Vulvodynia: What It Is and Why It's Underdiagnosed

Vulvodynia is one of the most common causes of chronic vulvar pain in women, and one of the most consistently underdiagnosed. If you have been experiencing burning, stinging, irritation, or rawness in the vulvar area with no clear cause, you are not imagining it, and you are not alone.

Here is what I want you to know about this condition: it is real, it is recognized in the medical literature, and there are effective treatments. The problem is that many women never reach those treatments because they spend years searching for a diagnosis.

What Is Vulvodynia?

Vulvodynia is defined as vulvar pain lasting three months or longer, without an identifiable cause such as infection, skin disease, or neurological disorder. The International Society for the Study of Vulvovaginal Disease (ISSVD) classifies it into two main subtypes based on the pattern of pain: generalized vulvodynia, where pain is diffuse and not confined to a particular area, and localized vulvodynia, where pain is restricted to a specific site such as the vestibule (the opening of the vagina). Provoked vestibulodynia, a subtype of localized vulvodynia triggered by pressure or touch, is the most common form seen clinically (Bornstein et al., 2016).

The pain descriptors women use vary but there is a consistent cluster: burning, stinging, irritation, rawness, and sometimes sharp or knife-like sensations. Pain can be constant or intermittent, provoked by touch or contact, or spontaneous.

How Common Is It?

Estimates vary by study methodology, but population-based research suggests that approximately 8% of women in the United States have experienced vulvodynia at some point, with some estimates as high as 16% when lifetime prevalence is examined (Reed et al., 2012). A study by Harlow and Stewart (2003) found that 60% of women with vulvodynia symptoms had never received a diagnosis, and nearly half of those who had sought care had seen three or more providers without getting one.

Those are striking numbers. This is not a rare condition quietly tucked into the back of medical textbooks. It is genuinely common, and yet the diagnostic journey for most women is still painfully long.

Why Is It So Underdiagnosed?

There are several reasons, and they interact with each other in frustrating ways.

The first is provider training. Vulvodynia was not meaningfully included in most medical curricula until relatively recently, and many physicians, including gynecologists, have had limited exposure to it. A study by Harlow et al. (2003) found that 40% of women with vulvodynia symptoms were told by their providers that they could not find anything wrong.

The second is that vulvodynia has no visible markers in most cases. There is nothing to see on a pelvic exam that confirms it. Diagnosis depends on a detailed clinical history and a structured approach to ruling out other causes, neither of which happens quickly in a ten-minute appointment.

The third is stigma and dismissal. Pain in the vulvar area is often attributed to anxiety, relationship problems, or a low pain threshold. Many women I have worked with describe being told to 'relax,' 'use more lubricant,' or 'have a glass of wine.' This kind of dismissal delays diagnosis, undermines trust in the medical system, and often leads women to stop seeking care altogether.

What Causes It?

The etiology of vulvodynia is multifactorial and not fully understood, which is part of what makes it difficult to treat with a single intervention. Research has implicated peripheral sensitization of vulvar nerve fibers, central sensitization, pelvic floor muscle dysfunction, hormonal factors including oral contraceptive use, and psychosocial factors including anxiety and pain catastrophizing (Pukall et al., 2016). None of these factors operates in isolation, which is precisely why treatment approaches that address only one of them often produce limited results.

What Actually Helps?

The strongest evidence base points toward multimodal treatment. Pelvic floor physiotherapy has well-established efficacy, particularly for the muscle hypertonicity that commonly accompanies provoked vestibulodynia. Cognitive-behavioural therapy (CBT) has demonstrated effectiveness in reducing pain intensity and improving sexual function. Topical treatments including lidocaine and low-oxalate dietary approaches have evidence supporting their use for some subtypes. For provoked vestibulodynia specifically, vestibulectomy has strong surgical evidence in women who have not responded to conservative care (Bergeron et al., 2021).

The key message is that this condition is treatable. Many women who receive appropriate, coordinated care experience significant improvement. The barrier is rarely the availability of treatment. It is getting to the right diagnosis first.

If you have been dismissed, told your results are normal, or given explanations that do not match your experience, please keep advocating for yourself. A normal pelvic exam does not rule out vulvodynia. A diagnosis requires a clinician who knows what to look for and knows how to ask the right questions.

References

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., & Coady, D. (2016). 2015 ISSVD, ISSWSH and IPPS consensus terminology and classification of persistent vulvar pain and vulvodynia. Obstetrics & Gynecology, 127(4), 745-751.

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 & Gynecology, 206(2), 170.e1-170.e9.

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, 58(2), 82-88.

Pukall, C. F., Goldstein, A. T., Bergeron, S., Foster, D., Stein, A., Kellogg-Spadt, S., & Bachmann, G. (2016). Vulvodynia: Definition, prevalence, impact, and pathophysiological factors. Journal of Sexual Medicine, 13(3), 291-304.

Bergeron, S., Morin, M., & Lord, M. J. (2021). Integrating pelvic floor rehabilitation and cognitive-behavioural therapy for sexual pain: What clinicians need to know. Current Sexual Health Reports, 13(4), 144-152.