Endometriosis

Endometriosis is a condition where endometrium-like tissue — endometrium is the tissue that normally lines the uterus — grows in locations such as the fallopian tubes, ovaries, or pelvic tissue. This misplaced tissue can cause serious pelvic pain or painful menstrual periods (dysmenorrhea).

When lesions of endometriosis grow in other places, it can result in inflammation or release chemicals causing pain. Lesions of endometriosis can also grow and result in painful ovarian cysts and scar tissue. Endometriosis affects around 1 in 10 teens and adolescents.

Endometriosis can be mild, moderate, or severe. Some people experience no symptoms at all, but it may get worse over time. Often, if your family has a history of endometriosis, pelvic pain, or infertility, there is a higher risk of developing endometriosis.

If you or your child has endometriosis, you could be experiencing:

• Painful periods
• Lower back and/or abdominal pain
• Pelvic pain when you’re not on your period
• Frequent urination, diarrhea, or constipation
• Excessive bleeding or bleeding between periods

Research shows that people with endometriosis have been found to have a higher association with:

• Migraines
• Hashimoto thyroiditis
• Celiac disease
• Inflammatory bowel disease
• Painful bladder syndrome (interstitial cystitis)
• Ehlers-Danlos syndrome (EDS) 
• Postural orthostatic tachycardia syndrome (POTS)
• Arthritis
• Scoliosis
• Temporomandibular joint (TMJ) syndrome
• Kidney stones
• Fibromyalgia
• Chronic fatigue
• Sjogren’s syndrome

Currently, there are three most accepted theories of endometriosis, which are:

• Sampson's Theory
• Meyer's Theory
• Vascular Theory

The exact cause of endometriosis is unknown, although, as research continues, we have learned that there is a strong genetic component to endometriosis appearing in patients.

If you are experiencing any pain or other symptoms associated with endometriosis, consult with your doctor. They will ask you if you have a family history with endometriosis, what specific symptoms you have, and ask questions about your pain.

There are no blood tests to diagnose endometriosis, and most imaging tests will not detect endometriosis. The only way to officially diagnose this condition is to have a procedure called a laparoscopy. This surgical procedure allows a doctor to look at the pelvic organs with a tiny camera. During your first appointment, your doctor may prescribe medications for pain management before they suggest surgery.

Other tests that your physician may order before the laparoscopy include:

• Blood tests or vaginal cultures (to check for infection)
• A pelvic ultrasound or MRI (to rule out other conditions)

Studies confirm that endometriosis is often left undiagnosed or misdiagnosed for many years — especially in adolescents and teens. If left untreated, patients may experience anxiety, depression, and potentially infertility in their adult lives.

While there is no cure to endometriosis, it can be treated through a holistic approach — caring for the whole patient with emphasis on hormonal treatments, psychological care, and pain management.

Hormonal treatments

Hormonal treatment can relieve many endometriosis symptoms for patients when taken continuously. Hormonal treatments can include:

• Birth control pills, patches, or rings
• Levonorgestrel-containing intrauterine devices (IUD) 
• Non-contraceptive progesterone
• Medroxyprogesterone acetate injections
• Gonadotropin-releasing hormone agonist (Gn-RHa), also known as Lupron-Depot®
• Danazol
• Aromatase inhibitors

Laparoscopic surgery

During a laparoscopy, a physician removes the visible endometriosis. Many teens find relief from the symptoms after this procedure, but some find the pain persists or returns over time.

Additionally, hysterectomy is not a recommended option in adolescents and is a last resort for patients who no longer desire children and have failed other treatments.

Pain management

Pain treatment services, such as acupuncture, biofeedback, or physical therapy, may be used to help cope with the pain from endometriosis.

To further assist in pain management, our team offers psychological services to help patients work through their concerns and learn coping skills as they move through life with this condition.

The Division of Gynecology at Boston Children's Hospital provides expert medical care and offers extensive information to patients who are living with endometriosis. Pelvic pain and painful menstruation can be distressing for adolescents and teens. We provide empathetic age-appropriate treatment, counseling, and special health education programs, including supervised online chats to help treat each patient.