Wanted: 1,000 women who want to help relieve the pain of endometriosis

Marie Macklin was on a Christmas shopping trip in Glasgow in 1997 when she collapsed in a shop and was rushed to hospital in severe pain. “My dad arrived and I said to him, ‘I’m going to die’,” the businesswoman and entrepreneur recalled.

Macklin, then 32, was diagnosed with endometriosis, a condition in which cells similar to those in the uterus grow elsewhere in the body and can cause severe, chronic pain. The type that afflicted Macklin was ovarian endometriosis (sometimes called “chocolate cysts”). Macklin’s cysts burst inside her.

After surgery, in which Macklin went into cardiac arrest, she woke up to find she had undergone a complete hysterectomy. “Everything was taken out,” she said. It took months for her to recover.

She is now ready to take on the disease that has so brutally changed her former life. Later this month, Macklin – who later founded the HALO Urban Regeneration Company – will join scientists at the University of Edinburgh to lead a new project called ENDO1000aimed at tackling a disease now recognised as a cause of widespread suffering around the world. “It’s an opportunity to tackle endometriosis,” she told the Observer last week.

A total of 1,000 patients with endometriosis are being recruited for the project. Over a two-year period, each woman will be asked to record her symptoms and any treatments she tries, collect samples of blood, urine, stool and saliva at home, and be given a smartwatch to monitor her symptoms, as well as the effect of the condition on sleep patterns and other aspects of daily life. Diets will be closely examined and, working with international teams of scientists, researchers will attempt to identify genetic and other risk factors that influence the onset of the disease.

Scientists say there is an urgent need for such insights into the causes and triggers of endometriosis. The condition is now thought to affect 200 million women worldwide. The most common symptom is chronic pelvic pain, as well as painful periods, and pain during sex, urination and bowel movements. Many sufferers also have difficulty conceiving, while others suffer from severe fatigue.

“It’s as common as diabetes in women in the UK,” said Prof Andrew Horne from the University of Edinburgh’s Centre for Reproductive Health. “But by comparison, we know so little about endometriosis. And we don’t contribute to the billions we spend on diabetes every year.

“Once endometriosis is diagnosed, there is little doctors can do other than try to relieve the significant discomfort a patient often goes through. Surgery and hormones can often be used to treat it, but in about 30 percent of cases these either don’t work or have unpleasant side effects.”

Additionally, scans and blood tests are largely ineffective in detecting the condition, and it is usually only identifiable through surgery, Horne said. As a result, women wait an average of about seven years before it is possible to receive a definitive diagnosis of endometriosis.

Earlier this year Horne moved a clinical trial of the drug Dichloroacetate for patients with endometriosis to the second stage, in the hope that it could provide a new treatment for the disease.

Last year he decided to start the ENDO1000 project to raise awareness of endometriosis and at the same time look for new ways to detect the disease and identify possible new treatments.

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

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

Some studies have shown that the condition runs in families, but no specific genes have been identified yet. “I think we’re going to find that both environmental and family factors play a role,” Horne said.

Recruitment for 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 make a real difference to those suffering from this debilitating condition.”