Understanding the Psychosocial Impact of Adenomyosis: A Scoping Review and National Survey

To map existing literature on the psychosocial and symptom experiences of women diagnosed with adenomyosis (AD), and to inform a study exploring these impacts within an Australian national context. A scoping review was conducted in accordance with the PRISMA-ScR framework. Five databases (MEDLINE, CINAHL, PsycINFO, Scopus, and EMCARE) were systematically searched without date restrictions. The protocol was registered with the Open Science Framework https://doi.org/10.17605/OSF.IO/W8UJN). Eligible studies included primary qualitative, quantitative, or mixed-methods research examining psychosocial or symptom experiences among women diagnosed with AD. Following the review, a national cross-sectional online survey of Australian women with AD was undertaken to further investigate psychosocial outcomes. Sixteen studies met inclusion criteria, representing diverse geographic and methodological contexts. Psychosocial impacts were consistently reported across four domains: physical health, psychological well-being, sexual and intimate relationships, and daily functioning and quality of life (QoL), with substantial adverse effects across all domains. The survey was adapted from the Endometriosis Impact Questionnaire (EIQ) and included demographic items plus 48 questions across physical, social, psychological, education, and intimate relationship domains. Over six months, 1,116 responses were collected, with 903 retained for analysis following predefined criteria. Preliminary findings indicated that psychological and social domains represented the highest perceived burden. Women with coexisting gynaecological conditions reported significantly greater psychosocial impact compared with those with AD alone, and longer diagnostic delay was associated with increased burden. The survey demonstrated excellent internal consistency across domains (Cronbach’s α = 0.807–0.928), supporting the reliability of the adapted multidimensional impact measure. Adenomyosis is associated with substantial psychosocial burden extending beyond physical symptoms. These findings highlight the need for holistic, patient-centred models of care that address psychological, relational, and functional impacts alongside clinical management. Ethical Compliance: Ethics approval for the national survey was obtained from James Cook University HREC (25H-0015).

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ASPOG 50th Annual Scientific Meeting: Lifelong Needs, Complex Realities

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