Wanted: 1,000 women to help ‘get even’ with the agony of endometriosis

Marie Macklin was on a Christmas shopping trip in Glasgow in 1997 when she collapsed in a store and was taken to hospital in severe pain. “My dad arrived and I told him, ‘I’m dying’,” recalled the businesswoman and entrepreneur.

Macklin, then 32, turned out to be suffering from endometriosis , a disease in which cells similar to those that line the womb grow elsewhere in the body and can cause severe, chronic pain. The type affecting Macklin was ovarian endometriosis (sometimes referred to as ‘chocolate cysts’). Macklin’s cysts were bursting inside her.

After an operation, during which Macklin went into cardiac arrest, she awoke to find she had been given a full hysterectomy. “Everything was taken away,” she said. It took months for her to recover.

She is now poised to take up the fight against the disease that so savagely altered her earlier life. Later this month, Macklin – who went on to found the HALO Urban Regeneration Company – will join scientists at Edinburgh University to spearhead a new project, called ENDO1000 , aimed at tackling a disease that is now recognised to be a cause of widespread suffering across the globe. “It’s a chance to get even with endometriosis,” she told the Observer last week.

A total of 1,000 patients with endometriosis will be recruited to the project. Over a two-year timeframe, each woman will be asked to record their symptoms and any treatments they try, collect samples of blood, urine, faeces and saliva at home, and be given a smartwatch to monitor their symptoms, as well as the condition’s effect on sleep patterns and other aspects of daily life. Diets will be closely scrutinised and, in collaboration with international teams of scientists, researchers will try to pinpoint genetic and other risk factors that influence the disease’s onset.

Such insights into the causes and triggers of endometriosis are urgently needed, scientists say. The condition is now believed to affect up to 200 million women worldwide. Its most common symptom is chronic pelvic pain as well as pain with menstruation, and pain during sex, urination and bowel movements. Many sufferers also have trouble getting pregnant, while others suffer from severe fatigue.

“It is as common as diabetes in women in the UK, ” said Prof Andrew Horne, of Edinburgh University’s Centre for Reproductive Health. “Yet in comparison we know so little about endometriosis. Nor do we contribute anything like the billions that we spend on diabetes every year.

“Once you have diagnosed endometriosis, there is not a great deal that doctors can do except try to alleviate the considerable discomfort that a patient often goes through. Surgery and hormones can often be used to treat them but in around 30% of cases these don’t work, or have unpleasant side effects.”

In addition, scans and blood tests are largely ineffective in detecting the condition and it is usually identifiable only by carrying out surgery, said Horne. As a result, women wait on average about seven years before it is possible to get a definitive diagnosis of endometriosis.

Related: The science on endometriosis is finally breaking through – so why do treatments feel stuck in the past? | Lucy Pasha-Robinson

Earlier this year, Horne moved a clinical trial of the drug Dichloroacetate for endometriosis patients into its second phase, in the hope it could offer a new treatment for the disease .

He decided to launch the project ENDO1000 last year in order to raise awareness of endometriosis, while also seeking to find new ways to detect the disease and to identify possible new treatments.

“I wanted to start with 1,000 patients that we would monitor very closely and realised I would need a million pounds to get started on the project. But I was getting nowhere. Then I contacted Marie Macklin. I thought she might give us £10,000 or something. But, incredibly, she came straight back to me and told me, ‘I’m not giving you money but I’ll give you my time to help you set up a campaign and raise £1m’. And that is just what she and her colleague, Frank Gormanley, are doing now.”

A crucial point for Macklin is the need to treat endometriosis not just as a health problem. It is also an economic one, she says. “It causes so much pain and discomfort for women and prevents them from working. It affects the economy and it affects women’s rights,” she told the Observer .

Some studies have indicated that the condition runs in families, but no particular genes have been identified to date. “I think we will find both environmental and familial factors are involved,” said Horne.

Recruitment to the project will begin early next year, with the aim of running ENDO1000 for at least two years, he added. “Hopefully we will learn a lot and be able to start to make a real difference for those suffering from this debilitating condition.”