It starts with a sense of discomfort and before you know it, you feel a burning sensation in your entire vulva. Sounds painful? Well, these are the symptoms that affect between 8-10% of women of all ages. The under-recognized medical condition called vulvodynia is poorly understood and often has no clear cause.

Vulvodynia, a blanket name for persistent, unexplained pain around the vulva area, is rarely talked about. However, in 2021, this condition started receiving some much-needed recognition after not being taken seriously for the longest time.

While some states recognize vulvodynia as a chronic pain condition, others are more reluctant. One such example is Italy, whose medical system does not cover the costs of treatment for this illness. However, things are about to change in the near future, as a bill was presented in November 2021 at the conference “Vulvodynia and pudendal neuropathy: a pain without a voice”. The bill calls for vulvodynia and pudendal neuralgia to be recognized as chronic disabling diseases and to be included in the list of Essential Levels of Care (LEA).

This is an important step not only for Italy but for people suffering from vulvodynia from all over the world. The disease used to be ignored because the symptoms and causes are often confused with those of other vulvar diseases such as recurrent candidiasis, herpes, squamous cell carcinoma, etc. But there is no apparent medical pattern for vulvodynia at the moment, and the pain may appear spontaneously and may not be focused on a single area. Nearly 40% of women with the condition do not get an accurate diagnosis, according to the USA National Vulvodynia Association, and some countries don’t even acknowledge it as a serious condition. All in all, for all the pain and discomfort it causes to so many people, we know surprisingly little about vulvodynia.

Neurobiological explanation

In light of this, two Spanish researchers have presented a new interpretation of the disease.  Their 2021 study, published in the International Journal of Environmental Research and Public Health, looked at the causes of vulvodynia from a neurobiological perspective. The conclusions reached could change the way we understand the condition.

Their investigation suggests that the pain experienced by patients with vulvodynia is due to a dysfunctional response of the Central Nervous System. So, the condition can be classified as a type of nociplastic pain — a type of pain that is mechanically different from the more common types of pain, which are caused either by inflammation or nerve damage. Essentially, in nociplastic pain, although there isn’t any damaged tissue or inflammation that would cause the activation of nociceptors, an altered nociception process is initiated.  Its causes are not fully understood, but researchers believe it has something to do with an imperfection in how the central nervous system processes pain signals. The process is also thought to be an attempt of the body to protect itself against any infections by triggering a defense mechanism, felt as acute pain. The archetypal condition of nociplastic pain is fibromyalgia, and it may also play a role in the so-called long COVID syndrome.

Recent research has found that vulvodynia falls into the category of dysfunctional pain, described as intense pain, which occurs in the absence of a stimulus and has no protective function. The pain can intensify when exposed to certain physical or psychological factors, like wearing plastic underwear or tight pants, using scented wipes or harsh soaps to clean the vagina, sitting on a hard surface, etc.

A case study of 349 women with vulvodynia discovered that patients tend to develop a chronic pain acceptance, meaning they learn to ignore the feeling and engage in activities despite the pain. However, the COVID-19 pandemic has reportedly altered the symptoms; people who participated in the study signaled a decrease in pain, which may be due to “doing fewer daily activities and staying at home”.

This is still just a theory, but while the negative physical effects have diminished, the psychological ones have intensified. During the pandemic, depression reached its peak among the entire population, but especially among individuals who already had similar problems.

Psychological issues

Psychological side effects are common in people with vulvodynia. The intensity of the pain could cause anxiety, depression, or pain-related fear.

The problems don’t stop here; people suffering from vulvodynia are prone to rejecting romantic relationships, psychosexual therapist Lisa Etherson tells ZME Science. The reason for this is that they expect love and intimacy to lead to painful sex.

“The more anxious you are about the pain, the more likely it is that the pain is going to increase. For example, if you are anxious about the fact that sex is going to be painful, which it will probably be, you may also experience the pain from vaginismus [in addition to vulvodynia]”, Etherson explains.

Anesthetic gels or lubrication may help reduce discomfort during intercourse. However, “it’s important to consider that sex isn’t just about intercourse or penetration. There’s lots and lots of ways that you can have sex and have a really nice time”, she adds.

The main interest for a person with vulvodynia should be understanding their own body and the areas that are more painful. A safe practice to try this is masturbation, because it gives people total control over their bodies. They can find out what they like and then communicate their needs to their partner. But this is merely a way to deal with the pain and discomfort, not a way to treat the underlying problem.

Treatment

So what can be done to stop the pain? Dr. Nithya Ratnavelu, a gynecologist, agrees that the most important thing is to learn the responses of your body and mind to stimuli.

She says that the pain becomes “like a reflex that’s built up” and even the thought of something bad can cause muscle spasms.  This reinforces the idea that vulvodynia may be the result of a malfunction of the Central Nervous System. Ratnavelu recommends pelvic floor exercises to people suffering from this condition.

These exercises “retrain your mind, so you’re refocusing your energy not on the pain, but on the muscles by teaching them how to squeeze and release”, she explains.

In addition to exercising (often prescribed in conditions associated with nociceptive pain), people can try cognitive behavioral therapy and electrical stimulation, which also redirects attention from the pain so that women can break the cycle. Although there isn’t a single specific treatment for vulvodynia, there are some medications that can help relieve pain: antidepressants, inhibitors, hormonal creams, anesthetics.

Having an illness is hard, but not knowing what caused it or how to treat it properly makes things even worse. While this used to be the reality for people with vulvodynia, 2021 shed some light on the pain condition. Our understanding will, hopefully, continue to expand in the following years, so that more patients receive the correct diagnosis and treatment.