The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study

Abstract

There appears to be a divergence between women's experience and attitudes of healthcare professionals. The diagnosis, support and lived experience of women with polycystic ovary syndrome could be enhanced by better professional recognition of these concerns, improved knowledge and communication about polycystic ovary syndrome and better access to support and specialist advice.

The Needs of Women and Healthcare Providers regarding Polycystic Ovary Syndrome Information, Resources, and Education: A Systematic Search and Narrative Review

“…Receiving a PCOS diagnosis is important to women. A diagnosis demonstrates that their concerns have been recognized and taken seriously 7,8 and provides an explanation for their symptoms. 9 Receiving a diagnosis also represents opportunities to take action 9 and receive comprehensive care for the whole condition, not just isolated symptoms.…”

“…6,[9][10][11] Adolescents and women report having to flag their symptoms multiple times 7,8,12 and experiencing long and confusing delays before receiving a diagnosis. [6][7][8]10,11 Delayed diagnosis is associated with dissatisfaction with the diagnosis experience 6 and with symptoms of anxiety and depression, 13 which may affect women's subsequent engagement with PCOS management and care. Delays in PCOS diagnosis are lost opportunities for symptom management, for counseling regarding future fertility, to improve quality of life, and for early engagement in screening and preventive strategies for metabolic complications.…”

“…6 Following diagnosis, women report confusion about their options for specialist care and medical therapy. 8 Women and adolescents with PCOS also often report a perceived lack of empathy from healthcare providers, leading to a lack of trust in healthcare providers for treatment, preventive strategies, and information. 8,10,12 Women's Information Needs While receiving a PCOS diagnosis can be a relief, 7 it could also lead to feelings of anxiety, frustration, or lack of control if women feel uncertain about the nature of the condition or if they do not have all the information they need.…”

“…8 Women and adolescents with PCOS also often report a perceived lack of empathy from healthcare providers, leading to a lack of trust in healthcare providers for treatment, preventive strategies, and information. 8,10,12 Women's Information Needs While receiving a PCOS diagnosis can be a relief, 7 it could also lead to feelings of anxiety, frustration, or lack of control if women feel uncertain about the nature of the condition or if they do not have all the information they need. 9,10,12 At the time of PCOS diagnosis, women want specific and practical information related to their symptoms about lifestyle management, fertility consequences, medical therapy, cosmetic treatments, potential long-term consequences of PCOS, and emotional support; yet this information is not often provided, or does not meet their needs.…”

“…9,10,12 At the time of PCOS diagnosis, women want specific and practical information related to their symptoms about lifestyle management, fertility consequences, medical therapy, cosmetic treatments, potential long-term consequences of PCOS, and emotional support; yet this information is not often provided, or does not meet their needs. 6,7,9,11,12,14 Research often identifies weight, menstrual irregularity, infertility, and hirsutism as key concerns among women with PCOS, 6,8,15 but concerns, information, and support needs differ across the life span and with personal background. [6][7][8]15 Women sometimes feel that the psychological effects of PCOS are underappreciated 9,10 or that their primary concerns go unrecognized.…”