Mapping the Symptom Burden and Psychosocial Impact of Adenomyosis: A Scoping Review

Adenomyosis (AD) is a chronic gynaecological condition in which endometrial glands and stroma are found within the myometrium. This ectopic tissue is oestrogen-responsive and contributes to uterine enlargement, abnormal bleeding, pelvic pain, and reduced fertility. Although population estimates suggest AD affects up to one-third of women of reproductive age, the condition is frequently under-recognised. Prevalence data are skewed by reliance on hysterectomy specimens, leading to a perception that AD primarily affects older, multiparous women. In reality, emerging evidence demonstrates its occurrence across younger and even adolescent cohorts, suggesting a broader clinical spectrum than historically assumed. Despite its frequency, AD remains poorly characterised compared with other benign uterine disorders. The pathophysiology is not fully elucidated, and diagnostic pathways are hindered by the absence of universally accepted criteria. Non-invasive modalities such as transvaginal ultrasound and MRI show promise, but no imaging gold standard exists, and histopathology following hysterectomy remains the only definitive method—making diagnosis particularly challenging in reproductive-aged women. These uncertainties, combined with the clinical overlap with endometriosis, have historically obscured recognition of AD as a distinct entity. Most existing studies have concentrated on biological mechanisms and the core clinical manifestations of pain, heavy menstrual bleeding, and reproductive difficulties. In contrast, far less attention has been given to the broader psychosocial consequences of AD. While isolated studies have examined aspects such as sexual functioning, emotional wellbeing, or quality of life, findings are fragmented and often confounded by the inclusion of mixed endometriosis cohorts. Only one prior review has attempted to synthesise the patient-reported experience of AD, but its conclusions were restricted by the small evidence base and inclusion of secondary data. This lack of robust evidence is also mirrored in clinical guidance. The 2025 Australia Living Evidence Guideline: Endometriosis acknowledged symptom and pathophysiological overlap between endometriosis and AD but was unable to make any specific, evidence-based recommendations for the diagnosis or management of AD, including non-pharmacological interventions. Collectively, these gaps highlight the ongoing neglect of AD in both research and policy. The present scoping review therefore aims to address this imbalance by mapping the literature on patient-reported psychosocial impacts of AD, excluding pain and fertility outcomes. In particular, it explores how AD affects emotional health, relationships, identity, and participation in daily life, with the aim of clarifying existing knowledge, highlighting research gaps, and informing a more patient-centred approach to care.