"It's like a constant black cloud": a qualitative investigation of the impact of endometriosis on quality of life

Introduction: Endometriosis is linked to adverse mental health outcomes, as well as impairments to quality of life (QoL). Although there is increasing interest in the lived experiences of individuals diagnosed with endometriosis, traditionally endometriosis has been little researched from a qualitative perspective. Research suggests that people experiencing endometriosis feel unheard due to the lack of understanding surrounding the condition, which can fuel detriments to mental wellbeing. To aid our understanding of this condition further, it is vital to convey the perspectives of those living with endometriosis.

Aim: This research aims to gain an in-depth understanding of the impact of endometriosis on the lives of individuals diagnosed with the condition.

Materials and methods: 30 individuals with an endometriosis diagnosis participated in semi-structured interviews. Interviews were designed to gain an in-depth understanding of participant experiences and perspectives in relation to endometriosis. Interviews were audio-recorded and thematic analysis was used to identify themes.

Results: Four themes were developed: life trajectory and fears for the future; emotional burden of experiencing endometriosis; sense of self; and powerlessness. Each theme uniquely and simultaneously affected QoL and wellbeing.

Conclusions and impact: Participants emphasised the adverse impact of endometriosis upon their lives. Specifically, disruptions to life trajectory had a considerable impact on an individual’s identity and contributed to the emotional burden of experiencing endometriosis. Understanding participant experiences is an important step in increasing awareness about the impact of endometriosis, giving a voice to individuals who have traditionally felt unheard. Increased understanding and awareness can lead to advancements in psychological support whilst effective and long-lasting treatments are sought.