“It's all my fault”: a qualitative study of how heterosexual couples experience living with vulvodynia

Vulvodynia, a chronic genital pain disorder with a high lifetime prevalence among women, has a significant negative impact on both women and their partners. Although there is a growing body of literature on the experiences of women with vulvodynia, there has been little research on the condition's implications for partners and romantic relationships. The aim of this study is to explore how heterosexual couples experience living with vulvodynia.Eight Norwegian women diagnosed with vulvodynia by gynecologists were recruited with their partners (couples aged 19-32 years). Data was collected via individual semi-structured interviews and analyzed using inductive thematic analysis.Three main themes were identified in the analysis: Mysterious disorder, Social exclusion and Sexual expectations. The results show that the couples struggle with understanding the pain, as well as navigating their social and sexual lives. We discuss these findings in light of a new theoretical model: the fear-avoidance-endurance model of vulvodynia.Heterosexual couples living with vulvodynia experience communication difficulties with partners, health professionals, and their social network. This sustains avoidance and endurance behavior, increasing pain and dysfunction over time and giving rise to feelings of powerlessness and loneliness. Social expectations regarding male and female sexuality also promote guilt and shame for both parties in couples affected by vulvodynia. Our results suggest that heterosexual couples living with vulvodynia, as well as health professionals treating them, should be helped to communicate more effectively in order to break vicious circles of maladaptive avoidance and endurance behavior.