Help-seeking experiences and intimate partner support in vulvodynia: A qualitative exploration

Abstract

Background: Vulvodynia is a poorly understood chronic pain condition characterized by persistent and unexplained pain in the vulva. Given the intimate nature of the pain, partners may play an important role in promoting self-management and help-seeking behaviours among women with vulvodynia. Objectives: The current study aimed to explore the role of partner support in pain experiences and help-seeking behaviours among women with vulvodynia. Design: A qualitative interpretive design was used. Methods: Ten women with vulvodynia (M age = 37.9 years) were interviewed using a semi-structured non-directive topic guide. Data were analysed using reflexive thematic analysis. Results: Three themes around help-seeking experiences were constructed from the data: (1) ‘It’s Been a Battle’ – Failed by the Healthcare System; (2) ‘It’s Just the Vulva’ – Dismissed by Healthcare Professionals; and (3) ‘I Diagnosed Myself’ – The Patient Becomes the Expert. Participants described negative help-seeking experiences characterized by long delays to diagnosis, lack of awareness and understanding from healthcare professionals, minimization of symptoms, and having to advocate for and demand care. A further three themes pertaining to partner support were also developed: (1) ‘That Person to Listen to You’ – Source of Emotional Support; (2) ‘Why Don’t You Try This?’ – Finding Solutions Together; and (3) ‘He Forgets that it’s Still There’ – Vulvodynia is a Foreign Concept. Partners provided emotional support and showed empathy and understanding, and practical support by accompanying women to medical appointments and help with pain management. However, participants felt partners’ understanding of vulvodynia was limited and that this impacted their relationships. Conclusions: Findings highlight a lack of continuity of care and multidisciplinary approach to treatment, with help-seeking experiences being mainly negative in this sample. Increasing public awareness of vulvodynia and improving healthcare access is crucial to improving physical and psychological outcomes for this group. Partners can play an important role in supporting people with vulvodynia; however, other outlets of support should be further explored.