A report published today by the All-Party Parliamentary Group on Endometriosis supported by Endometriosis UK has found that nearly half (47%) of women with endometriosis have lost income because of their symptoms. Over a quarter (28%) reported leaving a job and 39% said they’ve experienced financial hardship because of the disease.
Endometriosis is a chronic, often debilitating condition where tissue similar to the lining of the womb grows elsewhere in the body. It’s common, affecting 1 in 10 women and those assigned female at birth (1.5 million in the UK are currently living with endometriosis). Symptoms vary from person to person and can be severe, often occurring during the working age stage of life. Common symptoms include; pelvic pain, painful periods that interfere with everyday life, heavy menstrual bleeding and fatigue.
The inquiry report found that workers with endometriosis are often expected to adapt themselves to rigid systems rather than being offered practical support. Fewer than half of employee survey respondents had received workplace adjustments, while 94% believed employers lacked a good understanding of endometriosis. The inquiry’s survey of employers helps explain this gap: 72% said their organisation provided no training or guidance on women’s health, and only 16% reported receiving manager training for health conditions.
The results on employees’ long term job prospects and wider wellbeing are enormous, 40% reported turning down career opportunities due to the lack of endometriosis support and 62% have worried about losing their job.
If left untreated endometriosis symptoms can worsen. Data released by Endometriosis UK this year revealed that the average time to receive a diagnosis in the UK has now reached 9 years and 4 months. These lengthy waits for diagnosis and treatment often add to the financial pressures felt by individuals suffering with endometriosis symptoms and the consequences of prolonged work absence or reduction can persist through lower pension contributions, reduced savings and long-term damage to earning capacity.
The report notes that the impact of insufficient support is felt by business and the wider economy as well as individuals. Around 2.8 million people are currently economically inactive because of long-term ill-health, while the Government’s Keep Britain Working review estimates that health-related economic inactivity costs the UK £212 billion each year through lost productivity, increased welfare spending and greater pressure on public services.
Hayley Locksley, age 40 from Bedfordshire, used to work as a SEN Support Teacher. She said:
“Severe endometriosis has taken away my ability to work and earn a living, leaving me facing financial hardship I never expected. As a single mum, losing that financial security is frightening – not knowing if I’ll be able to afford the essentials or give my daughter the stability she deserves.”
Faye Farthing, Head of Communications and Campaigns at Endometriosis UK, said:
“Nobody should be losing income or fear losing their job due to endometriosis. Practical, simple adjustments can make a massive difference to both the employer and the employee.
“Far too many businesses lose talent, and we’re calling on the Government to step in with national guidance and requirements to ensure workplaces are genuinely supportive and nobody else has to leave their job or end up in financial difficulty due to their condition.
“Flexible hours, home or hybrid working where possible, changes to duties or shifts, additional breaks, suitable uniforms, immediate toilet access, phased returns and paid time for medical appointments can help people remain productive. Support must also work for staff in transport, care, retail, healthcare, manufacturing and other roles where working from home is impossible.
“The economic and human impact of failing to retain those with endometriosis in the workplace is clear and can no longer be ignored. The Government must act now if it is to truly support those with endometriosis at work”.
Kirsteen Sullivan MP, Chair of the All Party Parliamentary Group on Endometriosis, added:
“I am incredibly grateful to everyone who trusted us with their experiences, as well as the employers, clinicians and organisations who contributed. We have a responsibility to turn that evidence into action, so that women with endometriosis can remain in work, progress in their careers and receive the understanding and support they deserve.”
The report makes several recommendations, including the establishment of UK Government guidance for supporting people with endometriosis, menstrual health conditions and other long-term fluctuating conditions at work.
Campaign Collective is a campaign partner to Endometriosis UK.