The “disabling” condition causes chronic pain in the vulva, which can make everyday movement, sex and even inserting tampons agonising.
One 24-year-old who was diagnosed with the condition described the pain, which could last for minutes or hours at a time, as similar to “getting pins and needles around your vagina”. Needless to say, sex was impossible for her.
There are no official statistics on the number of women living with vulvodynia, however it’s estimated that many are avoiding seeking help for the problem, resulting in their lives being dictated by pain.
What is it?
The vulva is the term for the female external genitals including the pubic mound, the vaginal opening, the clitoris, the labia minora (inner lips), the labia majora (outer lips), the urethra and the skin between these parts.
“Vulvodynia is persistent, unexplained pain in the vulva, which can affect women of all ages,” Aly Dilks, clinical director at The Women’s Health Clinic tells HuffPost UK.
The condition can be “excruciatingly painful during intercourse”, according to Dr Webberely, which can result in women shying away from sexual contact completely.
Some examples of the pain felt by people with vulvodynia include:
:: a burning, stinging or sore sensation
:: pain triggered by touch, such as during sex or when inserting a tampon
:: pain which is constantly in the background and can be worse when sitting
:: pain which is limited to part of the vulva, such as the opening of the vagina
:: more widespread pain which can sometimes spread to the buttocks and inner thighs.
What causes it?
“We don’t know why it happens and often examining the area either with the naked eye, or under the microscope after a biopsy, doesn’t really show anything,” says Dr Webberley.
“However it is a very real condition and can be disabling for sufferers.”
For vulvodynia patients, different remedies can help in different cases. Some people might need to make lifestyle changes, while others might find anaesthetic creams, medications or therapies more helpful.
The bottom line is, the condition is unlikely to get better on its own which is why seeking treatment is so important.
Dilks recommends wearing 100% cotton underwear and loose-fitting skirts or trousers if you suffer with vulval pain. She also advises to avoid scented hygiene products such as feminine wipes, bubble bath and soap as they may aggravate symptoms. Instead, try using an emollient.
Applying cool gel packs to the vulva may also soothe the pain, she suggests.
It might seem natural to avoid sex if you’re experiencing vulvodynia, but Dilks advises against it.
“Try not to avoid sex or touching your vulva completely, as this may make your vulva more sensitive,” she says. “If sex is painful, try to find a position that’s more comfortable, or if penetration is painful, do other sexually intimate activities together until you’ve sought advice.”
“Some women find local anaesthetic creams helpful in numbing the area,” explains Dr Webberley. “Or sometimes a strong steroid cream applied regularly can help over a longer term,”
Dilks recommends applying lidocaine, an anaesthetic gel, to the vulva 10 minutes before sex to help make it more comfortable. She added that if the pain is constant, it’s worth applying the cream regularly throughout the day.
“A tip is to put some on a cotton makeup removal pad and put it onto the sore area so it’s held in place by your underwear,” she added, before pointing out it’s best to seek a doctor’s advice before trying it.
Dilks says that if the vulva is dry, vaginal lubricants and aqueous cream may help to soothe the area and moisturise it. But, again, it’s worth speaking to your pharmacist about these treatments before trying them.
Conventional painkillers such as paracetamol won’t usually relieve the pain of vulvodynia, but several medications available on prescription can help.
Webberley explains: “As the pain has many qualities in common with the nerve pain that can occur after a shingles outbreak, nerve-type drugs such as amitriptyline can be very effective.”
It’s worth noting that amitriptyline is an antidepressant, meaning there are possible side effects, some of which include tiredness, weight gain and a dry mouth.
“Gabapentin and pregabalin, which are from a group of drugs known as pain modulators, may also help although the side effects from these medications include dizziness, drowsiness and weight gain,” adds Dilks.
“Your doctor will probably start you on a low dose and gradually increase it until your pain subsides. You may need to take the medication for several months.”
A TENS machine (transcutaneous electronic nerve stimulation) may also be used to reduce the pain, by delivering a mild electrical current to the affected area.
According to the NHS, the electrical impulses can reduce the pain signals going to the spinal cord and brain, which may help relieve pain and relax muscles.
“They may also stimulate the production of endorphins, which are the body’s natural painkillers,” the site adds.
If medication isn’t an option, therapy certainly should be.
Cognitive behavioural therapy (CBT) helps patients manage their problems by changing how they think and act. Dilks explains: “It can often help women cope with the impact that vulvodynia has on their life.”
Meanwhile psychosexual counselling is helpful when pain is affecting intimacy. “This is a type of therapy that aims to address problems such as fear and anxiety about sex, and to restore a physical relationship with your partner,” she adds.
Self-help groups, forums and charities may also prove valuable resources for women.
Dr Webberley concludes: “Suffering in silence should not be an option.”