A Descriptive Case Study of Living with Uterine Adenomyosis and Achieving a Diagnosis in 21st Century Scotland and England

Abstract

Background: Women in Scotland and England are being neglected, and they do not receive the healthcare support they need. Uterine adenomyosis (UA) is a common disease of the uterus, often with a debilitating impact on women’s physical, social and mental health. Despite this, diagnosis is often missed or delayed in the clinical settings.

Aim: This research appears to be the first of its kind to describe how women currently living with UA, experience diagnosis in Scotland and England.

Methods: Using case study research methodology, women diagnosed with UA were purposefully recruited and interviewed about their lived experience. Additionally, documentary analysis was employed to explore policy and guidelines that direct service provision, to determine the extent to which they are used to benefit women and their diagnostic journey.

Findings: The data analysis highlights the frustrations faced by women with UA, due to indifferent and unsympathetic reactions from society, and medical misogyny. It reveals a general lack of knowledge and awareness, perpetuating the widespread and deep-rooted cultural normalisation of menstrual symptoms and the perception that women’s complaints are exaggerated, which marginalises them. Women value a diagnosis which brings psychological relief, fosters constructive dialogue, and empowers choice, but the diagnostic process is often delayed. Findings suggest that ultrasound (US) imaging can yield inconsistent results, or positive results fail to initiate progress. While government efforts to raise awareness now exist and are welcome, there remains a lack of interprofessional collaboration and agreed direction, as well as limited understanding of the lived experience and impact that UA has on women.

Conclusion: The findings intimate an ongoing need for improved awareness of this condition, and for better interprofessional education and collaboration. This may drive the creation of specific UA management guidelines to reduce the contemporary diagnostic confusion. Addressing these issues is critical to foster a more supportive healthcare environment, to build and improve current pathways for more timely diagnoses and attend to the contemporary systemic neglect of women with UA, in Scotland and England.

Research limitations are acknowledged, and future recommendations include the need to better understand the barriers to diagnosis from the different healthcare professional perspectives, as well as how best to raise awareness about UA in society.

Date of Award	2025
Original language	English
Awarding Institution	University of Dundee
Supervisor	Tim Croudace (Supervisor), Fiona Muir (Supervisor) & Margot McBride (Supervisor)