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

Abstract

ObjectiveTo 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. DesignMixed-methods design with an online survey. SettingA survey link was posted on endometriosis support group Facebook pages. ParticipantsThe online survey was completed by 98 women living in the United States who were members of Facebook support groups. MeasurementsQuantitative 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. ResultsWomen 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. ConclusionThese 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.