Exploring women's experiences of informational support provided by gynaecologists in endometriosis care: a qualitative study.

BACKGROUND

Endometriosis affects approximately one in seven women in Australia and is associated with substantial physical, psychological and social impacts. Informational support is critical for enabling informed decision-making and fostering women's agency in care. While healthcare providers play a central role in delivering such information, existing research has predominantly focused on General Practitioners, despite the pivotal role of gynaecologists in endometriosis management.

OBJECTIVES

This study aimed to explore Australian women's experiences of endometriosis informational support from gynaecologists.

DESIGN/

SETTING

A descriptive qualitative study was conducted using semi-structured online interviews.

PARTICIPANTS

16 women over 18 years old living in Australia with suspected or confirmed endometriosis.

RESULTS

Three main themes were generated: Finding a gynaecologist who felt right: navigating a complex care pathway; Variance in informational support before diagnostic surgery and the uncertainty of recovery time; and Understanding what comes next: informational support and its gaps after diagnosis. The women emphasised the importance of finding not just any gynaecologist, but one with specific expertise in endometriosis. Factors such as geographical location, health insurance and referral pathways shaped this process. Once laparoscopic surgery was scheduled, informational support became particularly important in preparing women for the procedure, with surgical techniques and recovery expectations identified as key areas of informational need. Following diagnosis, the women highlighted the importance of clear communication regarding the nature of endometriosis, available treatment options and fertility considerations.

CONCLUSION

Informational support was found to be essential across all stages of the diagnostic and post-diagnostic journey. However, the women identified ongoing gaps, suggesting that the provision of information by gynaecologists could be further strengthened to better meet women's needs.