Thoracic Endometriosis Syndrome and Quality of Life [ID 1580]

INTRODUCTION: The objective was to investigate the quality of life in individuals with thoracic endometriosis syndrome (TES) through a validated prospective survey. Thoracic endometriosis syndrome is a rare and understudied condition. METHODS: A retrospective chart review identified patients who underwent surgery between May 2019 and June 2023 by an endometriosis surgery center found to have TES (n=22, 2.6%). Fifteen patients (68%) with pathologically and/or visually confirmed TES completed an online survey which included demographic information, symptoms, and the validated Endometriosis Impact Questionnaire (EIQ). RESULTS: Common symptoms included dysmenorrhea (n=13, 86.7%), heavy menstruation (n=12, 80%), bloating (n=14, 93.3%), dyschezia (n=11, 73.3%), and lower back pain (n=11, 73.3%). Many experienced right-sided chest pain (n=10, 66.6%). Right-sided chest pain (90%) and shortness of breath (87.5%) were both worse during menstruation. All patients had pelvic and thoracic endometriosis. Nine patients (56.3%) were diagnosed with pelvic endometriosis first, whereas six (37.5%) were diagnosed simultaneously. Seven patients (46.6%) had stage III or IV endometriosis (AAGL 2021). The average age of the first chest symptom was 33, an average of 13 years after the first pelvic symptom. Participants saw an average of 6.7 providers, underwent an average of 2.5 procedures, and had an average delay to diagnosis of 14 years. Participants (n=15) reported the greatest impact in physical (54%), psychological (61%), and fertility (67%) categories of the EIQ. CONCLUSIONS/IMPLICATIONS: This study highlights the increased burden faced by women with a rare subset of endometriosis. Thoracic endometriosis syndrome is characterized by a substantial delay to diagnosis, considerable physical and psychological impacts, and fertility challenges.