Women's Use of Self-Care Interventions for Endometriosis Pain in the United States.

Abstract

OBJECTIVE: To identify self-care interventions women living in the United States are using to manage endometriosis-related pain, describe frequency of use, and determine perceived effectiveness. DESIGN: Mixed-methods design with an online survey. SETTING: A survey link was posted on endometriosis support group Facebook pages. PARTICIPANTS: The online survey was completed by 98 women living in the United States who were members of Facebook support groups. MEASUREMENTS: Quantitative measures included demographic and health-related characteristics; self-care intervention frequency of use and perceived effectiveness; knowledge, confidence, and support managing endometriosis symptoms; pain intensity; and quality of life (QOL) operationalized with the Endometriosis Health Profile-30. Descriptive statistics and correlation coefficients were used to analyze data. Qualitative perspectives were captured through open-ended questions and analyzed for themes. RESULTS: Women used an average of 5.8 self-care interventions more than once per week. Heat, rest, over-the-counter pain medications, and diet changes were perceived as most effective, with >75% reporting at least slight improvement. Frequent use of multiple strategies was significantly correlated with worse scores for pain-related QOL (p < .01), all other QOL dimensions (p < .01), and less confidence in one's ability to control symptoms (p < .05). Endometriosis pain management perspectives showed three themes: Daily Struggle With Mental and Physical Health, Lack of Knowledge and Understanding From Health Care Providers, and Lack of Understanding From Everybody Else. CONCLUSION: These results strengthen evidence for the effectiveness of heat, rest, and dietary changes for endometriosis-related pain and underscore an individual's desire for support and understanding from health care professionals, family, and friends. Nurses can provide evidence-based self-care intervention teaching to help mitigate endometriosis-related pain, prevent adverse effects, and assist individuals in discovering what works for them. It is imperative that nurses deliver and advocate for well-informed, empathetic, and supportive care from all health care professionals.