Navigating the interface between ‘normal’ and ‘medical’ in adolescent dysmenorrhoea in general practice: why research and terminology discrepancies matter.

Problem

Dysmenorrhoea affects up to 94% of adolescents who menstruate, with a third reporting severe pain, and has adverse impacts on education, social, and work activities. Treatments are available, but, despite the prevalence and significant impacts, no more than a third of young women access healthcare for menstrual pain. Dysmenorrhoea is typically characterised into primary (no known underlying pelvic pathology) or secondary (in association with pelvic pathology). Although previously considered rare, the commonest cause of secondary dysmenorrhoea in adolescence is endometriosis. Distinguishing between primary and secondary dysmenorrhoea in adolescence is a pivotal clinical and academic challenge, and an area of care where GPs would like better evidence and resources. Delays in diagnosis of the most common cause of secondary dysmenorrhoea (endometriosis) highlight the complexity of this task.

Approach

We undertook a narrative mixed-methods synthesis exploring what is known about adolescent dysmenorrhoea in community health settings (PROSPERO CRD42021256458), including 323 full text papers. One review aim was to develop guidance to help clinicians navigate between symptoms and possible diagnoses in adolescents presenting to general practice with menstrual pain. Towards this aim, we have identified and collated how primary and secondary dysmenorrhoea are characterised in studies reporting evidence about primary dysmenorrhoea and present this using the lens of the sociology of diagnosis.

Findings

There are marked inconsistencies in how primary dysmenorrhoea is operationalised within inclusion criteria for research, ranging from (singly or in combination); self-report, exclusion of ‘known’ conditions, examination, exclusion of those on hormonal contraception, or having an ultrasound scan. None of these will reliably exclude all cases of adolescent endometriosis. We identify discrepancies of language including whether primary dysmenorrhoea is positioned as medical/organic or functional. We also identify discrepancies in the relationships between onset of pain after menarche and the proposed likelihood of pathology (secondary dysmenorrhoea), discrepancies in the relationship between regular/ovulatory cycles and pain, and inconsistencies in both descriptions of causality for primary dysmenorrhoea, and response to treatment.

Consequences

The inconsistencies in defining primary dysmenorrhoea suggest that most studies are reporting undifferentiated dysmenorrhoea, as a symptom, rather than primary dysmenorrhoea, which is arguably a ‘diagnosis’ with an understood etiology (no underlying structural cause). We argue that conflating symptoms with diagnosis risks constraining clinical reasoning and may contribute to delays in diagnosis. Delays in diagnosis of endometriosis are testament to the complexity of differentiating primary from secondary dysmenorrhoea: it might be better to call dysmenorrhoea just that, treating and validating all dysmenorrhoea, while keeping our doors and minds open.