Experience of endometriosis pain: a qualitative study

Endometriosis is a common disorder in postpubertal women and often associated with pain in the pelvis and elsewhere. Pain and related symptoms, such as fatigue, adversely affect quality of life. Surgical and hormonal treatments have limited efficacy and can cause additional problems. There are surprisingly few studies of psychologically based interventions aimed at pain management and a better quality of life, although women with endometriosis are included within mixed chronic pain populations. As studies of pain management applied to endometriosis start to emerge, it is important to ascertain whether the assumptions of the dominant psychological model of pain, fear, and avoidance (developed mainly in musculoskeletal pain) are appropriate for the population and the problems associated with pain. We conducted a qualitative study of 16 women with endometriosis, using a very open interview technique (Grid Elaboration Method) and thematic analysis of women's accounts. We elicited 6 interrelated themes: 1 on the nature of pain; 3 on impact on everyday life, social life, and relationships, and emotions; 1 on healthcare experiences; and 1 on the burden of being female. Even when describing concerns about what was causing pain, women expressed few fears about physical integrity, nor did they avoid activities with the intention of protecting themselves from damage or increased pain. This leads us to question the applicability of the fear and avoidance model, and we encourage further exploration of the psychology of endometriosis-related pain to better design effective pain management interventions.