Expectation–Experience Discordance Is Associated with Dissatisfaction with Hormonal Therapy in Endometriosis and Adenomyosis: The international TEPEA Study

STUDY QUESTION Do women’s expectations influence their experiences, perceptions and acceptability of medical treatments for endometriosis and adenomyosis? SUMMARY ANSWER Expectation–experience discordance appears to influence experience and satisfaction with hormonal therapies in endometriosis and adenomyosis, which are associated with greater side effects, lower reported benefit, and higher discontinuation than non-hormonal options. WHAT IS KNOWN ALREADY Endometriosis and adenomyosis are prevalent, debilitating conditions, each affecting at least 10% of women of reproductive age and hormonal therapies remain a cornerstone of management; however, they are poorly tolerated with high discontinuation rates and low satisfaction. Patients’ expectations of treatment, and sources from which these are formed, may influence their overall experience. STUDY DESIGN, SIZE, DURATION A cross-sectional questionnaire study was collaboratively developed focused on seven domains; demographics, disease experience, expectations and experiences of a comprehensive range of hormonal and non-hormonal treatments, alternative therapies, preferred characteristics of future treatments and information seeking behaviour. The questionnaire was administered and data collection began in the UK (March to May 2024), was subsequently expanded to regions across Europe and Asia (July 2024 and October 2025). In total, 4702 responses were collected from participating centres in the UK, the Netherlands, Germany, Austria, Switzerland and China. PARTICIPANTS/MATERIALS, SETTING, METHODS The anonymous, voluntary, online questionnaire targeted women self-reporting endometriosis alone, adenomyosis alone, or both, and was distributed via social media, healthcare or charity platforms. Analysis included descriptive statistics, stratification by disease type and between-group comparisons. MAIN RESULTS AND THE ROLE OF CHANCE Mean age of respondents was 35.4 years; 70.3% were White and most had at least upper-secondary education. Overall, 19.6% had undergone fertility treatment, and among those attempting conception, 42.5% reported subfertility. A total of 61.5% of participants experienced vaginal bleeding; 95.2% reported dysmenorrhoea either sometimes or always, and 88.3% reported flooding or clots. Other common symptoms included fatigue, bloating and lower back pain. Most debilitating symptoms were dysmenorrhoea, non-cyclical pain, heavy bleeding and fatigue. Respondents expected pain reduction (33.1%), reduced disease progression (19.8%), and cure (11.5%) with hormonal treatments. The leading concern was mood changes (33.1%), followed by weight gain (29.4%). During treatment, 58.7% reported mood changes and 46.4% weight gain, while 26.9% experienced pain reduction and 37.5% noted reduced or cessation of bleeding. Overall satisfaction with hormonal therapies was low, with 49.8% reporting being very or somewhat dissatisfied. Expectations for NSAIDs were higher in terms of reduced pain (68.7%), but lower for reduced disease progression (6.6%) or cure (3.2%). Concerns included stomach ulcers (34.7%), indigestion (33.2%) and no improvement (34.0%). Reduced pain was reported by 74.0% of respondents–the highest among all treatments. Satisfaction was significantly higher than with hormonal therapies (p < 0.001). Alternative treatments (Chinese and herbal medicine) were less well known. Expectations included pain reduction (32.7%), reduced disease progression (19.1%) and a cure (7.4%). While 40.9% reported no effect, 30.5% experienced reduced pain and 5.5% reported improved fertility. Satisfaction was significantly higher than hormonal medications (p < 0.001). Patients were significantly more satisfied with information sourced outside their healthcare providers than with provider-delivered education. LIMITATIONS, REASONS FOR CAUTION Patients included in the study self-reported a diagnosis of endometriosis and/or adenomyosis. Some granularity was sacrificed to prioritise brevity and ease of completion. As participation was voluntary, there is a risk of selection bias and the cross-sectional nature of the study introduces risk of recall bias and the possibility of reverse causality. WIDER IMPLICATIONS OF THE FINDINGS This is the first international study to assess acceptability of medical treatments for endometriosis and adenomyosis with European and Asian collaboration. The findings suggest these treatments are often poorly tolerated, frequently discontinued, and associated with lower satisfaction, particularly for hormonal therapies. Novel insights have improved understanding of the factors influencing patient satisfaction and treatment discontinuation. Since our findings suggest that expectations are an important determinant of treatment experience, high quality, comprehensive counselling may therefore be a valuable means of managing expectations, although this requires formal testing. Further research could explore the most effective counselling approach to optimise patient satisfaction, and similar qualitative methodologies could be used to assess surgical treatment modalities, or to compare surgery and conservative management strategies. FUNDING No funding was received for this study. DKH is supported by research grants from the VineHill Trust and a Wellbeing of Women project grant (RG2137). Open Access funding was provided by the University of Liverpool. DKHs work is supported by the National Institute for Health and Care Research, UK Applied Research Collaboration North West Coast. The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care. DISCLOSURES University of Liverpool has received honoraria for consultancy from Theramex and has received payment for presentations from Theramex and Gideon Richter for DKH's work. V.M. serves as Associate Editor for Human Reproduction and reports receiving travel and speaker’s fees from Guerbet, and research grants from Guerbet, Merck, Theramex, Boston Scientific and Ferring outside the scope of this work. The remaining authors declare no conflicts of interest for this article and there are no commercial or corporate interests relevant to this study. TRIAL REGISTRATION NUMBER N/A