Unheard to empowered: endometriosis and the space for change

On her 18th birthday Rachel Joseph received an unusual present.

Among the cards and presents was a letter from the NHS which confirmed she had endometriosis. Despite the confusing name and complex medical terms, it was a positive turning point for Rachel.

She said: “It was written proof that what I was experiencing was not all in my head, that I wasn't overdramatic and that the awful things I was experiencing had a name.”

This moment started a life-long dedication to improving care and recognition for those with the condition - something Rachel shared in her TED-style talk at our 2024 conference.

Endometriosis is a chronic disease and can cause symptoms including severe pain during periods, abdominal bloating, nausea, fatigue, depression, anxiety, and infertility, and affects one in 10 women and those assigned female at birth globally, according to the World Health Organization.

March is Endometriosis Awareness month and women's health is a priority for both Health and Care Research Wales and the Welsh Government.

For Rachel, the patient voice is key in shaping endometriosis research and policy, she said: “My determination to get the endometriosis patient voice heard has manifested into completing research and continuing to explore the worlds of advocacy and policy.”

She has collaborated with the charity Fair Treatment for the Women of Wales (FTWW) and Cardiff and Bangor University to develop projects aimed at improving communication between patients and healthcare providers.

Now, Rachel is undertaking perhaps her biggest challenge yet, a PhD funded by the Health and Care Research Wales Faculty titled ‘A Realist evaluation of the implementation of a women-centred NHS endometriosis website and tools to support more timely diagnosis and shared decision making with general practitioners’.

This three-year project aims to improve the understanding and effectiveness of the NHS Wales Endometriosis.Cymru Symptom Reporting Tool. By analysing patient and practitioner experiences, it seeks to enhance early diagnosis and symptom management.

Expected outcomes include training for a third-sector researcher, publication of articles, conference submissions, and recommendations for both patients and GPs.

Find out more about Rachel’s inspiring work in endometriosis advocacy and research by watching her TED-style talk at the Health and Care Research Wales conference 2024.