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

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.