“I just want to stay here and sleep forever”: South African patients’ lived experiences of chronic fatigue in endometriosis

Abstract

Chronic fatigue is a distressing symptom for endometriosis patients but is not widely investigated in the literature. Our aim was to explore patients’ lived experiences of chronic fatigue and how they make meaning of it. We analysed a subset of data from seven severely fatigued endometriosis patients, drawn from a broader qualitative study in South Africa, using an interpretive phenomenological analysis. Three superordinate themes and eight subordinate themes were developed. The three superordinate themes were powerlessness, which was a core aspect of the chronic fatigue experience among participants; struggle and anguish, as their lives had become a daily struggle resulting in feelings of despair and anger; and otherness, as they felt different from their peers due to the fatigue. The findings demonstrate the far-reaching effects that chronic fatigue has in the lives of endometriosis patients, including on their self-perception, and highlights the critical need for fatigue management strategies within treatment protocols.