Exploring the Impact of Polycystic Ovarian Syndrome (PCOS) on Reproductive Experience and Expectations Through a Feminist and Life Course Approach

Endometriosis is a chronic condition where cells similar to those found in the lining of the uterus are present elsewhere in the body, reacting to the menstrual cycle and causing inflammation, pain, and the formation of scar tissue. In the UK, approximately 1 in 10 women and those assigned female at birth are affected, totalling over 1.5 million individuals. Symptoms include chronic pelvic pain, painful periods, bowel and bladder discomfort, fatigue, painful sex, and difficulty getting pregnant.

The condition significantly impacts working lives, leading to increased absenteeism and reduced productivity (Culley et al., 2013 Soliman et al., 2017). The average annual productivity loss per person with endometriosis in the UK is estimated at £5,500 (Simoens et al., 2012). Individuals with endometriosis often have lower salaries, slower salary growth (Estes et al., 2020), and higher unemployment rates (Facchin et al., 2019).

Career choices and trajectories are also affected, with many unable to work in their desired roles (Sperschneider et al., 2019). An All Party Parliamentary Group (APPG) inquiry found that 55% of respondents frequently had time off work, 38% were concerned about job loss, and 35% had reduced income due to endometriosis (APPG, 2020). Consequently, endometriosis has been identified as a policy priority in England's Women's Health Strategy (2022).

Despite recent advancements and some large scale economic data, there is limited understanding of the lived experience of managing endometriosis in the context of formal employment. While qualitative social scientific research has explored other aspects of the condition (Hudson and Law, 2022 Rea et al., 2020), there is a need for research that examines how the unique aspects of endometriosis are negotiated in work settings.

There is also a notable absence of studies that include employer perspectives. This project seeks to fill these gaps through collaborative research involving individuals with endometriosis, employers, and third sector organisations.

The aim of this project is to explore the organisational framings of endometriosis, managerial practices and experiences, and the lived experiences of individuals with endometriosis in the context of the formal labour market. Objectives: To improve understanding of how endometriosis intersects with labour market engagement and career pathways

To understand how workplace management policies and procedures and organisational framings of endometriosis operate, are organised and impact on lived experiences of endometriosis To identify how endometriosis is understood and managed by employers To contribute to theoretical models of gender, illness, disability, embodiment, impairment and the labour market

To co produce recommendations designed to enhance Endometriosis UK's Endometriosis Friendly Employer (EFE) scheme

The study will use a mixed method design as well as c production methods to create recommendations for practice and to inform and enhance the EFE scheme, and will include both employers and individuals with endometriosis. The project involves collaboration with Endometriosis UK, the UK's leading endometriosis charity, with the student spending time on placement with Endometriosis UK.

It will be supervised by Professor Nicky Hudson and Dr Caroline Law at De Montfort University, and undertaken in collaboration with Emma Cox, Endometriosis UK CEO.