When to refer a pediatric patient for endometriosis

Endometriosis is a complex disease in which endometrium-like tissue grows in locations such as the fallopian tubes, ovaries, or pelvic tissue, leading to serious pelvic pain and other symptoms.  Although there is a common assumption that the disease only affects adults, approximately two-thirds of people with endometriosis report that their symptoms were present before age 20. Pediatric patients who experience intense pelvic pain, gastrointestinal issues, and emotional distress surrounding their menstrual cycle should be screened for the disease. When treatments — such as over-the-counter pain medication or hormonal contraceptives — fail to manage symptoms, it may be time to refer to a specialist.

Here, Dr. Jessica Shim in Boston Children’s Division of Gynecology offers insight on when to refer young patients with endometriosis to a gynecologist.

What are the symptoms of endometriosis?

Pain is a common symptom of endometriosis, but younger patients don’t necessarily experience less pain than older patients. Any pain associated with menstruation should be taken seriously. When evaluating pediatric patients, primary care providers should be aware of this and other key symptoms, including:

• Severe dysmenorrhea (painful periods) that may interfere with daily activities
• Chronic pelvic pain even when not menstruating
• Gastrointestinal symptoms, including diarrhea, constipation, bloating, nausea, or pain with bowel movements, that worsen during periods
• Urinary symptoms, including painful urination, urgency, or frequent urination, that worsen during periods
• Heavy menstrual bleeding or irregular bleeding

Starting the conversation about menstrual pain

The first step to diagnosing endometriosis is to talk about it — encouraging and reassuring patients and their family that you’re there to help them without judgement.

“Normalize the discussion about your patients’ menstrual cycle during regular wellness visits before symptoms arise so that when they do experience their first period, they’re comfortable sharing anything that may be concerning,” says Shim.

For patients who might be feeling embarrassed or hesitant to discuss their symptoms, Shim suggests offering time — either with or without parents in the room — during the appointment to establish a supportive environment and foster trust. “Ask direct but sensitive questions about how pain affects daily activities, school attendance, and social life,” she says.

Additionally, Shim recommends talking to patient families about how any pelvic pain, or pain during periods that impacts daily life, is not normal and should not be dismissed.

When should you refer for endometriosis?

Early referral is key with endometriosis because a timely diagnosis can help mediate the progression of the disease. If you suspect a patient may have endometriosis, you should refer when:

• Pelvic pain or dysmenorrhea significantly impacts their quality of life, such as attending school, participating in extracurricular activities, or socializing.
• There is a strong family history of endometriosis (one or more close biological relatives).

Our approach to treating endometriosis

When patients are referred to the Division of Gynecology, Shim and her colleagues provide a comprehensive evaluation and begin the management of endometriosis-associated symptoms with hormonal, non-hormonal, and surgical treatment options.  

“At Boston Children’s, we take a holistic approach to our care, since endometriosis impacts the whole person,” she explains. “We offer psychosocial support to focus on the patient’s overall well-being.” That includes a dedicated gynecology social worker who connects with patients experiencing chronic pelvic pain or endometriosis and require assistance to function.   

This multidisciplinary care also includes pain treatment services, acupuncture, and physical therapy, as well as long-term follow-up protocols to monitor symptoms and quality of life as patients grow. The team partners with referring providers and communicates each patient’s care needs back to maintain consistency in long-term treatment and symptom management.

Refer a patient to the Division of Gynecology.