"It's like a constant black cloud": a qualitative investigation of quality of life and illness perceptions in endometriosis

Research output: Contribution to conferenceAbstractpeer-review


Objectives: Several factors are linked to quality of life (QoL) detriments in individuals living with endometriosis, including pain and sub-fertility. Research has yet to draw upon the perspectives of individuals with endometriosis to explore the role of illness-related perceptions (IPs) in QoL. This paper aims to provide an in-depth, qualitative account of the lived experiences of individuals with endometriosis, specifically focusing on IPs and QoL.

Design: A qualitative study using an exploratory research design. Semi-structured, in-depth interviews were conducted.

Method: 30 individuals with a diagnosis of endometriosis participated in online interviews. Interviews were audio-recorded and transcriptions were managed with NVivo. A thematic analysis approach was taken, first categorising responses in line with pre-defined IP dimensions before additional themes were identified out-with a theoretical framework.

Preliminary results: Themes identified include: 1) feeling disbelieved and diagnostic delay; 2) powerlessness relating to symptoms and treatment; 3) fears for future; 4) impact on sense of self; 5) community and shared experience.

Current stage of work: Analysis is ongoing and is expected to be completed by May 2022.

Conclusions: Participants largely emphasised the adverse impact of endometriosis upon their lives, drawing upon a diverse and wide range of factors contributing to decreased QoL. IPs appear to be dynamic and changeable in relation to endometriosis and are influenced by experiences both within and out-with medical settings. The value of incorporating psychological interventions into the care of those living with endometriosis and the importance of gaining a sense of community and sharing experiences with others is emphasised.


  • endometriosis
  • illness perception
  • qualitative


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