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

Archives of Gynecology and Obstetrics https://doi.org/10.1007/s00404-025-08019-1 RESEARCH The role of self‑management in endometriosis pain: insights from a cross‑sectional survey in Germany, Austria, and Switzerland Franziska Werner1 · Victoria Jasinski1 · Renata Voltolini Velho1 · Jalid Sehouli1 · Sylvia Mechsner1 Received: 13 January 2025 / Accepted: 23 March 2025 © The Author(s) 2025 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 endometriosisrelated 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 · Self-management · Pain management · Non-pharmacological treatment What does this study add to the clinical work This study provides comprehensive overview of self-administered and therapist-assisted self-management strategies used by individuals with endometriosis, highlighting their perceived effectiveness. The findings support clinicians in providing evidence-informed, individualised recommendations for non-pharmacological pain management based on patients' preferences and resources. * Sylvia Mechsner 1 Department of Gynaecology Charité With Centre of Oncological Surgery, Endometriosis Research Centre Charité, Campus Virchow‑Klinikum, Augustenburger Platz 1, 13353 Berlin, Germany Vol.:(0123456789) Archives of Gynecology and Obstetrics Introduction It is estimated that 39.6% of women are affected by gynaecological diseases with pain as a central symptom [1]. These include endometriosis, a benign chronic inflammatory disease in which endometrial-like tissue implants and grows outside the uterine cavity, particularly in the pelvic peritoneum, ovaries, and rectovaginal septum. This condition presents a spectrum of symptoms, with dysmenorrhoea, dyspareunia, dysuria, dyschezia, and cyclical and acyclical pelvic pain being the cardinal complaints, along with bleeding disorders as well as infertility. Beyond the immediate symptoms, the burden of endometriosis encompasses the repercussions of these symptoms on various facets of women's lives. The impact of endometriosis symptoms spans daily activities, appearance, emotional well-being, financial impacts, physical activity, sex-related impacts, sleep, social engagements, and work or school commitments. Affecting 6–10% of women of reproductive age [2, 3], endometriosis is as prevalent as other chronic diseases, such as diabetes mellitus [4]. However, the average time between the onset of symptoms and diagnosis is 10.4 years, due to misdiagnosis, the normalisation of pelvic pain by healthcare professionals, and the use of hormonal contraception to suppress symptoms. The duration of diagnosis has been identified as a contributing factor to the development of endometriosis-related symptoms, comorbidities, and pain chronification [5]. In the absence of a causal therapy to date, the current first-line treatment consists of hormonal and surgical treatment, with pain being treated with non-steroidal anti-inflammatory drugs (NSAIDs) and, in severe cases, opioids. It has been demonstrated that more than 30% of patients are unable to achieve pain relief from conventional medical and surgical therapies for endometriosis [6]. Despite improving endometriosis symptoms, the challenges of hormonal contraceptives include side effects such as reduced oestrogen levels potentially leading to, and mood swings [7]. Additionally, they are not suitable for those who are trying to conceive. Furthermore, NSAIDs are associated with an increased risk of gastrointestinal bleeding, whilst metamizole has been linked to hepatotoxicity. The prescription of opioids should be closely supervised due to the risk of addiction [8, 9]. Self-management strategies, including dietary products, acupuncture, yoga/Pilates, and electrotherapy are not yet considered as therapeutic options, and their costs are not covered by health insurance due to insufficient evidence [4, 10, 11]. Although most women experiencing primary dysmenorrhoea rely on self-care techniques and lifestyle choices to alleviate menstrual symptoms [12, 13], there is limited information available about how women with endometriosis cope with their symptoms through self-management [2]. These data have the potential to support the inclusion of self-management techniques for endometriosis pain in health insurance coverage. Methods Study design The design of the online questionnaire was based on a previous Australian national study on self-management strategies amongst individuals affected by endometriosis, conducted by Armour et al. [14]. The survey was carried out online between August 1st and December 31st, 2022 in Germany, Austria, and Switzerland, with participants requiring between 15 and 40 min to complete the questionnaire. A full copy of the survey is available in the Supplementary Material 1. In this study, self-management strategies were defined as all non-pharmacological interventions used by individuals with endometriosis to alleviate symptoms. However, these strategies can be categorised into two distinct groups: (1) self-directed techniques that individuals can apply independently, including heat, cold, stretching, exercise, dietary changes, and (...truncated)