Inform
Make clear information about thoracic endometriosis easier to find and understand.
Information · Evidence · Change
Clear information about thoracic endometriosis, and advocacy for improved care pathways.
Thoracic Endo Co helps people understand possible thoracic endometriosis symptoms, supports informed conversations with healthcare professionals, gathers patient evidence and campaigns for better care.
The condition
What is thoracic endometriosis?
Thoracic endometriosis is endometriosis affecting the chest, often the diaphragm or the tissue around the lungs. It can be associated with pneumothorax — a collapsed lung — as well as blood or fluid around the lung, coughing up blood, chest pain, shoulder-tip pain and breathlessness.
Symptoms may be cyclical, but they do not always follow a textbook pattern.
Learn about thoracic endometriosisWhat we do
Our priorities
Evidence
Gather patient-reported experiences to describe gaps in recognition, diagnosis, referral and care.
Change
Use evidence and lived experience to advocate for better clinician awareness, pathways and national guidance.
Research
Add your experience to the evidence
If you are aged 18 or over and meet the survey eligibility criteria, your experience can help us understand what is happening for patients. The survey is voluntary. The survey page explains who can take part, what information is collected, how it will be used and your choices before you begin.
Read about the surveyOur campaign
No one should have to live with repeated chest symptoms or recurrent lung collapse before thoracic endometriosis is considered.
We are calling for earlier recognition, multidisciplinary care, clearer referral pathways and better support for patients.
Read what we are asking for
Be part of the change
Clinical advisory panel
Guided by specialists across both sides of the condition
Thoracic surgeons and gynaecologists from NHS trusts in London, Oxford, Manchester, Bristol and Leeds, all home to BSGE-accredited endometriosis centres.
Mr Aamir Amin
Cardiothoracic surgery resident
Manchester University NHS Foundation Trust
Mr Andrea Bille
Consultant thoracic surgeon
Guy's and St Thomas' NHS Foundation Trust
Mr Francesco Di Chiara
Consultant thoracic surgeon
Oxford University Hospitals NHS Trust
Mr Islam Gamaleldin
Consultant gynaecologist and endometriosis specialist
Southmead Hospital, Bristol
Mr James Tibbott
Consultant gynaecologist and endometriosis specialist
Leeds Teaching Hospitals NHS Trust