STUDY QUESTION What do women with endometriosis recall being told about their fertility by their healthcare providers?
SUMMARY ANSWER Women recalled being given varied information and advice, and gave examples of empathic and individualized care from doctors but also reported opportunities for enhancing clinical practice.
WHAT IS KNOWN ALREADY There is evidence of an association between endometriosis and infertility. However, the strength of this association and the mechanisms that underlie it are not yet known nor are the implications for optimum healthcare.
STUDY DESIGN, SIZE, DURATION This study used in-depth cross-sectional qualitative research methods.
PARTICIPANTS/MATERIALS, SETTING, METHODS Women aged at least 18 years who lived in Victoria, Australia, and who had been surgically diagnosed with endometriosis were invited to participate in in-depth interviews about their experience of endometriosis. Twenty-six women of diverse backgrounds and experiences of endometriosis were interviewed from January to September 2014. Interviews were transcribed and analysed thematically using a data-driven approach.
MAIN RESULTS AND THE ROLE OF CHANCE All women encountered medical professionals who were aware of the association between endometriosis and infertility, and who were proactive in ensuring fertility was addressed within endometriosis care. Women recalled being given varied, often conflicting, information about the consequences for their fertility of an endometriosis diagnosis. While some recounted positive experiences with the way their doctor communicated with them about endometriosis and fertility, all women reported adverse experiences such as receiving insufficient or inappropriate information or having their doctor prioritize their fertility over other aspects of their care, including quality of life and symptom relief, without first consulting them.
LIMITATIONS, REASONS FOR CAUTION The perspectives of the women's doctors were not sought. The findings may not translate to settings that differ from a predominantly Anglo-Saxon country with both universal public and private healthcare systems.
WIDER IMPLICATIONS OF THE FINDINGS Women's fertility needs and priorities differ for many reasons; there can be no ‘one size fits all’ approach to care. Women may benefit most from endometriosis care in which they are first asked about their fertility needs and preferences and in which medical uncertainty is acknowledged.
STUDY FUNDING/COMPETING INTEREST(S) K.Y. receives a scholarship from the National Health and Medical Research Council and Australian Rotary Health. J.F. is supported by a Monash Professional Fellowship and the Jean Hailes Professional Fellowship which is funded by Perpetual Trustees Pty Ltd. The authors have no conflicts of interest to declare.