What we are asking for
1. Earlier recognition
Recurring pneumothorax, breathlessness, recurring chest or shoulder pain, coughing up blood and relevant endometriosis history should prompt clinicians to consider thoracic endometriosis alongside other causes.
2. Clear referral pathways
Patients and clinicians need transparent routes for specialist advice, including diagnostic criteria and options for escalation and review of recurrent cases.
3. Multidisciplinary care
Thoracic endometriosis can cross speciality boundaries. Care should enable appropriate collaboration between thoracic surgery, gynaecology, respiratory medicine, radiology, emergency medicine, primary care and pain or fertility services when relevant.
4. Nationally consistent guidance
We are calling for practical, evidence-informed national guidance that addresses recognition, investigation, referral, management options, follow-up and recurrence.
5. Better data and research
The scale and impact of thoracic endometriosis remain difficult to describe. Improved auditing, patient-reported outcomes and ethically governed research are needed to understand thoracic endometriosis better, including delays to accessing appropriate healthcare.
6. Respectful, informed communication
Patients should receive clear explanations, be involved in decisions, and have the impact on daily life and their wellbeing taken seriously.
How we will work
- Publish anonymised and aggregated findings where it is appropriate to do so.
- Develop policy briefs and practical recommendations grounded in evidence and lived experience.
- Engage constructively with NHS and/or European bodies, professional organisations and researchers.
- Be transparent about our methods, our limitations, conflicts of interest and funding.
- Focus on community benefit and healthcare system improvement.