The silent and widely impacting cost of Vulvodynia: lessons learned and future recommendations

Multiple studies show that Vulvodynia is a widespread condition that involves persistent pain in the vulva, which refers to external female genitalia. However, Vulvodynia remains largely underdiagnosed and under-researched and has poor treatment options. In this blog, Claudia Chisari, a final year NIHR Maudsley BRC PhD Candidate, discusses Vulvodynia, the lessons learnt from her research, and recommendations to improve support for people living with it.

Vulvodynia

Vulvodynia refers to persistent pain in the vulva. This can be triggered by touch or pressure which can happen during sexual activities or can arise spontaneously, or it can be a mix of both. Vulvodynia affects up to 18 per cent of people with vulvas. Yet, there is little general awareness of Vulvodynia, and the condition is often misunderstood.

Data show that, on average, people with Vulvodynia see 3 or more doctors before receiving a diagnosis and that often a diagnosis is never reached. While Vulvodynia is considered and treated as “pain during intercourse”, we also know that women with Vulvodynia live with vulvar pain daily, even without intercourse. It is persistent pain in its own right and not only sexual pain.

Why “It’s not all in your head”

Like all pain, Vulvodynia is influenced by many factors which can be biological, psychological, or social factors, so called “biopsychosocial factors”. Proposing that psychological and social factors play a role does not mean that the pain is “in your head” and we know from research that these factors can have a big impact on the suffering that can come with Vulvodynia.

The wide-ranging impacts of the pain call for better representation, diagnosis, and treatment options for people with this condition.

Research challenges

Given this diversity of impacts, my research aims to explore Vulvodynia in a more comprehensive way that includes psychological and social factors alongside the biological factors.

I have also explored a potential therapeutic approach based on Acceptance and Commitment Therapy (ACT) to improve the pain, alongside the emotional, sexual, and daily life impacts of Vulvodynia. ACT is a form of psychotherapy that uses a range of acceptance, mindfulness exercises, and strategies for behaviour change aimed at increasing psychological flexibility, which is our ability to be open to and aware of all our experiences so we can move through life in valued life directions. Psychological flexibility is increased in ACT by developing these three skills: being open, aware, and active. Being open involves welcoming and accepting life as it is, without trying to change or alter it. Being aware means noticing all your experiences, including your thoughts, feelings and memories. Being active concerns doing the things that matter to you and behaving in ways that are informed by and consistent with your values.

Research insights on impact of Vulvodynia

Vulvodynia has a large emotional and social toll which includes the ability to carry out routine tasks, to work and to socialise with friends. This is influenced by how Vulvodynia is understood by others, including healthcare professionals. I recently published two studies that suggest people with Vulvodynia experience perceived injustice.   This includes feelings such as “others do not understand my condition”. In addition, body-image concerns may be common in women with Vulvodynia and may contribute to distress. This invalidation around pain is often found in women with other pain conditions, highlighting the need for systemic change to improve understanding and reduce gender disparities in pain care.

The interpersonal impact of Vulvodynia is very important and how partners respond to the pain and how people with Vulvodynia interact with partners is crucial. For instance, greater sexual communication is associated with better outcomes in Vulvodynia.

My research also showed that the experience of Vulvodynia is influenced by whether someone experiences spontaneous or provoked pain. For instance, we found that for people with vulvar pain provoked by pressure or touch (for instance intercourse, or tampon insertion), there is a greater relevance for factors such as body-image in the context of sexual activities. This may be due to the “narrower” impact of Provoked Vulvodynia on sex, which tends to be more associated with factors such as body-image and sexual variables.

Conversely, we found that for women who have spontaneous or mixed Vulvodynia depression is a bigger factor. This may be because the pain in this subtype affects several aspects of a person’s life, and so impacts more on their mood.

Therapeutic approaches for Vulvodynia

Acceptance and Commitment Therapy (ACT) is a form of psychotherapy that has been successfully applied to persistent pain but not previously to Vulvodynia. ACT focuses on fostering willingness to experience pain so that important activities can be pursued, there is an increase in present-moment-awareness, and people are enabled to clarify and act upon what is personally important to them. My latest study applied ACT in women with Vulvodynia and found that ACT led to some improvements in women’s pain and sexual impacts, although this varied greatly from person to person, suggesting there is no “one size fits all”. To test the treatment, I used a novel method (“single case design”) where I intensively tracked the progress of seven women during ACT. This helped to understand the experience of Vulvodynia and how a person responds to treatment are highly personal.  

The future of Vulvodynia and tips for improved care

1. While things are improving, better education on Vulvodynia from healthcare professionals can significantly enhance people’s experiences.
2. More research is needed to improve depression in women with Vulvodynia and on those who experience spontaneous/mixed Vulvodynia
3. ACT may represent a promising avenue in Vulvodynia.
4. Lifestyle changes, support groups, and accessing information from organisations like the Vulval Pain Society can be helpful. 
5. There is a need to focus on methods to assess how treatments might work for each individual rather than groups of people on average.
6. The partnership with the Vulval Pain Society greatly benefitted my work, highlighting the need to continue to partner with women with Vulvodynia to improve care.

More information for people affected by Vulvodynia is available at the Vulval Pain Society.