Vulvodynia: A rough initiation into a deep sense of loss—Is grief literacy the missing link in healthcare?

Abstract

This article is based on a reflective first-person narrative of living with vulvodynia, and the findings from a master's study, titled “My genitals make me inadequate”—A phenomenological hermeneutic study about vulvodynia based on body, meaning and lived experience. One of the main findings in this study about the “lived experience” of living with vulvodynia was the sense of being “bereft of one's sexuality.” The narratives centered on disenfranchised grief and feelings of loss, loneliness, stigma, guilt and shame. Vulvodynia is described as a chronic genital pain condition without a clear identifiable cause. Provoked localized vulvodynia, is the most common type of vulvar pain in premenopausal women, affecting 7–13%. Experiences of vulvodynia are often discussed in terms of depression and anxiety, but rarely from a grief perspective. This article conceptualizes vulvodynia through the lens of loss and grief, integrating theories about the embodied and existential dimensions of sexuality. It argues that an increased “grief literacy” is essential to adequately address the lived experiences of those suffering from this condition.