Vulvodynia…vulvo…what?

After publishing an article on "Peace with Pain", we received multiple questions about what exactly is vulvodynia. We are fortunate to have Claudia Chisari in our team, NIHR PhD Researcher in vulvodynia, who will shed some light on vulvas.


Illustration by Paul Fossett

Vulvodynia... How a painful gynaecological condition is affecting millions of women -and therefore men- and why it needs to be talked about.


Apart from the highly inappropriate and inaccurate description of “depressed vagina” - not even vulva - on Sex and the City, Vulvodynia has received very little attention in the media, by the medical community and research, and it is therefore virtually unknown by most of us. But what is Vulvodynia and why men and women NEED to know about this condition?


Vulvodynia is a condition characterised by persistent pain (lasting more than 3 months) in the vulva (the external genitalia) with no known cause. The pain is often described as “burning”, like “acid poured on the skin” and can be localised to a specific part like the vestibule (the introitus of the vagina) or generalised to the whole vulva.


For some women the pain is provoked, caused by activities like sex, while for others the pain comes spontaneously. Most of the time, women recognise it when they start to be sexually active, having a tremendous impact on women’s mental health, physical health, relationships, and body image. Vulvodynia is estimated to affect up to 25 % of women (that’s 1 in 4 women!), yet we barely hear about it. The prevalence is thought to be underestimated since many health professionals still dismiss the problem as psychological or are not aware of It. Reflecting this, women on average consult four or more doctors before receiving a diagnosis, resulting in unimaginable personal and physical suffering.


Vulvodynia, being female pain, is still a subject of stigma and embarrassment. Medical professionals, women and men, often do not acknowledge the pain or do not believe in the pain, saying that it’s “all in the head”. Many women still hide their pain from their partners for fear of being judged or left alone. Some women think pain is normal, that they just need to “man-up”. Some women, however, know that their pain is real, and they fight until they have an answer.


Vulvodynia is estimated to affect up to 25 % of women, yet we barely hear about it.

A condition so common yet so unknown and neglected raises many questions behind its invisibility. Why does no-one know about it? Perhaps a culture too often focused on NOT talking about our vulva has not given enough validation to women’s health and pain has led to this.


A culture of shame and silence, where sex is portrayed as a perfect experience in which there is no space for an issue like this, especially if it comes from a woman. A culture of sex being almost exclusively focused on the goal (being penetration and orgasm) rather than being considered an experience, a chance to connect.


Importantly, if 1 in 4 women experience genital pain, should we reconsider the way we see sex? Yes, perhaps it’s time to rethink sex. Perhaps it’s time to acknowledge that while pain is not normal, it is far more common than we want to admit, and chances are that if we are more open to this idea, we can contribute to enhancing women’s health (and the overall quality of sex-life).


Luckily things are changing and in recent years, the research in Vulvodynia has advanced and has seen more funding coming its way. In terms of treatment, there are several options to help women better manage their pain and the best outcomes are often achieved when the approach is multidisciplinary (physical therapy, medications, and psychological support).

Vulvodynia is not a female condition, it is a medical condition, and we need better education on such a prevalent disorder so that we can start a conversation that is more open and inclusive - for both sexes’ sake!


More information on Vulvodynia and available treatments:

https://www.nhs.uk/conditions/vulvodynia/

http://www.vulvalpainsociety.org/vps/


References

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., ... & Starke, N. B. (2016). 2015 ISSVD, ISSWSH, and IPPS consensus terminology and classification of persistent vulvar pain and vulvodynia. The journal of sexual medicine, 13(4), 607-612.

Harlow, B. L., & Stewart, E. G. (2003). A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?. Journal of the American Medical Women's Association (1972), 58(2), 82-88.

Reed, B. D., Harlow, S. D., Sen, A., Legocki, L. J., Edwards, R. M., Arato, N., & Haefner, H. K. (2012). Prevalence and demographic characteristics of vulvodynia in a population-based sample. American journal of obstetrics and gynecology, 206(2), 170-e1.

Nguyen, R. H., Ecklund, A. M., MacLehose, R. F., Veasley, C., & Harlow, B. L. (2012). Co-morbid pain conditions and feelings of invalidation and isolation among women with vulvodynia. Psychology, health & medicine, 17(5), 589-598.

Sadownik, L. A., Yong, P. J., & Smith, K. B. (2018). Systematic review of treatment outcome measures for vulvodynia. Journal of lower genital tract disease, 22(3), 251-259.lidation and isolation among women with vulvodynia. Psychology, health & medicine, 17(5), 589-598.

Falsetta, M. L., Foster, D. C., Bonham, A. D., & Phipps, R. P. (2017). A review of the available clinical therapies for vulvodynia management and new data implicating proinflammatory mediators in pain elicitation. BJOG: An International Journal of Obstetrics & Gynaecology, 124(2), 210-218.

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