James Lind Alliance Priority Setting Partnership for Endometriosis

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The Endometriosis Priority Setting Partnership is led by the University of Edinburgh and the project is independently overseen by the James Lind Alliance (JLA), a non-profit making initiative established in 2004. The National Institute for Health Research (NIHR) funds the infrastructure of the JLA to oversee the processes for Priority Setting Partnerships (PSPs).

PSPs aim to help patients, people who support them, and clinicians to work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area.

What is the aim of the endometriosis PSP?

The aim of this project is to prioritise the top ten research uncertainties in endometriosis.

We hope that the results of the project will shape the endometriosis research agenda and act as a catalyst for more funding opportunities for research in this area.

If you would like further information or want to be involved please contact Professor Andrew Horne.

What is endometriosis?

Endometriosisis a disease in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue. It is primarily found on the pelvic peritoneum, on the ovaries, in the recto-vaginal septum, on the bladder, and bowel [1,2].

Endometriosis affects an estimated 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49), which is approximately 176 million women in the world [3-4].

However, endometriosis can start as early as a girl’s first period and the menopause may not resolve the symptoms of endometriosis, especially if the woman has scar tissue or adhesions from the disease and/or surgery.

The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, and infertility, and can impact on general physical, mental, and social well being [1,5].

A general lack of awareness, by both women and health care providers due to a “normalisation” of symptoms results in a significant delay from when a woman first experiences symptoms until she eventually is diagnosed and treated [5].

There is no known cure and, although endometriosis can be treated effectively with drugs, most treatments are not suitable for long-term use due to side-effects [1,3]. Surgery can be effective to remove endometriosis lesions and scar tissue, but success rates are dependent on the extent of disease and the surgeon’s skills.

There is no known cause of endometriosis.