Study objective: This multi-institutional, observational, retrospective cohort study aimed to characterize the demographics and preoperative medical management of patients with pathology-confirmed endometriosis.
Methods: We reviewed patients <22 years at 8 tertiary care pediatric hospitals in the Midwestern United States who underwent diagnostic laparoscopy and had biopsy-confirmed endometriosis. Patients were identified through pathology records. Demographics, medical history, clinical symptoms, and prior medical management were extracted. Descriptive statistics were computed.
Results: Among 305 patients, median age at first presentation to pediatric and adolescent gynecology (PAG) was 15.6 years (interquartile range: 14.2-17.1). Most patients were White (83.3%) and most had commercial insurance (70.5%). Only 4.3% had a diagnosis of endometriosis prior to their initial presentation to PAG. Common symptoms included progressive dysmenorrhea (76.7%), heavy menstrual bleeding (50.8%), missed school/activities due to dysmenorrhea (55.1%). Patients sought care for their symptoms from a range of providers in addition to PAG, including primary care/adolescent medicine (75.1%), gastroenterology (18.7%), adult gynecology (22.3%), and physical therapy (13.4%). Nearly all patients (92.8%) tried oral hormonal menstrual suppression prior to laparoscopy. Hormonal management included combined oral contraception (62.3%), medroxyprogesterone acetate injection (15.7%), ≤5mg daily norethindrone (14.8%), >5mg daily norethindrone (13.4%), hormonal intrauterine system (13.1%), and contraceptive implant (5.3%).
Conclusions: Patients with pathology-proven endometriosis typically presented with progressive dysmenorrhea, missed school or activities, and heavy menstrual bleeding. They sought care from a variety of providers and while most tried hormonal management of symptoms, the method used varied.
Keywords: Endometriosis; Heavy menstrual bleeding; Missed school; Progressive dysmenorrhea.
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