Hidden suffering

An Edinburgh team is conducting vital research into how to improve the lives of more than 170 million women globally affected by endometriosis, a debilitating condition that often goes undiagnosed.

Andrew Horne with research team
Andrew Horne and his research team are conducting vital research into endometriosis,\npart funded by\na £100,000\ndonation from the Charles Wolfson Charitable Trust

While 80 per cent of adults are familiar with diabetes, fewer than 20 per cent have heard of endometriosis. That startling figure, provided by Endometriosis.org, emphasises one of the reasons why it is such a difficult condition to research, and why developing better management and treatment remains a challenge. At least 176 million women of child-bearing age across the world are affected. In the UK, the figure is about 1.5 million, with an estimated 125,000 in Scotland, many undiagnosed. Here, Professor Andrew Horne, co-director of EXPPECT (Excellence in Pelvic Pain and Endometriosis Care and Treatment) at the Royal Infirmary of Edinburgh campus, explains how a £100,000 donation from the Charles Wolfson Charitable Trust will support their vital research into the condition, in partnership with NHS Lothian.


What is EXPPECT hoping to achieve?

We want to improve the quality of life for women with chronic pelvic pain and endometriosis by developing novel, personalised treatments. We formed EXPPECT Edinburgh in 2014 to bring together individuals involved in clinical care with discovery scientists to establish a hub within which innovative approaches to treatment can be developed.

What is the clinical expertise at EXPPECT?

We have a multi-disciplinary team that provides treatment for the management of all grades of endometriosis. It is one of only two British Society of Gynaecological Endoscopy accredited centres in Scotland.

Why does such a widespread problem struggle to identify funding for research?

Part of the problem is that endometriosis is a “hidden” condition and still has a certain taboo around it. Diagnosis and management can be disjointed, leading to sub-optimal treatment. We are drawing together those different elements so that we have a much fuller picture.

You have spoken of “repurposing” existing drugs. What does that mean?It can take 25 years to bring a new drug to market. We are identifying novel drug targets to explore possible ways forward by repurposing compounds for other conditions. Endometriosis cells behave in a way similar to cancer cells. It may be that existing cancer drugs, for example, could be modified to treat endometriosis. Our researchers have developed a human tissue/fluid biobank with samples from women with chronic pelvic pain who do or do not have endometriosis. Collecting and archiving samples, according to rigorous protocols, has allowed us to collaborate with other research internationally and to gain new insights into disease-related pathology.

The team is looking at the repurposing of drugs developed for other indications that we have tested in our unique preclinical models of endometriosis, as well as fresh approaches based on new insightsgained from studies on disease aetiology.

What about funding?

We have secured £10 million in research funding for endometriosis from a range of sources. A research project like this constantly needs more funding, and every grant and donation is hugely important. The £100,000 from the Charles Wolfson Charitable Trust will cover the cost of a research scientist who will work with us to identify potential drug targets that could lead to a better way of managing pain and related symptoms – or even cure – for women with endometriosis.

Debilitating disorder

Endometriosis is a condition where tissue similar to the lining of the uterus is found elsewhere in the body (endometriosis lesions).

The lesions can be found anywhere in the pelvic cavity. It can even be found in scar tissue from a caesarean section.

Sufferers can experience debilitating pelvic pain and infertility, leading to time off work or study, low mood and a breakdown in relationships. Sadly, there is no cure yet.

Find out more

Professor Andrew Horne and Carol Pearson’s book, Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with your Symptoms, is available now.

Related links

One health