A first-of-its-kind University of Stirling-led study could lead to quicker and more targeted support for vulvodynia - a painful chronic condition estimated to affect more than one in 10 women with no known cause.

Vulvodynia is pain in the vulva that lasts for at least three months, and causes a burning, throbbing or stabbing sensation. It can start on its own or when the vulva is touched - such as when inserting a tampon or having sex.

Women with vulvodynia often experience delayed diagnosis, ineffective treatment and significant quality of life impacts, compounded by social stigma and negative healthcare experiences. These challenges are made worse by the lack of standardised guidelines and limited awareness among healthcare professionals

A team at the University of Stirling, led by PhD student Athina Zoi Lountzi, set out to identify critical knowledge gaps by asking patients, clinicians, and researchers what should be prioritised to improve both care and outcomes.

They found that a consensus emerged for those living with the condition:

• The need to create a clear, person-centred care pathway and improve clinician awareness, education and training about vulvodynia.
• The requirement to develop multidisciplinary pain teams across GPs, gynaecologists, physiotherapists, nurses, sexual-health and mental-health specialists.
• The importance of providing accessible, reliable patient information on treatments and self-care.

Other priorities included standardising outcome measures in research, better mental-health support, and a focus on finding a prevention.

Athina, of Stirling’s Faculty of Natural Sciences, said: “This is, to our knowledge, the first participatory, consensus-driven prioritisation focused specifically on vulvodynia research.

“It shows that patients and clinicians agree that better education for healthcare providers, improved care pathways and multidisciplinary support are top priorities for vulvodynia research.

“These findings highlight the importance of integrating lived experiences alongside clinical and academic expertise to guide where funders, policymakers, and researchers should invest effort next. Especially around care pathways, coordinated services, and high-quality patient information.”

Patients often feel abandoned

Worldwide it is estimated that vulvodynia impacts between 10 and 28 percent of women of reproductive age, with experts believing this to be an underestimate due to the frequency of misdiagnosis and limited understanding of the condition.

Those involved now hope that the findings will lead to faster, more joined-up care for patients, embedded training and guidance for clinicians and a roadmap for more targeted funding and policy development.

David Nunns, founder of the Vulval Pain Society and Consultant Gynaecological Surgeon specialising in vulval disease, said: "Vulvodynia can influence the dynamics of relationships, sometimes creating feelings of guilt and strain. It leads to stigma, an avoidance of activities, and it is something that people can find difficult to talk about.

“It can also cause challenges at work, such as needing time off and having to explain the pain, while experiences with healthcare can often be largely negative and frustrating.

“We hear of cases where doctors focus only on ruling out STIs and often dismiss pain. People can often feel abandoned once standard tests come back clear, and once the diagnosis of vulvodynia was given we’ve seen examples where doctors stop looking for solutions.”

The research used a modified electronic Delphi (e-Delphi), an online survey and discussion method used to reach agreement, in three phases, combined with online focus groups.

Participants, including patients, clinicians, researchers, and those supporting people with vulvodynia generated topics, then rated and ranked them to reach a consensus on priorities.

Data was collected online before being analysed descriptively and using ranking methods.

Building on the findings, Athina has now commenced a Scottish Graduate School of Social Science-funded PhD at Stirling to tackle the top priority identified - developing a person-centred care pathway for chronic vulval pain, through co-design with patients, clinicians, commissioners and third-sector partners.

She added: “I hope my work will improve healthcare access, reduce gender health inequities, and promote wellbeing, laying the foundation for a supportive, person-centred environment where people with Chronic Vulval Pain feel understood and able to access the care they need”

The research was conducted in partnership with the Usher Institute at the University of Edinburgh. Recruitment and engagement were supported via professional and community networks, including the British Society for the Study of Vulval Disease and the Vulval Pain Society.

Research priorities in vulvodynia: A modified Delphi study was funded by Wellbeing of Women and the British Society for the Study of Vulval Disease and is published in Women’s Health.

Jeremy Barrett, Director of Research at Wellbeing of Women, said: “This important study marks a much-needed step forward in addressing vulvodynia. By putting the voices of those affected at the heart, it has identified clear priorities for future research - with person-centred care pathways emerging as the top need.

“We’re proud to have funded work that brings together lived experience and clinical insight to guide what comes next.

“Now, we need greater investment in research focused on these priorities: better clinician education, joined-up multidisciplinary care, and accessible, high-quality patient information.”