Vulvodynia: A Mysterious Vulvar Pain

As you may already know (from your own painful experience and often fruitless research), the medical circle has a tough time to define vulvodynia.

One thing they do seem to agree upon is that this isn’t a simple gynecological condition and that the solution doesn’t lie in a one-size-fits-all approach.

Vulvodynia is a chronic pain condition affecting the vulva (yep, if you are the proud owner of female reproductive organs then this is the area that can be seen between your legs – also called external genitalia or the vulvar area).

Vulvodynia is a type of vulvar pain that lasts at least 3 months, occurs without a clearly identifiable cause (it can’t be explained by another health problem), with the absence of any visible abnormalities (the affected vulva looks normal), and which may have potential associated factors.

Chronic vulvar pain is mostly described as burning, however, each person can experience pain differently. Some describe the pain also as stinging, aching, throbbing or itching. Other sensations often mentioned are soreness, rawness, irritation or feeling swollen.

Nowadays, to characterize the types of vulvodynia, the medical community uses a pain-based system. Vulvodynia can affect your entire vulva or the pain can devour different parts of it, each with distinct intensities, durations, and onset.

The type of pain is characterized by:

1. Localized Pain – localized pain occurs in a specific vulvar area:

2. Generalized Pain – generalized pain is diffused. It occurs in many or all of the above-mentioned parts of your vulva.

3. Mixed Pain – localized and generalized pain occurs at the same time.

1. Provoked Pain – pain is provoked when pressure is applied to the vulvar area. Which can happen at any time and anywhere, if you:

2. Spontaneous Pain – pain just happens, without any pressure
3. Mixed Pain – provoked and spontaneous pain happens together

1. Primary – the pain has been there since first intercourse which means that the person has never experienced pain-free sex
2. Secondary – there was a period of pain-free sex before the pain hit

Based on this pain-based system used to characterize vulvodynia, there are two major subtypes of vulvodynia:

Formerly called vulvar vestibulitis or vestibulodynia – the most common and well-recognized subtype of vulvodynia, which is localized and characterized by pain at the vaginal opening called vestibule. Pain is provoked by sex, tampon insertion, gynecological exam, exercising, and wearing tight clothing. The vestibule might appear inflamed and red. It is also described as primary or secondary.

Formerly called essential or dysesthetic vulvodynia – is characterized by unprovoked, spontaneous, diffused pain, spread out throughout the entire vulva. Pain may be constant or intermittent.

Vulvodynia doesn’t have identifiable causes, nor externally visible symptoms. On top of that, a doctor’s exam can appear completely normal. Because of this, vulvodynia is often either undiagnosed or misdiagnosed.

It is rather “normal” that you may seek help from many health care providers (like gynecologists, family doctors, dermatologists, urologists, alternative health practitioners, etc.). They are usually not familiar with this condition, or even if they are – they don’t know what to do with it.

In the end, many of us, simply stop seeking help. Because it seems frankly pointless.

Diagnosis of vulvodynia is a diagnosis of exclusion.

If your doctor can define the culprit of your vulvar pain through proper diagnosis, and then resolve it via adequate treatment (which eventually makes you pain-free) then YOU DON’T SUFFER FROM VULVODYNIA. You suffer from vulvar pain secondary to (a.k.a. caused by) whichever condition you were treating for. Like lichen sclerosus, for example.

However, if a cause of your pain can’t be found and you are still in pain, despite various diagnoses and treatments, then your doctor is able to label your pain as vulvodynia.

Additionally, vulvodynia can also co-exist with other vulvar conditions. Which means that you can suffer from vulvar pain caused by contact dermatitis (for example) and vulvodynia at the same time.

On top of this, the medical community is slowly starting to understand that vulvodynia might be a multifactorial condition – caused by more that one single culprit.

There are no specific tests to diagnose vulvodynia. Diagnosis is made based on the exclusion of other vulvar conditions.

You can find examples of the types of examinations used to assess vulvodynia below:

According to Western Medicine, vulvodynia has no identifiable cause. Because of this, there are a lot of tags that might get stuck to your condition. One of them is still relatively widespread: “it is all in your head” (my favorite, of course).

Vulvodynia is an idiopathic condition. However, the fact that your vulva appears normal does not mean that there is no cause for the discomfort. It simply has not been identified by the doctors yet!

However, potential associated factors now being defined by the medical community are the first steps into concrete progress in research about vulvodynia!

Why? Because before the 2015 classification (when vulvodynia terminology was updated based on new findings), sufferers were left alone with absolutely nothing regarding the etiology of their condition.

Below, you can find the potential associated factors that may cause your vulvodynia:

If the cause of your vulvar pain is possible to define and resolve, then YOU DON’T SUFFER FROM VULVODYNIA. You suffer from vulvar pain secondary to (a.k.a. caused by) whichever condition you were treating for.

Vulvar pain (not vulvodynia) is an obvious and often visible symptom of some other problem going on in your body and there are many diseases that can cause it.

Below, you can find some conditions that may cause your vulvar pain:

Based on research, the medical community is starting to acknowledge that vulvodynia might be a multifactorial condition – caused by more that one single culprit.

Because of this, the cookie-cutter approach is not the way to go anymore. Not everyone needs surgery or even physical therapy!

Your treatment should be chosen accordingly, based on your specific case of vulvodynia and your individual needs. The typical treatment plan is based on “trial and error.” It usually starts with non (or less) invasive treatments and based on results, is escalated to more invasive ones.

The important thing to remember is that because of the tricky nature of this condition, in most cases only a multi-disciplinary approach can give lasting results.

There are two main and significantly different directions which you might want to explore during your journey with vulvodynia: the traditional medicine approach, and the complementary and alternative medicine approach.

The first – traditional medicine – approach includes:*

The second – complementary and alternative medicine – approach includes*:

*These lists are not exhaustive.

In the past, doctors believed that vulvodynia is a rare condition. But as research is showing right now, it simply has been under-recognized.

Vulvodynia affects many. The estimates of how many women and girls are affected vary, but in all cases, the number is huge, reaching even up to 16% in women between the ages of 18 and 64.

And not only that, vulvodynia is completely non-discriminatory. It affects women and girls of all ages, ethnicities, backgrounds, etc.

To set the record straight (as we’ve all heard a lot of terrifying accusations) and make the case clear (so we never again doubt this topic), it’s useful to mention what vulvodynia is not.