Working women are too often left to deal with endometriosis alone. But big changes could be coming

Endometriosis is a long-term and invisible gynaecological condition that affects around 1.5 million women^[1] in the UK alone. It’s known for its unpredictable and debilitating symptoms, like chronic pelvic pain, heavy periods and fatigue. But many women face outdated practices in the workplace that just don’t accommodate the reality of the condition.

Women with endometriosis can be unfairly thought of as unreliable or weak^[2] for not being able to adhere to conventional ideas of productivity or working hours. Times could be changing, though, with the UK’s employment rights bill^[3], which is making its way through parliament.

The bill could mark a significant turning point by framing menstruation and related health conditions as legitimate workplace issues. What this could mean, in practice, is a move towards employers taking measures such as offering flexible hours as the norm rather than the burden falling on individual women to make the case for what they need.

But as a researcher on women’s health and wellbeing at work, I believe the bill must go further. If this legislation is to represent a new era for women, it should explicitly include provisions to support all reproductive health as part of its gender equality plans. After all, it has been estimated that menstrual health issues, including endometriosis, cost the UK economy £11 billion^[4] per year due to worker absences.

Get your news from actual experts, straight to your inbox. Sign up to our daily newsletter^[5] to receive all The Conversation UK’s latest coverage of news and research, from politics and business to the arts and sciences. Workers deserve a framework that supports the entire lifecycle of women’s health at work – from menstruation to miscarriage to menopause and beyond. Incorporating menstruation action plans alongside the bill’s proposed menopause action plans could include measures to destigmatise menstrual health. This could help workers feel safe sharing their symptoms or condition. It could also involve training for managers so conversations focus on support as opposed to the burden of medical proof. And clearly, sick leave policies should not penalise women for symptoms that can frequently be irregular. Historically, endometriosis was labelled the “career woman’s disease”^[6]. The suggestion was that it was a consequence of women delaying motherhood for paid work, and the stressful professional lives of women. These outdated theories framed endometriosis as the result of ambition. But the echoes persist, reinforcing the idea that women must silently manage their condition^[7] at work. This framing, rather than recognising that endometriosis can in some cases be considered a disability, diverts attention from failures in workplace policies and healthcare systems. Women with endometriosis can lose between 1.9 and 15.8 work hours^[8] per week managing painful and fluctuating symptoms within rigid work schedules and unaccommodating workplaces. However, having the permission to adjust where and how you work can help with managing symptoms^[9] and can also help to prevent them. For example, having the flexibility to start work later in the day for pain that presents in the morning, or to work from home on bad pain days, can make it easier to manage symptoms, and actually increases productivity^[10]. On the other hand, rigid working days can cause stress that exacerbates symptoms. Issues like stigma, disbelief of the level of pain and other symptoms, and the inability to deal with symptoms when they come on (by taking frequent breaks or using a hot water bottle, for example), as well as unfriendly absence policies, make work more difficult than it needs to be. This time lost can also place women in a precarious position, forcing them to choose between concealing their pain or risking career setbacks by disclosing their condition. Workplaces are typically designed for those who can maintain uninterrupted schedules^[11], leaving workers with symptoms that come and go at a disadvantage. My research^[12] on “endo time”, which will be published later this year, reflects this. It highlights how women with endometriosis must constantly adjust their routines to manage symptoms. This is a reality at odds with rigid workplace expectations. It can mean having to think about every day in advance like “strategising a war”^[13]. The cost of managing endometriosis extends beyond physical pain. Women with endometriosis in the UK can experience reduced earnings^[14] alongside lost promotions, bonuses and clients. A major constraint can be the need to take frequent sick days. This is often treated as a performance issue rather than a medical issue. As such, women can be left ducking and diving, and trying to work out little systems^[15] and workarounds for fear of losing their jobs. Women with endometriosis may also be pushed into part-time or insecure work, or feel compelled to become self-employed, trading stability for flexibility. Ultimately, left unsupported, endometriosis can make it extremely difficult for women to work within standard schedules and timetables^[16]. Yet, despite its prevalence, endometriosis research^[17] remains underfunded, contributing to continued misunderstandings and inadequate support.

The employment rights bill could be a significant step forward. It will require organisations with more than 250 employees to develop gender equality plans, including menopause support. The bill also aims to promote transparency around gender pay gaps and strengthen flexible working rights. These provisions would undoubtedly support the economic and emotional costs of working with endometriosis.

Endometriosis is more than a health challenge. It is a lens through which we can understand broader issues around gender, health and work. By pushing for more comprehensive policies, the UK can shift the narrative from one of individual struggle to one of collective responsibility. This could create a workplace culture where women can thrive without being penalised for their health.

The bill presents an opportunity to do just that – but only if it goes far enough to address the full spectrum of reproductive health challenges that women face throughout their careers.

References

1. ^{^} 1.5 million women (www.nhs.uk)
2. ^{^} unreliable or weak (www.bbc.com)
3. ^{^} employment rights bill (bills.parliament.uk)
4. ^{^} £11 billion (www.nhsconfed.org)
5. ^{^} Sign up to our daily newsletter (theconversation.com)
6. ^{^} “career woman’s disease” (www.proquest.com)
7. ^{^} manage their condition (onlinelibrary.wiley.com)
8. ^{^} 1.9 and 15.8 work hours (www.jmcp.org)
9. ^{^} managing symptoms (oro.open.ac.uk)
10. ^{^} increases productivity (pubmed.ncbi.nlm.nih.gov)
11. ^{^} uninterrupted schedules (journals.sagepub.com)
12. ^{^} My research (oro.open.ac.uk)
13. ^{^} “strategising a war” (www.butyoudontlooksick.com)
14. ^{^} reduced earnings (www.ons.gov.uk)
15. ^{^} little systems (oro.open.ac.uk)
16. ^{^} schedules and timetables (dsq-sds.org)
17. ^{^} endometriosis research (www.endometriosis-uk.org)
18. ^{^} tuaindeed/Shutterstock (www.shutterstock.com)