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Thoracic Endo Co
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Information for clinicians

Thoracic endometriosis crosses speciality boundaries, and it is often recognised late. This page is for clinicians, commissioners and researchers.

Thoracic endometriosis can affect the diaphragm, pleura or lungs and, less commonly, the pericardium. It remains under-recognised, which can delay diagnosis and access to appropriate care. Thoracic Endo Co exists to improve recognition, promote timely access to specialist care, and strengthen the evidence base by bringing together patient experiences.

What the evidence shows

A large meta-analysis, first published in 2025, examined surgical outcomes for 1,182 patients with thoracic endometriosis syndrome across 28 studies spanning 25 years. The research team included specialists in cardiothoracic surgery, respiratory medicine and gynaecology.

The results showed 28.2% of patients experienced a recurrence of pneumothorax after surgery, and 14% required repeat surgeries. Post-operative complications were also common (30.8%), including prolonged air leaks that required extended chest tube drainage and longer hospital stays than expected.

The authors called for further high-quality research to inform standardised treatment protocols.

Key reference

Amin A, Baryshnikov I, Shafique MA, Naruka V, Kajitani S, Chavan H, Hirsch M, Hallifax RJ, Asadi N. Thoracic Endometriosis Syndrome: A Systematic Review and Meta-Analysis of Surgical Outcomes Among 1,182 Patients Over 25 Years. Journal of Minimally Invasive Gynecology 33(5):546–556. doi:10.1016/j.jmig.2025.12.020

Further reading

Amin A, Granato F. It's 2026 – Thoracic Endometriosis is Still an Enigma – and We're not Having it! Society for Cardiothoracic Surgery in Great Britain & Ireland Bulletin, Issue 20, August 2026, p. 64. Read the bulletin (PDF, 9.8 MB)

Where guidance currently stands

NICE guideline NG73 provides guidance on the diagnosis and management of endometriosis. Thoracic endometriosis was originally excluded from its scope because it was considered rare. In 2021, NICE undertook an exceptional surveillance review, which identified insufficient evidence to develop specific recommendations for diagnosing and managing endometriosis outside the pelvis. Although NG73 does not provide detailed guidance on thoracic endometriosis, it recommends referral to a specialist endometriosis service for suspected or confirmed endometriosis outside the pelvic cavity.

The European Society of Human Reproduction and Embryology (ESHRE) Endometriosis Guideline (2022) includes recommendations on thoracic endometriosis, while acknowledging the limited evidence available. It advises that diagnosis and treatment should be discussed by a multidisciplinary team with appropriate expertise, with thoracic surgeons involved when surgery is indicated. It also highlights symptoms clinicians should recognise, including cyclical shoulder pain, cough and pneumothorax (lung collapse).

When to consider thoracic endometriosis

  • Catamenial pneumothorax
  • Catamenial haemothorax
  • Catamenial haemoptysis
  • Recurring cyclical chest symptoms, such as pain, cough and breathlessness (see the full list of symptoms)
  • Recurring chest symptoms with an existing diagnosis of pelvic endometriosis
  • Lung nodules on imaging, alongside cyclical chest symptoms

Note for clinicians

Thoracic endometriosis often coincides with pelvic endometriosis; however, patients may not always have this diagnosis in place when presenting with chest symptoms.

Thoracic endometriosis should still be considered when timing is less exact, cycles are suppressed or irregular, symptoms occur outside menstruation, or a person does not currently menstruate. Clinicians must assess the whole history.

What we are asking for

  1. Earlier recognition of thoracic endometriosis alongside other causes of recurrent chest symptoms.
  2. Clear referral pathways, including diagnostic criteria and review of recurrent cases.
  3. Multidisciplinary care across thoracic surgery, gynaecology, respiratory medicine, radiology and primary care.
  4. Nationally consistent guidance on recognition, investigation, referral, management and recurrence.
  5. Better data and research, including patient-reported outcomes and delays to care.
  6. Respectful, informed communication that involves patients in decisions.
Read the full campaign

Our clinical advisory panel

Working with us

We welcome contact from clinicians, commissioners and researchers about teaching, collaboration, research or service development. Email [email protected].

We cannot give advice about individual patients. Clinical decisions remain with the treating team.