A Study to Explore the Impact of Endometriosis in the United Kingdom: A Qualitative Content Analysis

*Corresponding author: Babu Karavadra*, Paul Simpson, Edward Prosser-Snelling, Edward Mullins, Andrea Stöckl and Edward Morris

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original research

Abstract

Objective

To gain insight into the areas that impact women with endometriosis.

Design

A qualitative content analysis of an online survey.

Setting

Online questionnaire via Endometriosis UK.

Population

Women diagnosed with endometriosis of any age range.

Methods

Free-text online questionnaire through Endometriosis UK completed by women. Results were analysed using NVivo version 9, qualitative analysis software. The software creates links between common words (codes), and these links allow data to be placed in nodes (called themes) which are then developed into categories. Content analysis was used to understand this data.

Main outcome measures

Impact of endometriosis on women’s lives.

Results

In total, 1872 questionnaires were returned but not everyone was able to identify ten separate features that affected them. As such, 1872 women provided at least one area that affected them, 1800 provided two areas, 1770 provided three areas and 1600 provided four areas. The results show that the main areas of concern for these women were pain (53%), heavy menstrual bleeding (11%), low mood (8%) and the perceived lack of understanding displayed by other people (7%). Other important factors were fertility concerns, impact on employment, problems with the medical team and uncertainty. These then impacted on their daily life whereby some women felt “guilty” for not ‘being a normal mother’. A key term that resonated was that endometriosis is an “invisible disease”.

Conclusion

This analysis provides us with insight into the complex psycho-social factors that interact with bio-physical symptoms. Further research is required in sub-population groups such as teenagers and ethnic minority women to explore any differences in impact and how care can be guided accordingly.

Keywords

Endometriosis; Impact; Qualitative methods; Quantitative methods; Online survey.