Yearning for movement. A qualitative interview study exploring physical activity in the context of endometriosis-associated chronic pain.

Abstract

BackgroundChronic pain is a common symptom of endometriosis with significant negative impact on physical and social activities. Patients perceive that healthcare professionals lack knowledge about the condition, and that available treatment options provide insufficient pain relief. Physical activity is recommended for endometriosis-associated pain in Swedish guidelines. However, little is known about how patients perceive and engage in physical activity in daily life.ObjectivesTo explore physical activity, self-management strategies and healthcare experiences in individuals with endometriosis-associated chronic pain.DesignA qualitative descriptive design.MethodsWe conducted semi-structured individual interviews with 15 participants between December 2021 and September 2022. The interviews were audio-recorded, transcribed verbatim and analysed using qualitative content analysis.ResultsThe overarching theme identified from the analysis, "Yearning for movement", captures both the strong desire to be physically active and the challenges of doing so while living with endometriosis-associated chronic pain. Three categories illuminate the various paths participants took in their efforts to manage physical activity. "Monitoring and assessing" describes participants' continuous monitoring of their pain and energy levels and assessment of their ability to participate in social or physical activities. "Seeking healthcare" describes the participants' needs for greater support and understanding from healthcare professionals. "Adapting and trying to take action" describes the actions the participants took to manage physical activity in daily living.ConclusionIndividuals living with endometriosis-associated chronic pain experience considerable limitations on physical functioning and a continuous time-consuming and laborious monitoring of pain and energy levels. Participants wished for increased knowledge about chronic pain and greater support for physical activity. These results call for improved support from healthcare for individuals suffering from endometriosis-associated chronic pain for both physical activity as well as pain-education.