Vulvodynia

If you’ve ever experienced pain or burning in your vulva for more than three months at a time, and your doctor has been unable to diagnose your issue, it’s possible that you’re dealing with vulvodynia. 

Studies have found as many as 16% of women in the US suffer from vulvodynia at some point in their lifetimes. One comprehensive review found that vulvodynia has an estimated prevalence range of 10% to 28% in reproductive-aged women in the general population. As with many statistics, however, actual numbers are typically even higher than official figures. 

What is vulvodynia?

In short, vulvodynia is chronic vulvar pain without an identifiable cause. It is often located around the opening of the vagina. The pain, burning or irritation associated with vulvodynia can be so uncomfortable that sitting for long periods or having sex is not possible. The condition can last from months to years. 

Given that vulvodynia is, by definition, without identifiable cause, it’s unsurprising that the location, consistency, and severity of the pain vary significantly. While some experience pain in just one area of the vulva, others experience pain in multiple areas. And while the most commonly reported symptom is burning, descriptions of the pain vary widely. 

Vulvodynia may or may not occur in tandem with other similarly misunderstood conditions, and at times, they are referred to interchangeably. Vaginismus, for instance, is when the muscles of the vagina squeeze or spasm if something is entering it, which makes anything from the insertion of a tampon to penetrative sex painful, and vestibulodynia is chronic pain and discomfort (and sometimes redness and inflammation) which occurs around the vaginal opening, inside the inner lips of the vulva, in the area known as the vestibule. 

Symptoms of vulvodynia

Pain associated with vulvodynia can range from occasional to constant, and may occur only when the sensitive area is touched. Pain may be felt throughout the entire vulvar area, or localized to one particular area. While, for some, vulvar tissue appears slightly inflamed or swollen, it is more common for the vulva to look normal. 

Vulvodynia symptoms are most often characterized as:

- Burning

- Soreness

- Stinging

- Rawness

- Painful intercourse (dyspareunia)

- Throbbing

- Itching

What causes vulvodynia?

Doctors do not know what causes vulvodynia, and ongoing gendered biases both in the healthcare system and in medical research as a whole make definitive answers hard to come by. 

Researchers have thus far speculated that one or more of the following may cause, or contribute to, vulvodynia:

- Injury to or irritation of the nerves surrounding the vulvar region

- A history of vaginal infections

- Allergies

- Sensitivity to irritants in detergents, soaps, douches and panty liners

- Hormonal changes

- Muscle spasm or weakness in the pelvic floor

- Injury or trauma, including sexual abuse and childbirth

Vulvodynia and mental health

As vulvodynia can be a very painful and frustrating condition, many sufferers also find themselves coping with high levels of emotional distress. It is common to feel as though your relationship to sex and intimacy has been severed, and, in some, vulvodynia can actually cause a fear of having sex. For many, the condition can put a strain on relationships with romantic/sexual partners.

Other mental health complications may include anxiety, depression, problems sleeping, negative body image, and overall decreased quality of life.

It may be helpful to seek the support of a cognitive behavioral therapist to help you reduce stress and help you feel more in control.

How to get a diagnosis

Given the lack of understanding medical professionals have about conditions like vulvodynia, vaginismus, and vestibulodynia, receiving an official diagnosis can be challenging and may require perseverance and/or visits to more than one doctor. 

In order to diagnose vulvodynia, a doctor will likely ask you questions about your medical, sexual and surgical history to help them understand the location, nature and extent of your symptoms. They may also check gently for specific, localized areas of pain.

They may also perform a pelvic exam to rule out signs of infection or other potential causes of your symptoms. Even if there's no sign of infection, your doctor may still take a sample of cells from your vagina to rule out a persistent/recurrent yeast infection or bacterial vaginosis.

Vulvodynia treatment options

As the root cause(s) of vulvodynia are unknown, treatments are focused on symptom relief, and no one treatment works for everyone. Often, a specific combination of treatments works best, and finding the right combination for your case can be a lengthy process of trial and error. As well, it can take time for any given treatment to start working.

Treatment options include the following:

- Medication. Steroids, tricyclic antidepressants or anticonvulsants may help lessen chronic pain, and antihistamines may reduce itching, but especially taken in the longterm, many are known to have a range of side effects.

- Local anesthetics. Lidocaine ointment may provide temporary symptom relief. If you’re set on having intercourse rather than outercourse, doctors sometimes recommend applying lidocaine half an hour before penetration to reduce discomfort. However, the ointment may cause your partner temporary numbness after sexual contact.

- Nerve blocks. Those with longterm pain which is unresponsive to other treatments might consider nerve block injections. A local anesthetic and cortisone (a steroid) is injected into the muscle in the region of the dysfunctioning nerve, immediately dulling the pain. Injections are usually administered one week apart for several weeks.

- Surgery. In some cases of localized vulvodynia or vestibulodynia, surgery to remove the affected skin and tissue may relieve pain. Surgery is by nature very invasive, and should be considered a last resort. Overall success rates for surgical procedures range from 60-96%. 

If any of the above treatments have failed to address your symptoms, or you prefer more natural and holistic approaches, you might consider the following:

- Pelvic floor therapy. Many women with vulvodynia have tension, weakness, or instability in the muscles of the pelvic floor, which supports the uterus, bladder and bowel. A qualified pelvic floor therapist can give you exercises to relax those muscles and help relieve vulvodynia pain, sometimes miraculously.

- Vaginal dilator kits. Your pelvic floor therapist may introduce you to vaginal dilators and how to use them, but dilator kits can also be purchased independently. A dilator is a phallus-shaped device (much like a dildo) used to gently stretch your vagina, and kits usually offer a range of different sizes, from small to large, so you can progress at your own pace. 

- Biofeedback therapy. Using electrical sensors, biofeedback therapy can reduce pain by training your pelvic muscles to relax. Some pelvic floor therapists may integrate this method into your overall treatment plan.

While vulvodynia is not an easy condition to diagnose, treat, or cope with more generally, seeking the advice of a qualified doctor or pelvic floor therapist is often the first step toward gaining a better understanding of the root causes of your pain, which invariably leads to quicker relief.