Minimising Distress: How can we improve the lived experience of PCOS?
Polycystic ovary syndrome (PCOS) is a highly prevalent endocrine condition affecting between 5-18% of reproductive-aged women. There is no single diagnostic criterion, nor single definition due to its heterogeneous nature. As such, identifying PCOS is often a lengthy process.
Although a specific cause is still unknown, the syndrome is associated with increased levels of androgens in the blood stream, and can result in a multitude of symptoms. These include; ovarian cysts, menstrual abnormalities, hirsutism, androgenic alopecia, acne, obesity, infertility or high risk of miscarriage, and insulin resistance. Many of the symptoms, are associated with mood disorders a lower degree of life satisfaction, and lower quality of life.
This complex syndrome impacts women across their lifespan, significantly increases the risk of developing severe chronic illnesses, requiring an engagement in self-management and lifestyle adjustments.
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.
10 British-Asian women aged 18-27, living in South East London with a diagnosis of PCOS took part in semi-structured interviews to discuss their lived experience.
The transcribed interviews were analysed using Interpretative Phenomenological Analysis, as this methodology is well suited to the exploration of the psychosocial impact of health conditions.
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).
Communication about PCOS remains challenging for women particularly in relation to sexuality and fertility.
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.