The management of women with thoracic endometriosis: a national survey of British gynaecological endoscopists

OBJECTIVES: This study evaluates current national opinions on screening, diagnosis, and management of thoracic endometriosis. BACKGROUND: Thoracic endometriosis is a rare but serious condition with four main clinical presentations: pneumothorax, haemoptysis, haemothorax, and pulmonary nodules. There are no specialist centres in the United Kingdom despite growing patient desire for recognition, investigation, and treatment. METHODS: We distributed a multiple-choice email survey to senior members of the British Society for Gynaecological Endoscopy. Descriptive statistics were used to present the results. Results: We received 67 responses from experienced clinicians having provided over 800 combined years of endometriosis patient care. The majority of respondents managed over 100 endometriosis patients annually, for more than five years. Over one third had never managed a patient with symptomatic thoracic endometriosis; just 9% had managed more than 30 cases over the course of their career. Screening varied by modality with only 4% of clinicians always taking a history of respiratory symptoms while 69% would always screen for diaphragmatic endometriosis during laparoscopy. The management of symptomatic thoracic endometriosis varied widely with the commonest treatment being surgery followed by hormonal therapies. Regarding management, 71% of respondents felt the team should comprise of four or more different specialists, and 56% believed care should be centralised either regionally or nationally. CONCLUSIONS: Thoracic endometriosis is poorly screened for amongst clinicians with varied management lacking a common diagnostic or therapeutic pathway in the United Kingdom. Specialists expressed a preference for women to be managed in a large multidisciplinary team setting at a regional or national level.