Endometriosis is a chronic disease estimated to affect 1 in 10 women of reproductive age, with symptoms varying from person to person. At the Office for National Statistics (ONS), we’ve produced the first national-scale evidence showing the impact of an endometriosis diagnosis on women’s ability to work in England. By securely linking de-identified health and income data with demographic information from the census, we’ve been able to produce data showing the effect of a diagnosis on earnings and employment status.
Shining a light on women living with endometriosis
Between 2011 and 2021, we found that around 2 in every 100 women of reproductive age in England received an NHS hospital diagnosis of endometriosis. The average age at diagnosis was 35, suggesting that women wait many years for a diagnosis, given symptoms often start during adolescence.
Diagnosis rates vary by ethnicity and socioeconomic background. Women identifying as White British, Black Caribbean or Mixed White-Black Caribbean were most likely to receive a diagnosis in an NHS hospital. Rates were lowest among Chinese, Arab and Black African women. Women in both the most and least deprived areas were also less likely to receive an NHS diagnosis. This could indicate that women in poorer areas faced barriers to healthcare access, and those in more affluent areas may be using private healthcare instead.
Looking at employment, women aged 25 to 54 who were diagnosed with endometriosis earned, on average, £130 less per month five years after receiving a diagnosis compared with the two years before diagnosis. This results in a total decrease of £4,500 over the five years after receiving a diagnosis. Over the same time period, the likelihood of being in paid employment also dropped by around three percentage points. Even those who remained in work saw their monthly pay fall by £56 in the same timeframe, with a total decrease in salary of £2,300 over five years. Taken together, this suggests that women may be leaving employment, and those who are in work may be moving to lower-paid jobs or reducing their hours.
This new study puts an important spotlight on the challenges faced by those with endometriosis at work. It’s a step towards enabling those with the disease to thrive in their careers. Those with endometriosis symptoms shouldn’t have to worry about losing their job, having to change career, or feel restricted in the types of work they can do.
A clearer picture through data linkage
We completed this study using the Public Health Data Asset (PHDA), which links:
- NHS hospital admission records
- 2011 census data
- HM Revenue and Customs payroll data
- ONS birth and death registrations
Linking these data allowed researchers to better understand what effect a diagnosis of endometriosis has on women’s working lives.
The power of linking data to improve lives
These are the first data for England linking health and income data in this way. For patients and charities, the numbers provide evidence of the costs of a diagnosis on women’s employment. For policymakers, they highlight the inequality in receiving a diagnosis and offer the chance to improve employment opportunities and support for women living with the condition.
This study contributes to addressing the lack of research into women's health conditions. It makes sure that women's voices are heard and addresses the different issues they face. This can help to improve access to services and give a greater understanding of how women’s health affects their experience in the workplace.
By combining de-identified records, we’ve demonstrated the power of linking data securely and shown how public data can be used to generate insights that improve lives.
This study is also part of a wider ONS programme examining the employment effects of healthcare interventions. Similar analyses of bariatric surgery, the NHS Talking Therapies programme, and musculo-skeletal treatments have also been published. These studies show how linking different datasets can answer important questions about public services that would otherwise be impossible to investigate.
To find out more, read The impact of an endometriosis diagnosis on monthly employee pay and employee status, England: April 2016 to December 2022.
This project was funded by the UK Government's Labour Markets Evaluation and Pilots Fund - 2024 to 2025.