About Endometriosis Cymru

1 in 10 women are affected by endometriosis. Our aim as Endometriosis Cymru is to begin to make a significant difference for anyone affected, by sharing the ‘living with’ experience of people who have an endometriosis diagnosis.

The resources currently available are the first of many planned, to establish Endometriosis Cymru as a source for reliable information for people in Wales, throughout any stage of their endometriosis diagnosis or ‘living with’ journey.

Endometriosis Cymru is part of a larger programme of work across NHS Wales and Welsh Government to improve the experiences and outcomes for patients in Wales. Previously led by the Women’s Health Implementation Group, it has now become part of a national clinical network focused on gynaecology, and a NHS Wales ‘Women’s Health Plan’. Further progress of the wider programme of work will be shared via Endometriosis Cymru

The endometriosis mandate within the Women’s Health Implementation Group originates from the November 2018 Task & Finish Group recommendations; ‘Endometriosis Care in Wales: Provision, Care Pathway, Workforce Planning and Quality and Outcome Measures’.

Endometriosis Cymru was a collaborative project led by NHS Wales and Welsh Government in partnership with Cardiff University and Fair Treatment for Women in Wales. In addition to ensuring the resources are relevant, informative and supportive for our patient communities, the resources have been designed to help deliver on recommendations from the Task & Finish Group report in particular to:

Provide information

  • Inform people in Wales about endometriosis through factual information, statistics, and visual materials
  • Tell the stories of people with lived experience of endometriosis so the impact of this condition can be appreciated by family, friends, teachers, employers, GPs and healthcare professionals

Expedite appropriate medical help-seeking

  • Ensure that people know when to seek medical help relating to endometriosis in line with the NICE guidelines
  • Develop a symptom tracker that could help people to explain their problems clearly to GPs and other health professionals when necessary
  • Help people understand the different steps in the medical care pathway

Support people living with endometriosis

  • Explain different aspects of coping with they symptoms of endometriosis
  • Encourage people to speak freely about their condition, symptoms and experience of living with endometriosis
  • Describe practical support people with endometriosis could access

Adopt will-building methods including

  • Use creative arts to generate empathy through co-produced arts projects between artists and people with lived experience of endometriosis
  • Develop tools that can help build empathy for people with endometriosis