A BBC endometriosis research study has revealed the devastating impact endometriosis is having on women’s lives – including their education, career, sex life and mental health, with around half stating they have experienced suicidal thoughts.
The BBC gathered the experiences of more than 13,500 women with endometriosis in the UK, making it the largest study of its kind. Of those who took part:
- Nearly all said it had badly affected their career, sex life and mental health
- Most said it had impacted on their education
- Most said they rely on prescription painkillers every month, including potentially addictive opioids
- Around half said they had experienced suicidal thoughts.
Commenting on the research, Emma Cox, Chief Executive of Endometriosis UK said: “This shocking new research is a stark reminder that both society and the NHS need to wake up and accept that endometriosis is a chronic condition that cannot be brushed under the carpet.
“Endometriosis affects over 1.5 million women in the UK and the impact it can have on all aspects of a person’s life – both physically and mentally – must be recognised. Currently the diagnosis time for endometriosis is an unacceptable 7.5 years on average; this must come down.
“The potentially devastating impact this condition can have on people’s physical and mental health cannot be overstated. Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time.”
Minister for Women’s Health Caroline Dinenage said: “Too often across society women’s bodies are seen as an inconvenience, with their symptoms and health concerns not taken seriously enough. Thankfully, awareness of endometriosis and other painful and debilitating menstrual conditions is increasing – but there is still a long way to go.
“I urge clinicians to play their part in breaking down the ongoing stigma around endometriosis by ensuring they follow NICE guidelines and encourage employers to rise to the challenge by creating supportive and flexible ways to help those living with these conditions.”
Centre for Mental Health Chief Executive Sarah Hughes added: ““Having a physical illness significantly increases our chances of having poor mental health. Living in constant pain and struggling with daily life, with relationships, with conception and with work add to the burden for women living with endometriosis. These figures are a stark reminder that physical and mental health are not felt separately, yet health services still too often cannot deal with them both at the same time. Women living with endometriosis deserve support for their mental health as well as for the condition itself and its many effects on a woman’s life. Health services need to wake up to the hidden and unspoken emotional pain too many women experience without the help they need to manage such a poorly understood and distressing condition.”
Endometriosis UK is calling on the Government to face up to the reality that failing those with endometriosis impacts significantly on the economy, costing the UK £8.2bn a year in treatment, loss of work and healthcare costs, as well as with the significant impact on the individual’s physical and mental health, and ensure that:
- The NHS wakes up to the scale of endometriosis and plans services to support all those who need it.
- The NICE Guidelines on Endometriosis: Diagnosis and Management (2017) are properly implemented across the UK. These state the minimum care those with the disease should have access to, but have yet to be fully implemented.
- Invest in research, to find the cause of the disease, better treatment and management options, and one day a cure.
The APPG on Endometriosis has already committed to launching an inquiry into endometriosis which will follow the BBC’s research. Sir David Amess, Chair of the APPG on Endometriosis added: “The research which has been published today shows the devastating impact that endometriosis can have on a person’s life – including their education, career, and mental health. The APPG is committed to raising awareness of this condition and representing the interests of people who live with it. We will therefore be launching an inquiry in the near future to hear from patients and healthcare professionals about their first-hand experiences, before making recommendations to the Government. It is essential that women with endometriosis are given the right support at the right time.”