Characteristics of women diagnosed with endometriosis in England: a decade of diagnoses, 2011-2021
Authors: Bunk Hannah , Campbell Emma , Sharp Gemma C , Nafilyan Vahé , Ayoubkhani Daniel , Ward Isobel L 
Published: December 2024

Introduction

Endometriosis is a chronic disease and the second most common gynaecological condition in the UK, affecting approximately 1.5 million women. It is characterised by the growth of endometrial tissue outside the uterus, causing varying symptoms and having far reaching socioeconomic impacts. We utilise population level hospital admissions data and Census 2011 to examine the characteristics of women diagnosed with endometriosis in England.

Methods

Using a retrospective cohort design, we used Hospital Episode Statistics (HES) between 2011 and 2021, we linked health data to detailed sociodemographic information from Census 2011, providing individual population-level information on self-reported characteristics. Our outcome of interest was an endometriosis diagnosis in hospital. Our exposures were age on Census Day (five-year age bands), ethnic group, Index of Multiple Deprivation (IMD) decile, household National Statistics Socio-economic Classification (NS-SEC), highest qualification, country of birth, main language, self-reported general health, self-reported disability, rural/urban classification, region, and upper tier local authority (UTLA). We calculated crude and age-standardised rates, and odds of receiving a diagnosis using logistic regression models adjusted sequentially for age and health.

Results

Our results highlight differences in underlying prevalence of endometriosis by sociodemographic characteristic, as well as capturing differences in access to services for women receiving a diagnosis of endometriosis in an NHS hospital. The likelihood of receiving an endometriosis diagnosis was highest in the "White British", "Black Caribbean" and "Mixed White and Black Caribbean" ethnic groups, and lowest in the "Chinese", "Arab" and "Black African" ethnic groups. Women living in the most and least deprived areas were least likely to have an endometriosis diagnosis, possibly reflecting lower access to healthcare services in the most deprived group and more use of private healthcare in the least deprived group. Women self-reporting to be in bad health, or disabled, were more likely to have had an endometriosis diagnosis compared those in very good health or non-disabled women, respectively.

Conclusions

Our results demonstrate significant sociodemographic differences between groups of women receiving an endometriosis diagnosis in England. These results should be used to inform healthcare policies to better support groups of women who are most affected by endometriosis and barriers to receiving a diagnosis. Subsequent work should explore presentations in primary care, as well as the broader socioeconomic ramifications of endometriosis.

Research in context

What is already known on this topic

Endometriosis is a common gynaecological condition which has debilitating impacts across many domains, including physical, psychological, social and economic. It is estimated to affect 1 in 10 reproductive age women in England, however evidence on the differences in endometriosis diagnosis by sociodemographic characteristics is lacking.

What this study adds

Our study utilises population-level Census and HES data for England to estimate crude and age-standardised rates of endometriosis diagnosis, and odds of receiving an endometriosis diagnosis by a range of sociodemographic characteristics. We estimate the prevalence of an endometriosis diagnosis to be approximately 2% of reproductive age women in our linked population, with an average age at diagnosis of 35 years. Women living in the most and least deprived areas were least likely to have an endometriosis diagnosis; this possibly reflects less access to healthcare services in the most deprived group and more use of private healthcare in the least deprived group. The likelihood of receiving an endometriosis diagnosis was highest in the "White British", "Black Caribbean", and "Mixed White and Black Caribbean" ethnic groups, and lowest in the "Chinese", "Arab", and "Black African" ethnic groups. This study is the most comprehensive analysis of the characteristics of women with an endometriosis diagnosis in England to date.

How this study might affect research, practice or policy

This research provides important information to gynaecologists, clinicians and other allied health professionals, as well as policy makers, to illustrate the prevalence of endometriosis and the groups most affected by endometriosis and barriers to receiving a diagnosis. In the Women’s Health Strategy for England, menstrual health and gynaecological conditions were identified as one of the priority areas, with a call for evidence and investment in women’s health research.