Strategies for self-management of endometriosis symptoms: An observational study

• Endometriosis is a chronic and multifactorial disease without cure and the treatments to manage symptoms are moderately effective. • Self-management strategies are used to improve quality of life. • Most self-management strategies are perceived as more effective compared to the prescribed pharmacological treatment to manage chronic pelvic pain. • Self-management strategies are judged to have lower side effects compared to prescribed medications. Endometriosis affects 10–15% of women of childbearing age, impacting their quality of life. Treatment options are limited, mainly relying on hormonal treatment and surgery. Symptoms are often incapacitating, but typical analgesics provide limited relief. Thus, many patients use self-management strategies such as dietary changes, lifestyle modifications, alternative medicine and non-medical pharmacological approaches. Understanding their use, effectiveness and tolerance in patients living with endometriosis could improve overall management. A survey was distributed to women treated at the Endometriosis Centre of the University Hospitals of Geneva and on social media platforms from March 2020 to March 2024. Participants were only included if they had a confirmed diagnosis of endometriosis and completed questionnaires on their self-management strategies in the previous six months, along with their effectiveness and tolerance. Data from 146 valid survey responses were analysed. Self-management strategies were used by 95% of the participants. The most reported strategies included applying heat, rest and dietary changes. Participants perceived several strategies as more effective than treatments prescribed by healthcare providers (analgesics and hormones). Applying heat, dietary changes and osteopathy were perceived as the most effective, leading also to lower use of analgesics. For many strategies, even those with lower perceived effectiveness, more than 90% of participants using them would recommend them to friends and family. Our study found that patients with endometriosis broadly rely on self-management strategies. Further assessment and integration of these strategies could improve management of endometriosis within the biopsychosocial model of chronic pain, emphasizing patient empowerment.