Endometriosis UK: Measuring the quality of life of women & those assigned female at birth living with endometriosis (13 September 2024)

Summary

The experience of living with endometriosis appears as frustrating and painful today as it was at the turn of the millennium, worrying new data shows. 

Many with this common disease have a strong sense of powerlessness, and a negative self-image, according to new research, based on a survey of 1,800 patients carried out by Endometriosis UK and researchers at Leeds Beckett University (LBU) . 

The report shows that, on average, patients surveyed in 2023-24 rated their feelings of ‘control and powerlessness’ as 72.3 out of 100 (with 0 being best possible health status, and 100 the worst) - and their sense of self-image as 69.0. 

Across most of the 11 areas of the questionnaire – which also include ‘pain’ and ‘emotional well-being', as well as ones relating to other areas of work, life and relationships – scores remain at a similar level, or marginally worse, than in the previous survey in 1999-2000. Endometriosis UK says this is further evidence of the need for a “step change” in endometriosis care, including a pathway which integrates managing both physical and mental health. 

The report is based on the Endometriosis Health Profile-30 (EHP-30), developed by the University of Oxford with Endometriosis UK, which enables health practitioners to assess the well-being of those with endometriosis.