Vulvodynia affects 1 in 6 women. What is it, and who is most likely to experience it?

Kate experienced vulva pain for many years in her 20s before receiving a diagnosis.

“It was all very intertwined with when I got an STI,” says the 40-year-old from Meanjin/Brisbane, who asked we don’t use her real name.

“I was constantly talking about the pain I was in, and no medical practitioner was able to give me any information, it was just swept under the rug, I felt.

“And because it’s shrouded in shame, and the situation I was in with the STI, I just assumed this was a cross to bear.”

Years later when Kate was seeing a specialist about a cervical screening result, she was diagnosed with vulvodynia.

“The relief I felt from just having a diagnosis was so incredible.”

About 16 per cent of women will have vulva pain that lasts longer than three months, and many of them “just put up with it,” explains Jane Chalmers, a senior lecturer in pain sciences at the University of South Australia.

She says that comes down to the taboo around sexual health and a “long history” of women’s pain being dismissed.

Although sometimes a lengthy process to diagnose, help for vulvodynia is available.

We discuss what exactly vulvodynia is, how it can impact your life, and where to seek treatment.

What is vulvodynia?

Vulvodynia is an umbrella term for persistent pain in the vulva regions that occurs where there is no identifiable pathology happening, Dr Chalmers says.

“There is no infection, no virus, no bacteria, no trauma, no skin problems. It is, [for] all intents and purposes, a healthy vulva, but that person experiences pain.

“If someone had dermatitis or something, we could easily classify that as vulva pain.

“But vulvodynia … you describe a clinical sign that talks about pain in response to something that shouldn’t provoke pain — the classic one is touch.”

Vulvodynia can be localized or generalized, for example, pain that occurs in specific areas such as the clitoris, versus pain that occurs all over the vulva.

People with vulvodynia can experience a painful, raw, or burning sensation.

Some women describe the pain as stinging, tearing, stabbing, throbbing, or itching.

The pain can be provoked or unprovoked vulvodynia, Dr Chalmers says.

“Provoked is where it hurts when the vulva is provoked, or touched, like some kind of pressure – some women even talk about temperature changes like when they jump in the shower.

“Unprovoked is pain that is there all the time, or they can’t identify a trigger.”

Dr Chalmers says we don’t know what causes vulvodynia.

“For some people it happens after a series of infections with thrush, that’s a really common pattern.

“It’s also common in people with vaginismus, which kind of gives us a clue that there is something going on with vulvodynia that relates to the immune system.”

She says it’s “really complex” but there is also a trend that often people who get vulvodynia are “on the side” of being more anxious, depressed and likely to lead stressful lives.

How vulvodynia can impact your life

Pav Nanayakkara, a gynaecologist at Jean Hailes for Women’s Health, says sexual function is commonly impacted by vulvodynia.

“It can make any form of sexual intimacy quite uncomfortable, and in some cases, traumatic.

Cervical screening and STI testing may also be painful and damaging, which has health implications, Dr Nanayakkara says.

Beth (not her real name) from Naarm/Melbourne says she started experiencing vulva pain in her late 30s, which escalated in her 40s.

“I was with a new partner and the first time we had sex, it was super painful,” the 52-year-old says.

She had an STI screening to investigate itching that occurred afterwards, and after several specialist appointments, she was diagnosed with vulvodynia.

“It really hasn’t gotten any better and I’ve seen a couple of different doctors and tried a few different things, so now I just live with it.

“I’m single — and not dating, or wanting to date — so sex isn’t an issue.

“But I know when I was with my previous partner … I avoided intercourse.”

Beth says she finds cervical screening tests painful, having to use local anesthetic to make it manageable.

Basic everyday activities such as sitting down or wearing underwear can also be painful for people with the condition, Dr Chalmers says.

“Lots of women will talk about wearing only skirts and no underwear so there is nothing touching their vulva, which is really difficult if someone is menstruating.”

She says women may avoid activities such as physical activity and sports.

“More widely, [as for] anyone living with persistent pain, it can impact your mood, energy levels, sleep, relationships, school, work — it starts as a local problem and becomes global quickly.”

Seeking treatment for vulvodynia

In about 40 per cent of people, vulvodynia will get better on its own.

But diagnosing vulvodynia is a process of elimination.

“Vulvodynia, by its definition, is a diagnosis of exclusion, because it’s pain that can’t be explained,” Dr Chalmers says.

Dr Nanayakkara says the taboo associated with sexual health means people can feel “quite alone in that diagnosis.”

Patients may also find it difficult to explain the pain they are experiencing.

Treating vulvodynia often requires multidisciplinary care, our experts say. Medical professionals that may be able to help include a GP, gynaecologist, dermatologist, pelvic floor physiotherapist, psychologist, pain specialist, sexual health physician, and sex therapist.

“Speak to your GP first, preferably one with an interest in women’s health,” Dr Nanayakkara says.

“They will recognize this is a complex, chronic medical condition, that won’t be fixed in one appointment.”

Your GP will act as the center of your care team and be able to write referrals to other necessary experts, Dr Chalmers says.

Beth says with the help of medical professionals, she has found ways to manage her vulvodynia.

“Like most chronic pain conditions, this isn’t easy to treat and you can get frustrated when it doesn’t get better,” she says.

“It might be that you have to find ways to manage it rather than being ‘cured’ of it.”