muscle injuries and issues concerning the development of the uterus and ovaries.

Risks and Diagnosis

Endometriosis is often undetected in adolescents, resulting in a delayed diagnosis averaging 4-10 years. Ongoing pelvic pain can contribute to financial losses, time away from school and work, and strained relationships with family, friends and peers. Untreated endometriosis can lead to long-term complications such as pelvic adhesions, chronic pain, pain during intercourse, infertility, and an increased risk of endometrial and ovarian cancer.

In cases where pelvic pain and/or dysmenorrhea continues despite anti-inflammatory pain medication and hormonal medication, the possibility of endometriosis should be explored. Physical examination cannot diagnose endometriosis, and adolescents often don’t have areas of endometriosis that can be seen on ultrasounds or MRIs. A laparoscopy, a minimally invasive surgical procedure, is the standard for diagnosis and allows for biopsies and the removal of endometriosis and scar tissue. The amount of endometriosis noted during surgery is not always associated with the level of pain and other symptoms.

Post Surgery

Post-surgery treatment involves hormonal medications designed to decrease or stop menstrual flow and decrease estrogen levels, curbing the growth of endometriosis. The choice of medication depends on symptoms and potential side effects, with options ranging from hormonal treatments such as pills, injections, or a hormonal intrauterine device (IUD) to gonadotropin-releasing hormone agonists or antagonists, which place the ovaries in temporary menopause to help stop endometriosis growth and improve pain. Non-narcotic pain medication may also be prescribed.

Team Approach to Treatment

Endometriosis treatment requires a team approach. In addition to the medical and surgical care provided by a gynecologist, care may include: a pediatric surgeon for complex surgical cases, physical therapy for pelvic muscle relaxation and conditioning, gastroenterology for bowel related conditions, pain management team for long-term pain management and psychology for social and emotional challenges that result from dealing with chronic pain. Complementary therapies, such as acupuncture, may also be considered. The involvement of a multidisciplinary team is crucial for comprehensive care.  

Endometriosis requires lifelong management to improve and enhance health, fertility, and overall quality of life. Early identification and treatment by a collaborative healthcare team are paramount in overcoming the challenges associated with endometriosis and achieving these long-term goals.