Research Outcome: The Lived Experience of PCOS

In July 2018, Treasa McCarthy contacte Verity about conducting a study on ‘The Lived Experience of PCOS’, below is a summary of what she found.

PCOS may affect how women experience their intimate relationships, particularly as many women experience difficulties with sexual intimacy, mood and self-esteem. This study interviewed seven UK-based young women with PCOS to explore their experience of being in an intimate relationship. 

The women interviewed felt they were not ‘proper’ women due to their appearance and fertility difficulties and felt ashamed, guilty and undeserving of their partners. For some women, power imbalances in their relationships developed, where their relationship enduring felt dependant on them either becoming ‘proper’ women or their partners accepting their ‘shortcomings’; this evoked feelings of anxiety, frustration and sadness. Most partners assured them that they would not end the relationship, however this often failed to change how they felt. 

To try to become ‘proper’ women, they battled against their bodies.  Parenthood battles were largely shared with partners, and sometimes strengthened their relationships, however the battles to conform with beauty norms were usually hidden. Sexual intimacy was difficult, as they struggled to be open with partners, or to believe they found them attractive. Some partners tried to address their insecurities, however assurances often failed to reassure. For others, partners appeared to reinforce their distress through insensitivity or lack of understanding. The prolonged parenthood battles could also erode sexual intimacy, as enjoyment was incompatible with failures to conceive. Taken together, these battles made sex a stressful, pressured activity. 

Overall, this study highlights the importance of universal care for women with PCOS that includes psychological and peer support.