Thoracic Endometriosis Syndrome and Quality of Life [ID 1580]

Ariana Mastrogiannis, Tamer Seckin, Clare Murphy, Timur Seckin, Amanda Chu
In: Obstetrics & Gynecology · 2025 · vol. 145(6S) , pp. 18S · doi:10.1097/aog.0000000000005916.060 · W4410388586
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This study surveyed 15 patients with thoracic endometriosis syndrome, finding a significant delay in diagnosis, high symptom burden including chest pain, and substantial impacts on physical, psychological, and fertility domains.

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This study evaluated the quality of life and clinical characteristics in 22 patients with thoracic endometriosis syndrome, a rare condition where endometrial tissue affects the chest cavity. Through retrospective chart reviews and surveys, researchers found that participants experienced significant delays in diagnosis averaging 14 years and reported severe impacts on physical, psychological, and fertility domains. The majority of patients suffered from right-sided chest pain and shortness of breath that worsened during menstruation, alongside common pelvic symptoms like dysmenorrhea and bloating. This paper is centrally about endometriosis — specifically the thoracic manifestation known as thoracic endometriosis syndrome.

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Abstract

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.
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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.

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endometriosisthoracic_endometriosisdysmenorrhea

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