Imagine not being able to put on your favorite jeans or even a pair of underwear because it hurts too much, or feeling like your most sensitive areas are on fire just from walking across the room.
These are common experiences for women with vulvodynia, unexplained pain in the vulva that lasts for at least three months.
As many as 16 percent of women in the U.S. will suffer from vulvodynia in their lifetime, but many don’t raise the issue with their healthcare provider. Those who do haven’t always received an accurate or timely diagnosis.
“Vulvodynia can be an isolating experience,” says UNC Health family medicine physician Debbie Phipps, MD. “There can be shame about it, and it can be hard to speak up about the symptoms or have repeated visits to get the diagnosis. But the experience is real, and I want people to know they’re not alone in this.”
Here’s what you need to know about vulvodynia.
How Vulvodynia Feels
Vulvodynia only has one symptom—vulvar pain—but the location and experience of the pain can vary.
You may have pain at one place in the vulva, or localized vulvodynia. Common spots for this include the vulvar vestibule, or the tissue that surrounds the vaginal opening, and the clitoris. You can also have generalized vulvodynia, meaning that all areas of the vulva are painful. The pain may feel like it extends into the vagina.
Pain may come and go, sometimes triggered by touch or pressure to the area, or it may be constant. The sensation tends to involve burning, rawness or knife-like sharpness, rather than itchiness.
“People describe a burning sensation on their vulva, with some saying it can feel like a sunburn,” Dr. Phipps says. “They may notice it with sex or because they feel their skin is affected with tight clothing or sitting.”
The vulva won’t typically look any different, despite the pain.
“It has a really profound effect on daily life and so many things that we take for granted,” Dr. Phipps says. “It affects the clothing you wear. You can’t use tampons. Sexual intimacy is significantly affected. You can’t exercise. Sitting in a chair all day is not possible. You have heightened awareness about this body part that others just don’t have.”
Potential Causes of Vulvodynia
When you feel any kind of pain, it’s because nerves are sending signals to your brain that something is wrong—perhaps there’s an infection or injury. But with ongoing chronic pain, it’s not clear why the nerve signals are sending these messages.
That’s true for vulvodynia as well. While there are theories for why some people experience it, definitive causes are unknown.
“Some might experience vulvodynia after repeated infections,” such as urinary tract or vaginal infections, Dr. Phipps says. “The nerves are meant to tell the brain that something is not right when there is that infection, but sometimes they don’t turn that message off.”
Hormones may play a role.
“It can happen around your first period or at menopause, or if you start oral birth control pills, all of which are big hormonal shifts,” Dr. Phipps says. “The pain can sometimes get better during pregnancy, which is another big hormonal change.”
A traumatic event, such as a sexual assault, can be a risk factor, but many patients experience vulvodynia without any known risk factor or past infection.
Diagnosing Vulvodynia
Vulvodynia isn’t diagnosed until you’ve experienced vulvar pain for three months, but you don’t have to wait that long to see your healthcare provider.
“I encourage you to be seen as soon as you can for pain,” Dr. Phipps says. “There’s this idea that some pain is normal—that sex is just painful, for example—but it’s not normal to have that pain, and we can help.”
Your provider will start by ruling out possible bacterial or yeast infections and looking for skin infections that affect the genitals, such as lichen sclerosus. Some people get relief when they stop using a harsh clothing detergent or feminine hygiene washes and wipes.
“Wash the vulva and vagina with water only,” Dr. Phipps says. “There’s a big beauty industry pushing products that are irritating to the skin, and once you stop using those irritants, you can feel better.”
If pain continues, your provider will perform a cotton swab test, where they apply pressure to various spots of the vulva to check your pain response; this can help determine if you have localized or generalized vulvodynia, and which parts of the vulva are affected.
They will also check the muscles of your pelvic floor, which can be done using a gloved finger.
“When there’s any area of pain in the body, the muscles tense, which is our body’s way of protecting us,” Dr. Phipps says. “The pelvic floor acts the same way, so if you’re having repeated pain in that area, the muscles might be repeatedly tensing and becoming tender and sore.”
This repeated action can add to the sensation of everything in your pelvic region feeling painful, and your nerves and your muscles could be stuck in a loop of responding to each other.
If you’re comfortable with it, your provider may recommend a pelvic exam to check for internal issues, but Dr. Phipps says it’s not necessary to make a diagnosis of vulvodynia, because most of the pain is felt externally.
For some people with vulvodynia, a pelvic exam is just not possible. If fears about a pelvic exam have prevented you from seeking care, talk to your provider about your concerns. If your provider doesn’t take your pain seriously, find another, Dr. Phipps says.
Treatment Options for Vulvodynia
There are options for both short-term and long-term relief of vulvar pain.
“If you’re having a flare-up or a painful day, a topical cream that numbs the area can offer short-term relief,” Dr. Phipps says. Your provider may prescribe a cream with ingredients such as lidocaine, estrogen and gabapentin that can numb the area without irritating the skin. Briefly applying an ice pack can also help.
Topical options may be considered if you’re having pain with intercourse; this can be especially important as you age and experience the hormonal shifts of menopause.
“We want to think about estrogen status if you’re postmenopausal,” Dr. Phills says. “Using topical estrogen, a non-estrogen moisturizer or a lubricant can help with sexual health and intimacy.”
Oral medications take longer than creams to have an effect—about two weeks—but can provide long-term relief. Some antidepressants and antiseizure medications are used, not because you’re depressed or having seizures, but because these medications have been shown to quiet the nerves that are sending inappropriate messages of pain to the brain.
If tense muscles in the pelvic floor are adding to your pain, pelvic floor physical therapy and nerve block injections to the pelvic floor can help to retrain and relax those muscles.
Surgery to remove vulvar tissue used to be a common first-line treatment for localized vulvodynia, Dr. Phipps says, but is now only considered when all other options have failed and is less frequently needed.
“When you finally get this diagnosis at three months, you have been dealing with everyday pain for a while,” Dr. Phipps says. “Most people feel better with these other treatment options. They can wear the clothes they want, have sex without pain and go about their day without feeling this way.”
If you are experiencing pain, talk to your doctor. If you need a doctor, find one near you.