The double-edged experience of healthcare encounters among women with endometriosis: A qualitative study

To identify and describe the experience of healthcare encounters among women with endometriosis.

Endometriosis is a "hidden" chronic gynaecological disease appearing in every 10th woman of fertile age. Different manifestations of pain are the main symptoms, often leading to impaired physical and mental health, and lower quality of life. Previous research on healthcare experiences among women with endometriosis has focused on diagnostic delay and experiences of encountering general practitioners.

A qualitative, interpretive, phenomenological approach was used.

We interviewed nine women aged 23-55, with a laparoscopy-confirmed diagnosis of endometriosis. The interviews were recorded and transcribed verbatim. The data were analysed following the steps of the interpretive phenomenological approach.

Two themes were identified in the interview transcripts: being treated with ignorance and being acknowledged. The essence: "the double-edged experience of healthcare encounters" emerged from the themes. The women's experience was double-edged as it involved contradictory feelings: the encounters were experienced as both destructive or constructive. On the one hand, the destructive side was characterised by ignorance, exposure and disbelief. On the other hand, the constructive side made the women feel acknowledged and confirmed, boosting their self-esteem.

The new and important aspects of the findings are that the experience of healthcare encounters is for the first time expressed as double-edged: both destructive and constructive. The experience was of specific importance as it affected the women's perceptions of themselves and of their bodies.

The information about the constructive side of the experience is of clinical valuable for all healthcare professionals (nurses, midwives and doctors) encountering these women, as it provides a new level of understanding of the experiences. The findings demonstrate both psychological and practical aspects that can help professionals to improve the encounters.