Vulvodynia in Fibromyalgia & Chronic Fatigue Syndrome

Vulvodynia is common in people with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS). It's a chronic pain condition that affects the vulva, which is the external portion of the female genitalia.

Vulvodynia can have a major impact on your life. While a lot of us with FMS and ME/CFS deal with, it is not a symptom—it's a separate condition that needs to be diagnosed and treated on its own. Any source of pain has the potential to make your FMS and ME/CFS symptoms more severe, which makes proper treatment especially important.

The pain or discomfort of vulvodynia doesn't come from any obvious source. The tissues appear healthy, there's no infection, and there's no injury to blame it on. However, that doesn't mean it's not "real." How do you know it's real? Because you can feel it. Many women don't describe their discomfort as pain but as itching, burning, stinging, irritation, stabbing, and/or rawness.

Vulvodynia Symptoms

Symptoms of vulvodynia can range from mild discomfort to severe and debilitating pain. It may be only in one area or it may move around. It may be sharp or diffuse, and it may come and go.

Symptoms include:

• Burning or stinging
• Rawness
• Itching
• Throbbing
• Overall soreness

Vulvodynia can cause pain during sexual intercourse, exercise, sitting, and other aspects of daily function. Medical science has identified several types of vulvodynia, and each one has a unique set of symptoms. 

Vulvodynia Causes

We don't yet know what causes this condition, but healthcare providers believe certain factors may contribute to its development, including a history of vaginal infections, past injury, hormonal changes, skin allergies or hypersensitivity. However, these factors aren't necessary for developing this condition.

Vulvodynia is not believed to be a sign of something more serious, such as cancer, and it is not a sexually transmitted disease.

Vulvodynia Diagnosis

The first step toward getting a diagnosis of vulvodynia is telling your healthcare provider what you're experiencing. That may be uncomfortable for you, but it's important to have that conversation so you can start down the path toward feeling better.

Before diagnosing vulvodynia, your healthcare provider will likely rule out other potential causes of your symptoms, such as skin conditions, bacterial or yeast infection, and other medical conditions.

Treatment and Management

A range of treatments is available to help you combat the symptoms of vulvodynia. They include:

• Medications: Tricyclic antidepressants and anticonvulsants may help alleviate your pain. (They don't mean that you are depressed or that it's "all in your head.") Antihistamines (allergy drugs) may help with itching.
• Topical creams: Cortisone or estrogen creams are sometimes effective.
• Myofascial release: This technique can alleviate pain in the pelvic muscles, which may contribute to vulvodynia.

Antidepressants and anticonvulsants are common treatments for FMS and ME/CFS as well. Your healthcare provider can help you find the drug(s) that best fit your conditions. If you're seeing multiple practitoners, make sure each one knows what medications you are taking.

You may be able to manage symptoms by making a few changes in your daily routine, such as:

• Keeping soaps and other hygiene projects away from the vulva
• Wearing loose-fitting underwear (Pain from clothing is a common problem for people with FMS.)

Vulvodynia in FMS & ME/CFS

Researchers don't know exactly why vulvodynia is common in FMS and ME/CFS. However, a prominent theory is that they all share a common underlying mechanism—central sensitization.

In central sensitization, the central nervous system (brain and spinal cord) become hypersensitive to unpleasant stimuli. That can include pressure, noise, smells, and chemicals. Sometimes, it involves the skin as well.

A Word From Verywell

Women with vulvodynia can struggle with more than pain. This condition may make you feel isolated, especially if problems with sex have an impact on your relationships. Embarrassment may keep you from talking about what you're going through, which could further isolate you from other people.

You may find that some people don't believe in your vulvodynia pain, which can make you feel invalidated. That can be especially painful if it comes from your sexual partner, who may feel rejected when you avoid sex. Open communication may help you resolve hurt feelings in both of you. You may want to consider couple's counseling as well.

A 2012 study of vulvodynia and comorbid conditions showed that feelings of invalidation were worst in women who also had ME/CFS. That's not surprising since ME/CFS is poorly understood and often not taken seriously.

Like any chronic illness, vulvodynia can lead to depression. If you believe you could be depressed, talk to your healthcare provider about the treatment options that are available to you.