Endometriosis leading to frequent emergency department visits – women’s experiences and perspectives

Abstract

Abstract Background Endometriosis is a common condition affecting 1–10% of all women. The condition is highly associated with pain. Most women with endometriosis are treated as elective outpatients, but these patients sometimes need to visit the emergency department. Aim The aim of this study was to increase knowledge about women with endometriosis repeatedly visiting the gynaecological emergency department (GED), to investigate patient experiences and expectations, and to explore unmet needs necessitating GED visits. Method Semi structured interviews were conducted with ten patients diagnosed with endometriosis who visited the GED at a tertiary university hospital four or more times within a 12-month period. Data were analysed by thematic content analysis. Result ‘Pain’ was identified as the master theme, which embodied the women’s overall experience, grouped into two main themes: ‘Living with endometriosis’ and ‘What patients need when seeking help at the GED,’ with six underlying themes. Several women described their visit to the GED as a ‘lottery,’ as they never knew what kind of treatment they would receive. Being listened to was most important for the women. Individualized care plans did not exist for most of the women in this study, although they repeatedly needed to visit the GED. Conclusion The women’s primary cause for seeking GED care was acute and unmanageable pain. A common feeling among the women was insecurity before the GED visit. To decrease this insecurity regarding assessment and treatment, a care plan for women is warranted. Our findings support the need for person-centered care and contribute to the limited research about women suffering from endometriosis and their experiences with GED.