Karavadra, B., Semlyen, J., Morris, E., & Thorpe, G. (2025). 'I don't know what normal has been': a grounded theory exploration of the journey to endometriosis diagnosis. BMC women's health. https://doi.org/10.1186/s12905-025-03869-y
Karavadra B, Semlyen J, Morris E, Thorpe G. 'I don't know what normal has been': a grounded theory exploration of the journey to endometriosis diagnosis. BMC women's health. 2025. doi:10.1186/s12905-025-03869-y
Karavadra, Babu, et al. "'I don't know what normal has been': a grounded theory exploration of the journey to endometriosis diagnosis." BMC women's health, 2025.
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Dismissed period pain slows endometriosis diagnosis, women report
Fifteen women with endometriosis linked normalized period pain to a delayed diagnosis. In this interview study at an English hospital, every woman had a tissue-confirmed diagnosis. Their accounts showed four mindsets they moved between. Diagnosis was most likely where a clinician made them feel believed.
Key Findings
Fifteen women with a tissue-confirmed diagnosis took part in one-on-one interviews at an NHS teaching hospital trust in the UK, held March 2018 to September 2018, each lasting 30 to 120 min.
The authors describe four contexts that women's routes to diagnosis may pass through: refusal, two levels of disbelief, and belief. Each woman moved back and forth among them.
Where family or a school nurse called symptoms normal, women showed no overt help seeking. The authors say diagnosis is almost impossible in that refusal context, unless identified incidentally.
Some women in weak disbelief pushed back on doctors or brought a symptom diary. Dismissal could return a woman to strong disbelief, and one participant stayed away from doctors for years.
Women who felt believed by a clinician described more power and trust. The authors report diagnosis is most likely in belief, with remaining delay more likely structural, such as NHS waiting times.
Interpretation
The study used constructivist grounded theory, a qualitative design that builds a theory from interview accounts. Fifteen women took part, mostly Caucasian, all English-speaking, all recruited in the East of England. Every participant already held a diagnosis, so women still waiting for one are absent. The interviewer was a gynecology registrar, and interviews took place in a hospital. The study does not measure how much of each woman's delay came from each context. The authors write that social delay appears to weigh as much as procedural delay, if not more.
RRM Context
Restorative reproductive medicine treats persistent period pain as a reason to look for a cause. One participant said doctors often treat symptoms while the actual cause goes uninvestigated, and that starting the pill was insufficient. Suppressive medications can quiet symptoms while disease progression continues undiagnosed. Body literacy means reading one's own cycle. It gives a woman records to weigh against what others call normal, as a symptom diary did for one participant.
Our editorial summary of this paper, not the article's abstract.
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.
Endometriosis › Diagnosis › Diagnostic Delay · General Gynecology › Pelvic Pain › Chronic Pelvic Pain · Mental Health and Psychosocial Care › Psychosocial Support › Counseling and Therapy
Babu Karavadra, Joanna Semlyen, Edward Morris, Gabrielle Thorpe
B Karavadra, J Semlyen, Ed Morris, Ted Morris, E Morris, G Thorpe
PMID 40616073 40616073 DOI 10.1186/s12905-025-03869-y 10.1186/s12905-025-03869-y Karavadra et al. 2025, Karavadra 2025
