‘I don’t know what normal has been’: A Grounded Theory exploration of the journey to endometriosis diagnosis

Karavadra, Babu, Semlyen, Joanna, Morris, Edward and Thorpe, Gabrielle (2025) ‘I don’t know what normal has been’: A Grounded Theory exploration of the journey to endometriosis diagnosis. BMC Women's Health, 25. ISSN 1472-6874

Preview

PDF (Karavadra_etal_2025_BMCWomensHealth) - Published Version Available under License Creative Commons Attribution. Download (1MB) | Preview

Abstract

Background: Diagnosis of endometriosis in the United Kingdom takes on average eight years, with delay to diagnosis contributing to physical, psychological and social burden for women experiencing endometriosis. This study aimed to explore experiences of diagnosis in women with confirmed endometriosis. Methods: The study was informed by Constructivist Grounded Theory. Purposeful sampling was used to recruit fifteen women with confirmed endometriosis to participate in semi-structured interviews. Delay to diagnosis was identified as a key finding after analysis of four interviews and was therefore a focus for subsequent theoretical sampling. Constant comparative analysis generated codes and categories and ultimately a draft theory. Results: A novel theoretical framework was developed, illustrating how participants fluctuated through four contexts of refusal, strong disbelief, weak disbelief and belief in their diagnosis journey, underpinned by a core category of ‘making sense of a fluctuating life’. Within each context, the framework explicates how relational power and self-perception engenders a strong psychosocial influence on recognition of risk of harm from symptoms of endometriosis and consequent investigating behaviour. Conclusions: The journey to diagnosis of endometriosis involves a complex interplay of psychological, social and relational factors in driving or inhibiting help-seeking behaviour, requiring sensitivity, understanding and a commitment to listen and value women’s experiences within the clinical consultation to ensure timely and appropriate investigation and management.

Item Type:	Article
Additional Information:	Availability of data and materials: The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Funding information: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Groups > Epidemiology and Public Health Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User:	LivePure Connector
Date Deposited:	30 Jun 2025 09:30
Last Modified:	17 Jul 2025 19:33
URI:	https://ueaeprints.uea.ac.uk/id/eprint/99761
DOI:	10.1186/s12905-025-03869-y

Downloads

Actions (login required)

View Item