Concerns and expectations in women with polycystic ovary syndrome vary across age and ethnicity: findings from PCOS Pearls Study

Abstract

ObjectiveTo understand and explore the perceptions and opinions of women with polycystic ovary syndrome (PCOS) and further delineate the variations across age and ethnicity.DesignQualitative survey focussed on lived experiences of people with PCOS. Participants could share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from the audio were transcribed verbatim. Responses were coded by two study members independently, using a thematic inductive method with NVivo 12. Two senior study members then reviewed these codes to identify common themes.SubjectsWomen with PCOS aged 18-60 years.Results43 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. Poor mental health was the most 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 regarding weight gain and infertility. As part of the recommendations by participants, it was emphasised 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. Women in their 20s expressed distress due to poor mental health, needing a longer time to get the diagnosis, and having weight and eating concerns. While women with PCOS in their 30s discussed their menstrual irregularities and fertility issues, those in their 40s expressed their concerns about the societal expectations of women when diagnosed with PCOS. The concerns varied across ethnicities as well.ConclusionPCOS has wide-ranging consequences for women living with the condition, with many dissatisfied with the clinical support they currently receive. The concerns and expectations vary across ages and ethnicities. Therefore, we propose involving women with PCOS to co-create clinical and educational resources informed by lived experiences to provide end-user-informed services.

Self-esteem and body image satisfaction in women with PCOS in the Middle East: Cross-sectional social media study

“…Our study revealed that 65.2% PCOS subjects reported being overweight or obese, significantly more than non-PCOS subjects. Obesity has been linked to depression in the general female population, and around two thirds of women with PCOS are overweight or obese [27], in accord with the study findings here where increasing obesity led to greater dissatisfaction that was in accord with a meta-analysis showing lower scores in the weight subscale for the Body Esteem Scale for Adolescents and Adults [7], and reflected those in the lived experience study in PCOS where feeling less feminine was in part related to weight gain [8]. Obesity has been shown to increase the likelihood of losing self-esteem and developing a negative body…”

“…Within the 2023 international PCOS guidelines, there is the inclusion of body image as a new recommendation for the assessment in PCOS management [ 6 ], and a systematic review highlighted the body image concerns that women with PCOS have [ 7 ]. In a qualitative lived experiences in PCOS study poor mental health, dermatological and menstrual issues were highlighted, together with the report that more than half felt less feminine, and these also varied with ethnicity [ 8 ]. The term "body image" refers to a person’s perception of their body regarding their appearance, size, health, normal functioning, and sexual desires [ 9 ].…”

The role of meditation and mindfulness in the management of polycystic ovary syndrome: a scoping review

“…PCOS can manifest with various symptoms across different life stages, including reproductive, dermatological, metabolic, and psycho-socio-sexual problems ( 2 ). Despite this multifaceted nature, the psychological, emotional, and social aspects associated with PCOS often receive inadequate attention in clinical practice, leaving many adolescents and women dissatisfied with the prevailing standard of care ( 3 – 6 ). Consequently, women with PCOS seek personalised healthcare that can address their specific health concerns, especially focusing on psychological and emotional well-being and resilience ( 7 – 10 ).…”