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Endocrine Abstracts (2022) 81 EP909 | DOI: 10.1530/endoabs.81.EP909

ECE2022 Eposter Presentations Reproductive and Developmental Endocrinology (93 abstracts)

PCOS pearls - findings from the qualitative study assessing the lived experience of people with polycystic ovary syndrome

Mirna Elghobashy1, Gar Mun Lau1, Maureen Busby2, Kristine Stacke3, Pallavi Latthe4, Helena Gleeson5, Lynne Robinson6, Wiebke Arlt5, 7, Antje Lindenmeyer8, Caroline D. T Gillett7, Punith Kempegowda5, 7 & PCOS Seva Working Group7


1University of Birmingham Medical School, College of Medical and Dental Sciences, United Kingdom; 2PCOS Vitality, Belfast, United Kingdom; 3Verity – The PCOS Self Help Group, London, United Kingdom; 4Birmingham Women’s and Children’s NHS Foundation Trust, Birmingham, United Kingdom; 5Queen Elizabeth Hospital Birmingham, Department of Endocrinology, United Kingdom; 6Birmingham Women’s Hospital, United Kingdom; 7University of Birmingham, Institute of Metabolism and Systems Research, United Kingdom; 8University of Birmingham, Institute of Clinical Sciences, United Kingdom


Introduction: Existing educational resources for polycystic ovary syndrome (PCOS) have limited inclusion of patient perspectives. We invited women with PCOS to share their lived experiences to understand their perception and opinion on the current standard of care.

Methodology: Women with PCOS aged 18-60 years were invited to complete an online survey in April and May 2021. The survey had open questions focused on their lived experiences with PCOS. Participants had the option to share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from audio were transcribed verbatim. Responses were initially coded by two study members independently, using a thematic inductive method with NVivo 12. These codes were then reviewed by two senior study members to identify common themes.

Results: 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under investigation. Four participants opted to share their views as voice note recordings. Overall, five common themes emerged: experience of symptoms (504 references by 42 participants), patient journey (421 references by 42 participants), knowledge (197 references by 40 participants), peer-to-peer advice (162 references by 41 participants), and impact of PCOS on social aspects of life (42 references by 19 participants). Poor mental health was most commonly reported (83.3% of participants), followed by dermatological (81.0%) and menstrual issues (76.2%). Participants were generally dissatisfied with the care they received (88.1%). A lengthy diagnostic journey was reported in 35.7% of cases. 52.6% felt less feminine, particularly with regards to weight gain and infertility. Women with PCOS said that others with the condition should educate themselves and be proactive in their management. 46.3% reported that being more enlightened regarding their condition improved their health outcomes and enabled them to advocate for their own care.

Conclusion: PCOS has wide-ranging consequences for women living with the condition, with many feeling dissatisfied with the clinical support they currently receive. Education is important to improve their understanding of their condition and encourage a proactive approach to their own care. Therefore, we propose involving people with PCOS to co-create educational resources informed by lived experiences which will help those newly diagnosed to gain a more comprehensive and realistic understanding of the condition from fellow sufferers.

Volume 81

European Congress of Endocrinology 2022

Milan, Italy
21 May 2022 - 24 May 2022

European Society of Endocrinology 

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