Pathway to Endometriosis Diagnosis in South Australia: A Qualitative Study

Shea G, Gabrielle Shea, Renée Bowman, Bowman R, Shipman J, Jessica Shipman, Rebecca O’Hara, Rebecca O'Hara, Christine Barry
The Australian & New Zealand journal of obstetrics & gynaecology · 2025 · vol. 66(1) , pp. e70068 · doi:10.1111/ajo.70068 · PMID:41217095 · W4416125767
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This qualitative study explored endometriosis patient experiences in South Australia, identifying personal and systemic barriers like symptom normalization, stigma, and healthcare provider dismissal that delay diagnosis.

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This qualitative study explored the lived experiences of fifty individuals in South Australia with surgically confirmed endometriosis to identify barriers to timely diagnosis. Participants reported significant delays between symptom onset and diagnosis, attributing these gaps to personal normalization of menstrual pain and systemic issues such as healthcare provider dismissal and insufficient education. The authors emphasize that these hurdles hinder equitable access to care and call for multi-faceted improvements in technology, advocacy, and practitioner training to foster a more patient-centered approach. This paper is centrally about endometriosis — specifically examining the diagnostic pathway and barriers faced by patients in South Australia.

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Abstract

BACKGROUND: Endometriosis is a significant and prevalent health issue. Delayed diagnosis is common and the associated delay to treatment is associated with high socioeconomic and personal costs including chronic pain, infertility and reduced quality of life. There is a lack of studies documenting endometriosis pathways in Australia. AIMS: To explore lived experiences of individuals with endometriosis in South Australia and identify perceived barriers to timely diagnosis. MATERIALS AND METHODS: Semi-structured interviews were conducted with 50 participants aged over 18 years living in South Australia with a surgical diagnosis of endometriosis and data was analysed using reflexive thematic analysis. RESULTS: Participants reported significant delays between the onset of symptoms and their diagnosis. Barriers were identified at personal and systemic levels. Personal barriers include societal and self-normalisation of symptoms and stigma associated with discussing menstrual health. Systemic hurdles include symptom dismissal and insufficient endometriosis education within healthcare and community settings. These barriers significantly hinder equitable and empathetic healthcare access. Diagnosis delivery is a key point in the endometriosis care pathway and must be conducted thoroughly and empathetically by health professionals with a patient-centred focus. CONCLUSIONS: This study highlights the need to improve care pathways for the timely recognition and management of persistent pelvic pain. In patients presenting with chronic pelvic pain, endometriosis should be considered as part of the differential diagnosis. Results call for multi-faceted improvements in technology, advocacy, and education for students and health practitioners to improve timely diagnosis and patient-centred outcomes. We suggest re-orientating the healthcare system to centre the individual as the expert in their own journey, fostering a more patient-centred approach.
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Abstract

Background Endometriosis is a significant and prevalent health issue. Delayed diagnosis is common and the associated delay to treatment is associated with high socioeconomic and personal costs including chronic pain, infertility and reduced quality of life. There is a lack of studies documenting endometriosis pathways in Australia. Aims To explore lived experiences of individuals with endometriosis in South Australia and identify perceived barriers to timely diagnosis.

Materials and methods

Semi-structured interviews were conducted with 50 participants aged over 18 years living in South Australia with a surgical diagnosis of endometriosis and data was analysed using reflexive thematic analysis.

Results

Participants reported significant delays between the onset of symptoms and their diagnosis. Barriers were identified at personal and systemic levels. Personal barriers include societal and self-normalisation of symptoms and stigma associated with discussing menstrual health. Systemic hurdles include symptom dismissal and insufficient endometriosis education within healthcare and community settings. These barriers significantly hinder equitable and empathetic healthcare access. Diagnosis delivery is a key point in the endometriosis care pathway and must be conducted thoroughly and empathetically by health professionals with a patient-centred focus.

Conclusions

This study highlights the need to improve care pathways for the timely recognition and management of persistent pelvic pain. In patients presenting with chronic pelvic pain, endometriosis should be considered as part of the differential diagnosis. Results call for multi-faceted improvements in technology, advocacy, and education for students and health practitioners to improve timely diagnosis and patient-centred outcomes. We suggest re-orientating the healthcare system to centre the individual as the expert in their own journey, fostering a more patient-centred approach. Conflicts of Interest The authors declare no conflicts of interest. Data Availability Statement The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Condition tags

endometriosischronic_pelvic_paininfertility

MeSH descriptors

Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis Delayed Diagnosis

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (21)

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