“The whole package deal”: experiences of overweight/obese women living with polycystic ovary syndrome

Abstract

Background Polycystic Ovary Syndrome (PCOS) is a common female reproductive disorder with multiple manifestations. There are relatively few qualitative studies exploring the nature of living with PCOS despite its high prevalence. Qualitative research can enhance clinical practice via the provision of patient insights into the experience of living with their condition. Methods We conducted two focus groups and three semi-structured interviews of Australian overweight/obese women with PCOS aged 18–46 years between March and April 2017 who were recruited through social media advertising. Interviews and focus groups were audio recorded and transcribed verbatim. Thematic analysis was applied to the data, using the method of constant comparison. Results Ten women contributed data from two focus groups and two semi-structured interviews. Five themes emerged from the data: complexity of the condition with its multiple manifestations, difficulties with delayed diagnosis and lack of information provided after diagnosis, negative experiences on social media and online forums and the need for support, frustration over lack of a “cure”; and the impact of symptoms and concern about long-term sequelae. Conclusions Living with PCOS appears to generate a significant degree of anxiety about the future, dissatisfaction with current treatment models, and loss of feminine identity. Gaps in timely diagnosis, information and support provision need to be addressed. This includes supporting weight management as a fundamental concern for women with PCOS.

“I felt like she didn’t take me seriously”: a multi-methods study examining patient satisfaction and experiences with polycystic ovary syndrome (PCOS) in Canada

“…Another strength of this study was the involvement of peri- and post-menopausal women whose experiences and beliefs may not be transferable from the experiences of women of reproductive age. Previous qualitative studies largely involved women under 50 years of age [ 30 , 31 , 41 , 47 ].…”

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

“…Previous qualitative studies have also showed that women have a need for social support and connection with other women with PCOS [ 27 , 48 – 50 ] and support groups often enable women to do just that, whether that be online or locally [ 27 , 29 , 33 , 51 , 52 ]. A study evaluating the effectiveness of a nurse-led support group left participants feeling more empowered in self-management and benefitting from informational exchanges [ 53 ].…”

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

“…In a study by Coffey et al, those with PCOS experienced poorer health related quality of life compared to those associated with other chronic conditions such as asthma, epilepsy and coronary heart disease (32). Ee et al found that acne and facial hair were major contributors to poor mental health in some women (27). Himelein and Thatcher reported body dysmorphia was very high in nulliparous women with PCOS (33).…”