The role of self-management in endometriosis pain: insights from a cross-sectional survey in Germany, Austria, and Switzerland

Abstract

Background: Endometriosis has a significant negative impact on women's lives. Unfortunately, current medical treatments often fail to provide adequate pain relief and may cause intolerable side effects. Although many women experiencing primary dysmenorrhoea employ self-management strategies to help alleviate period-related symptoms, there is a paucity of knowledge about how women with endometriosis manage their symptoms through self-management.

Methods: A cross-sectional online survey was distributed in Germany, Austria, and Switzerland, between August and December 2022, targeting women aged 18 years or older with a diagnosis of endometriosis. The survey gathered information on (pharmacological and non-pharmacological) self-management strategies employed by the respondents in the previous six months, including their frequency, reasons for non-use, self-rated effectiveness, and impact on reducing endometriosis-related medication. Furthermore, the survey collected data on demographics, medical history, current symptomatology, and medication usage. Descriptive statistical analyses were conducted.

Results: Of the 912 valid responses, 75.4% reported using self-management strategies, with the most prevalent being rest (91.6%), heat (91.1%), and exercise (63.3%). The most highly rated techniques in terms of effectiveness in pain reduction were cannabis, osteopathy, heat, and alcohol, with mean effectiveness ratings of 8.0, 7.3, 7.1, and 6.8, respectively, on the Numerical Rating Scale. Interventions, such as Tai Chi/Qi Gong, yoga/Pilates, herbal medicine, stretching, and meditation/breathing, were rated as being less effective. The lack of information and costs were identified as the primary reasons for not utilising self-management approaches.

Conclusion: The findings of this study may provide evidence for the reimbursement of self-management techniques by health insurance companies for the treatment of endometriosis-associated pain.

Keywords: Endometriosis; Non-pharmacological treatment; Pain management; Self-management.

Fig. 1

Analgesic usage and effect of self-management on medication reduction. A Use of analgesics against endometriosis-associated pain (N = 912). B Reduction of endometriosis-related medication under usage of self-management methods