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Patients at heart of endometriosis study

Women with endometriosis - a painful, debilitating disease linked to infertility - are being invited to join a research project that aims to shape possible future treatments.

The initiative will team up women with endometriosis, carers, and healthcare professionals to prioritise areas of research they believe have not yet been tackled.

The project’s aim is to identify the top ten leading challenges that women with endometriosis face, with a view to influence the prioritisation of future research in this area.

Debilitating condition

Endometriosis affects an estimated 176 million women.

It occurs when tissue similar to the lining of the uterus is found elsewhere - most commonly in the abdomen, on the ovaries, bladder and bowel.

This misplaced tissue behaves like the lining of the uterus, bleeding every month and creating local inflammation.

It is associated with chronic pain, heavy bleeding, and infertility, and can impact on mental, and social wellbeing.

Priority setting survey

Anyone affected by endometriosis - patients, carers, employers and professionals - is invited to contribute to the project through a survey which can be found at the link below.

Endometriosis survey

The project is being run in partnership with the James Lind Alliance, and is supported by the World Endometriosis Research Foundation (WERF).

Professor Andrew Horne, who is leading the research at the University of Edinburgh’s MRC Centre for Reproductive Health, said that although endometriosis is as common in women as diabetes and asthma, it fails to attract the same attention, support and funding as those diseases.

It is important that we ensure medical researchers are focussing on the issues that really matter for women living with this debilitating condition, and deliver treatments that make a genuine difference to their quality of life.

Professor Andrew Horne MRC Centre for Reproductive Health

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