Living with painful endometriosis - A struggle for coherence. A qualitative study

A Hållstam, Andrea Hållstam, Hållstam A, BM. Stålnacke, Stålnacke BM, B M Stålnacke, Svensén C, Christer Svensén, C Svensén, Löfgren M, M Löfgren, Monika Löfgren
Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives · 2018 · vol. 17 , pp. 97–102 · doi:10.1016/j.srhc.2018.06.002 · PMID:30193728 · W2809049346
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This qualitative study explored the lived experiences of individuals with painful endometriosis, focusing on their struggle to maintain a coherent sense of self amidst chronic pain.

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Abstract

OBJECTIVES: The study sought to examine women's experience of painful endometriosis including long-term aspects, social consequences, impact of treatment and development of own coping strategies. STUDY DESIGN: This qualitative study was based on 16 individual interviews analyzed according to grounded theory. The thirteen women (age 24-48) were recruited at a pain clinic in Stockholm, Sweden. RESULTS: A theory illustrating women's experience of living with painful endometriosis was developed with three categories and one core category. Bidirectional interactions between the categories and with the core category were found. Endometriosis influenced the women's sensations, feelings and reactions, creating a sense of difference from other women (category: Woman with painful endometriosis). The condition led to either helpful or harmful encounters with health care and significant others (category: Dependence). It also had overall physical, social and existential consequences (category: A ruined life). To cope, the women had to struggle for coherence by searching for understanding, coping and meaning (core category: Living with painful endometriosis). CONCLUSIONS: Living with severe painful endometriosis signified a struggle for coherence. The women needed to deal with feelings of difference, dependence and a ruined life and thus struggled for understanding, coping and meaning. Health-care providers should promote the struggle for coherence by explaining the feeling of difference, minimizing dependence and supporting the process of disease-related grief.

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Condition tags

endometriosis

MeSH descriptors

Adaptation, Psychological Adaptation, Psychological Emotions Emotions Endometriosis Interpersonal Relations Interpersonal Relations Pain Quality of Life Quality of Life Sense of Coherence Sense of Coherence Adult Adult Attitude to Health Attitude to Health Endometriosis Endometriosis Endometriosis Female

Citation neighborhood (2-hop)

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (27)

Cited by (45)

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