Exploring the healthcare experiences of people living with vulvodynia

Abstract

Section A
Background and Aims: Vulvodynia is defined as vulvar pain lasting longer than 3 months without a clear cause. This systematic review aimed to synthesise qualitative literature exploring women’s experiences of healthcare including barriers to care and experiences with professionals.
Methods: Medline, Embase, CINAHL, Web of science and ProQuest TM Dissertations and Theses Citation Index were systematically searched in June 2025. Sixteen eligible qualitative papers were identified, and data was combined using a thematic synthesis.
Results: Sixteen papers were identified representing 243 participants. The data was organised into four analytic themes, gaps in knowledge, ‘fighting’ for support, experiences of dismissal and hope for the future.
Conclusions: Medical misogyny within healthcare systems appeared to underly experiences of ‘fighting’ for fragmented care, inappropriate treatment and being dismissed. The importance of positive interactions with HCPs and providing hope to counter these experiences were highlighted alongside the need for holistic care. Future research is required exploring healthcare experiences in different populations based on vulvodynia diagnosis and demographics. Further training for professionals, interventions targeting stigma and multi-disciplined approaches to care are recommended.

Section B
Background: Vulvodynia is a persistent vulval pain condition situated at the intersection between persistent pain and gender. Negative experiences in healthcare services and psychosocial implications of vulvodynia have been documented. National guidelines recommend psychologically informed approaches to support a multi-disciplined approach to care.
Aims: This study aimed to explore people’s journey through UK psychologically informed services and how this shapes their narrative of vulvodynia.
Methods: Eleven participants completed interviews which were conducted and analysed using a narrative approach. This approach views stories as ‘knowledge’ to counteract the well documented power operations related to the medical system and gender.
Results: Most stories detailed a ‘stuck in struggle’ plot, navigating difficult experiences and remaining stuck in uncertainty. However, growth by ‘rewriting’ stories and ‘communion’ through attendance to a psychologically informed group emerged. Narrative processes appeared including using rhetorical questions, informative approaches and the voices of others to narrate their stories. Beneficial psychological support experiences acted as a means of ‘navigating’ the journey, counteracting power imbalance and creating a shared understanding of pain.
Conclusion: Findings highlight the need for psychologically informed interventions that help people re-author their stories, navigate uncertainty, integrate pain into identity and build community connection as part of a multi-disciplinary approach to care. Implications are discussed regarding psychologically informed MDT staff training, community initiatives, support groups and improved treatment pathways.

Date of Award	2026
Original language	English
Awarding Institution	Canterbury Christ Church University