Living with grief: a phenomenological analysis of the lived experience of PCOS

Abstract

Background: Polycystic ovary syndrome (PCOS) is a highly prevalent endocrine condition affecting between 5-18% of reproductive-aged women. There is no single diagnostic criterion and identifying PCOS is often a lengthy process. Although a specific cause is still unknown, the syndrome can result in a multitude of symptoms. These include; ovarian cysts, menstrual abnormalities, hirsutism, androgenic alopecia, and insulin resistance. This study sought to understand the adjustment process after diagnosis, in order to explore the psychosocial experience of women as they face the bodily changes caused by PCOS. Methods: A purposive sample of 10 young women living with a diagnosis of PCOS took part in semi-structured interviews. The transcribed interviews were analysed using Interpretative Phenomenological Analysis. Findings: Four super-ordinate themes, overlapping in nature, were drawn from the analysis; Isolation (internalising difference, social insecurity), Helplessness (lack of choices, diagnostic process), Resilience (increasing knowledge, acquiring support), Grief (gender expectations, potential futures). Discussion: The findings suggest that further support is needed for women during the diagnostic process as well as after appropriate treatment for symptoms has commenced. Stigma epitomises the patients’ experience of PCOS and often results in avoidance behaviours and isolation. This should be recognised by healthcare professionals in order to facilitate open conversations, reduce misinformation, minimise distress and improve overall quality of life. Through the development of appropriate interventions healthcare professionals can assist in helping women develop adaptive coping strategies in order to establish a more positive sense of self that is not defined by their illness.