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Paper short abstract

The paper explores how symptom-based endometriosis diagnosis affects the recognition and dismissal of symptoms and the demarcation of illness boundaries. Drawing on interview and ethnographic data from Finland, we trace how symptom-based diagnosis engenders contestation around uncommon symptoms.

Paper long abstract

In recent years, the practices of diagnosing endometriosis have diversified from diagnostic surgery towards symptom-based diagnosis. We examine the effects of this shift on how symptoms are recognized or dismissed and how illness boundaries are demarcated. While endometriosis is defined in clinical literature as the presence of tissue resembling the uterine lining outside the uterus, its symptoms vary widely from menstrual pain to pain during exercise and sex, gastrointestinal issues and pain affecting body parts unrelated to reproduction. In situations where imaging tests cannot verify endometriosis, clinicians and patients are faced with the task of making sense of situated, idiosyncratic and evolving symptoms. Symptom-based diagnosis makes diagnosis less invasive and centers patients’ experiences of illness. However, we argue, it also engenders contestation over what constitutes diagnostically significant symptoms. Although appearing to depart from the standard-driven framework of evidence-based medicine, symptom-based diagnosis nevertheless prioritizes symptoms understood to be typical of endometriosis in biomedical literature and renders less common symptoms contested. Drawing on interview and ethnographic data from Finland, we trace how the possibility of endometriosis is enacted and experienced in clinical encounters. While clinicians see symptom-based diagnosis as a pragmatic approach that often accurately predicts the presence of endometriosis, symptom-based diagnosis may leave patients with uncertainty, even in cases where endometriosis is considered probable. Furthermore, the challenges of diagnosing endometriosis in adolescents highlight the implications of symptom-based diagnosis for care trajectories. We show how the changing basis of endometriosis diagnosis affects what endometriosis is understood to be as a disease.