Storytelling to Undo Stigma: Sharing Patient Experiences of Recurrent Vulvovaginal Pain

PI Title: Dr Tori Ford

Lead member: University of Oxford

Background

75% of people assigned female at birth will get thrush at one point, but for 6% of people, this experience of discomfort and embarrassment becomes a repeated or persistent condition, known as recurrent thrush. Patients with recurrent vulval pain describe feeling shame, isolation, and frustration, made worse by a lack of understanding and ability to speak openly about these issues. Both patients and healthcare professionals report a lack of resources and support.

In my DPhil, I explored experiences of recurrent vulvovaginal thrush and used these findings to underpin improvements. Based on this research, I created a public-facing online resource for the Health Experience Insights (HEXI) platform with over 200 video and audio clips from patients where you can see and hear their accounts. Together with participants, we co-created a series of GIFs that visually represent their experiences.

View the resource here: https://hexi.ox.ac.uk/Recurrent-Vulvovaginal-Thrush/overview

I am now asking for support to disseminate this resource widely to stakeholders through a creative launch event (the design of which has been co-produced with my PPI group).

Aim

To amplify the voices of people with recurrent vulvovaginal pain, raise awareness about available resources, and shape future research and advocacy directions.

Objectives

1. Increase public understanding and visibility of recurrent vulvovaginal pain by sharing a co-produced resource that can inform knowledge, training, advocacy, and education

2. Centre lived experience in shaping future research, practice, and engagement priorities

Approach

This project draws on feminist and participatory methodologies. It values lived experience as expertise and is grounded in storytelling, arts-based translation, and co-production.

Activities

1. A public launch event for the HEXI resource

We will host a vibrant launch event to showcase the HEXI resource. The event will open with a curated video montage from the HEXI resource, showcasing powerful interview clips with diverse participants living with recurrent vulvovaginal pain. This will be followed by a series of short, impactful talks about the resource and from PPI members sharing their reflections about co-producing the resource. Attendees will be invited to browse our immersive GIF gallery that was co-created with study participants. These looping, animated visuals offer a creative means to highlight key themes from the research (such as feeling shame, finding support, and gendered experiences of pain) and will prompt discussion. We will set up participatory art stations where guests can contribute to a collaborative piece. The event will be documented and shared with photography, blogposts, and participant feedback.

2. A priority-setting meeting following the event

We will facilitate a follow-up priority-setting meeting with key stakeholders to explore future project ideas. We will approach this meeting like a workshop to map out key priorities, concerns, and questions. This session will support the co-development of a new grant proposal on vulvovaginal pain using the DEPTH framework (Dialogue, Evidence, Participation and Translation for Health).

Timeline

The project will run from September 2025-2026.

• September-December 2025: Plan and host launch event
• January-April 2026: Prepare and host priority setting meeting
• May-August 2026: Co-write reflections and begin developing grant proposals
• September 2026: Finalise project & reporting (with buffer room to ensure completion before December 2026)

Amount awarded: £2,000