Health charity Wellbeing of Women partners with Scottish Government to advance research in endometriosis

• Endometriosis affects 1.5 million women in the UK, yet it remains a chronically under-funded area of women’s health  
• There have been few advances to diagnose and treat this extremely painful condition, for which women can wait 8 years, on average, for a diagnosis 
• There is no cure for endometriosis, which can significantly affect daily life and fertility  
• A funding award of up to £250,000 is available for researchers in Scotland – the first country in the UK to introduce a Women’s Health Plan   

A new partnership between leading health charity, Wellbeing of Women, and the Scottish Government aims to unlock new advances in endometriosis research to improve outcomes for the 1.5 million women in the UK who suffer from this debilitating condition. 
 
A grant of up to £250,000 is open to applications from researchers based in Scotland. It will enable research to improve prompt diagnosis and ensure the most effective treatments and support for women and girls.

Endometriosis occurs when tissue similar to the lining of the womb grows elsewhere in the body, usually around the reproductive organs, bowel and bladder.

It is the second most common gynaecological condition and is estimated to cost the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.

Despite this, the condition remains poorly understood and chronically under-funded.

No-one currently knows what causes endometriosis and many women have to wait for around eight years, sometimes longer, before receiving a diagnosis.

Currently there is no cure and relatively few treatment options are available. These include lifestyle changes such as improved diet and physical activity, as well as painkillers and hormonal treatments, including the contraceptive pill and the Mirena coil, and in more severe cases, surgery.

Suzanne McKee, 37, was diagnosed with endometriosis in 2016 after struggling for several years. The mother-of-one, who lives in Livingston, West Lothian, said: “I’ve had endometriosis since the age of 11 and it took more than two thirds of my life, 22 years, to diagnose me. I was always told I was having a bad period and to give it time for it to settle.

“Research is really important to find better ways to diagnose and treat it. The more research there is, the more likely it is that women will be able to avoid early menopause, multiple surgeries or coils, injections and implants and have a better quality of life.” 

Endometriosis can be a very difficult condition to live with, both physically and emotionally.

Symptoms can include pain in the lower abdomen or back that usually worsens during a period, heavy bleeding, pain during sex and bowel movements, and in some cases, difficulty becoming pregnant. It can also lead to feelings of depression.

Key priority themes for funding include investigating a possible cure; the development of a non-invasive screening tool to help with diagnosis; and the most effective way of managing fatigue and the emotional and psychological impact of living with the condition.

Professor Dame Lesley Regan, Chair of Wellbeing of Women, said:  “We are delighted to be partnering with the Scottish Government, the first in the UK to introduce a Women’s Health Plan.

“After decades of neglect, it is long overdue to significantly invest in and advance research in endometriosis and enable improvements in the care of millions of women and girls who are affected by this debilitating condition.

“It is shocking that so many women, prior to their diagnosis, are told that their excessive pain from this condition is ‘normal’ or even ‘in their head’. This is completely unacceptable, and we need to recognise and listen to their concerns, and ensure health services and research meet their needs.” 

Maree Todd, Minister for Public Health, Women’s Health and Sport in Scotland, said: “Scotland is the first country in the UK to introduce a Women’s Health Plan, with endometriosis being one of its early priorities.

“There are a number of actions to help improve care and support for those with endometriosis, including a vital action to invest in further research to develop much needed improvements into treatment and management options for the condition. 

“I am pleased that we will be collaborating with Wellbeing of Women on this important research call and helping to address the need for further endometriosis research. As women make up 51 per cent of the population, it is absolutely essential that clinical research reflects society, and we begin to reverse the gender gap that persists across women’s health.”

Suzanne added: “I am really pleased that the Scottish Government is taking endometriosis seriously.

“Sadly, the condition has been neglected for many years, with little awareness and funding for improving healthcare services for women and girls. I wouldn’t want my daughter to go through what I did.” 

Read about Suzanne’s experience here.