Experiences of Endometriosis in Wales

This project was part of a consultation exercise to the Welsh Government. It was conducted by an undergraduate student and a group of female academics at Cardiff University. It set out to understand experiences of  living with endometriosis in Wales.

Outputs

Experiences of Endometriosis in Wales booklet

The women involved

A group of fourteen women living in Wales who are part of the organisation Fair Treatment for the Women of Wales (FTWW). All the women have an official diagnosis of endometriosis.

The workshop activities

We carried out several drawing exercises, designed to encourage the women to share their experiences of endometriosis:

• Draw yourself thinking or talking about endometriosis
• If your endometriosis symptoms were an object, what would they be?
• If they were a creature or an animal, what would it be?
• If they were a place or situation, what would they be?
• How would you draw your relationship with medical staff?

Finally, we asked the women to describe to us any positive experiences they have had in relation to endometriosis.

The main conclusions

The women talked about:

• the negative effects endometriosis has on their physical health, mental health and social life
• the lack of understanding that their friends, family and doctors have about endometriosis due to its invisibility
• how the healthcare system does not recognise and treat endometriosis well
• how they have taken responsibility for their own health
• the importance of the support they receive from other women with endometriosis.

Partners

Research Team

Hannah Kingwell, Undergraduate Intercalated Medical Student, School of Psychology, Cardiff University

• Sofia Gameiro, School of Psychology, Cardiff University
• Lisa El Refaie, ENCAP, Cardiff University
• Jacky Boivin, School of Psychology, Cardiff University