Vulvodynia is a frustrating and confusing condition that causes constant, unexplained pain in your vulva – the outer folds of skin around your vagina. If you have burning, stinging, soreness or pain and no other reason can be found for it, vulvodynia could be the issue you need to tackle.
Having vulvodynia can feel lonely, and create anxiety and low mood – with emotional pain alongside physical pain. Some women say they’re embarrassed about it and it can have a huge effect on self-esteem, daily routines and your love life. But there is lots of help and support available.
“With the right diagnosis, care and treatment you can help ease the pain and reclaim your health, wellbeing and sexual confidence,” says Dr Ann Nainan. “It might surprise you to know that vulvodynia can be managed with treatment, either from your doctor or a pharmacy, and through self-care.”
Read on to find out more about the condition and how to take control of your symptoms.
What does vulvodynia feel like?
Vulvodynia can affect people of all ages, but it’s more common in younger women aged between 18 and 25. Vulvodynia describes unexplained pain in your vulva, which many women describe as a soreness, burning or stinging. It is usually diagnosed when another cause can’t be found. As we’re all different, there are lots of different ways women experience it.
Where does the pain happen?
the main symptom is pain in or around the vulva and vagina that doesn’t go away or keeps coming back
it can occasionally be felt in the whole genital area, anus, buttocks or the inner thighs
for most women the pain affects a small area (called localised vulvodynia)
if the pain affects your whole vulva it’s called generalised vulvodynia
What does vulvodynia feel like?
What the pain feels like, what triggers it and how or where it happens is different for everyone.
How do women describe the pain?
- burning (this is the most commonly reported feeling)
- raw discomfort
This pain may be mild or severe; it may be constant or it may come and go. Some people have reported their pain as being like “acid being poured on my skin” and others as “constant knife-like pain”.
When does the pain come on?
pain can come and go – or you may have it all the time
pain can be triggered by touch (called provoked vulvodynia) or by inserting a tampon, having sex or even wearing fitted trousers
some people find their symptoms come on without a trigger – this is called unprovoked vulvodynia
Is it linked to other things?
Having vulvodynia has also been linked to other health problems. We don't know enough to say whether one causes the other but we know that if you have vulvodynia you're more likely to also have:
- irritable bowel syndrome (IBS)
What causes vulvodynia?
Although the exact causes of vulvodynia are unknown, it is sometimes linked to:
- damaged nerves – irritated or over-sensitive nerves in the vulva could be to blame for the pain. Research suggests that if you’re born with more nerve endings in the area between your vagina and the hole you pee from, you are more at risk of feeling pain from damaged nerve endings.
- surgery around the vulva area – scar tissue can form following surgery which can lead to pain when that area is stretched
- pregnancy and childbirth – if you already have vulvodynia it can sometimes get better, or worse, during pregnancy, it can also start for the first time during or after pregnancy. Repeated bouts of thrush can also happen in pregnancy and cause symptoms similar to vulvodynia, or make the pain worse as can irritation from creams you might need. But the good news is that there’s no evidence to suggest vulvodynia affects the health of your baby
- chronic vaginal – repeated thrush can be another trigger, as it causes inflammation in the vulva, which may lead to nerve damage and lead to vulvodynia
- sexual trauma – for some women, previous sexual trauma or childhood sexual abuse can be a cause of vulvodynia, and some evidence suggests it can be linked to PTSD
Vulvodynia treatment options
There isn’t one treatment option for vulvodynia, and addressing any underlying causes may help, so experiment and find what works best for you.
Finding emotional support
“Having a condition like vulvodynia can be hard to deal with emotionally. Don’t let feelings of embarrassment or shame stop you from getting the help you deserve. Getting support from loved ones or a group of women who also experience vulvodynia can help build up your confidence,” says Dr Adiele Hoffman.
Vulvodynia can create self-confidence issues and make you think twice about what clothes you wear and what activities you do. It can also affect the day to day routines other people take for granted like washing in the shower and your relationship with your partner, as it can make sex painful, and reduce your sex drive. All of this can lead to feelings of anxiety and depression.
If you've been affected by sexual trauma, including in childhood, and think this could be linked to your vulvodynia, know you're not alone. This may well be affecting you in other ways too – chronic tummy or pelvic pain, anxiety, depression and PTSD are all associated with sexual trauma. There are, and specialist counsellors that have a wealth of experience to help you.It's never too late to reach out and get support.
As well as asking your doctor or sexual health clinic for support, you might find it helpful to talk to other people with vulvodynia, to hear how they cope. The Vulval Pain Society has support groups across the UK and theoffers support in the US.
Self-care tips to help manage vulva pain
You can help yourself with these easy at-home, self-care treatments:
- pelvic floor exercises – as well as strengthening and conditioning your pelvic floor these simple exercises relax the muscles. It’s a first step to help desensitise the nerve endings in your vulva
- cold compresses/gel packs – wrapping a cold compress or a gel pack in a towel and holding it against your vulva can help with any itching or burning
- soaking in a cool or lukewarm bath can soothe irritation or burning
- breathable cotton underwear can reduce irritation
- try to avoid avoid friction including tight trousers
- use cotton tampons – blood from your period can irritate your vulva, as can sanitary pads, which can rub. Cotton is a fabric that won’t irritate your skin
- avoid activities that put pressure on your vulva, like cycling or horseriding
- use a soap substitute, emollient or just water to wash – scented soaps, bubble baths, bath oils and feminine wipes can irritate your vulva. Pat yourself dry with a soft towel, rather than rubbing
- bathe the vulva after having a wee using plain water
- use preservative-free emollient, like plain petroleum jelly, before swimming – it stops chlorine irritating your vulva
- use an unscented, unflavoured water-based lubricant before sex
Pharmacy treatments for vulvodynia include:
- gels such as Lidocaine numb the area, to ease discomfort. Use it during the day or, if you’re in a lot of pain, apply it overnight. It’s a good option if you experience pain during sex. You can apply it 20 minutes before or overnight. One small study did show some benefit – it found that 76% of women who applied lidocaine overnight (to the area between the vagina and urethra called the vestibule) for around 7 weeks or longer were able to take part in sex (compared to 36% before the treatment) and reported that they were in a lot less pain during sex. Remember, lidocaine must be wiped off completely before using a condom, as it can affect how well the condom works
- soap substitutes are emollients used for dry skin conditions like eczema. They can be used in place of soap as they make your skin feel less dry and irritated than normal soaps. Most can be used as a moisturiser for any dryness as well but certain types, like aqueous cream, should be washed off as it can irritate your skin
At the moment doctors don’t know enough aboutto advise them as a treatment for vulvodynia. A few reports have suggested may help some people with vulvodynia, and this is an area researchers are looking into, but it’s not currently recommended.
If you have vulvodynia, it’s important to, as increased stress can make your pain worse. Relaxation techniques can help you destress and, along with pelvic floor exercises, (see above) are great for relaxing your pelvic floor muscles, which can improve vulvodynia.
Relaxation techniques you could try include:
- breathing exercises
- gentle stretching
- listening to music
When to see a doctor
See your doctor or visit your local sexual health clinic if you have pain in your vulva that won’t go away, or keeps coming back. There could be an underlying cause of your pain that needs investigating. Your doctor can help you with a diagnosis, treatment options and referrals for specialist support.
How does a doctor diagnose vulvodynia?
Your doctor will ask about your medical history and symptoms you’ve been having. To prepare, you might find it useful to write down this information before your appointment and list any self care treatments you’ve already tried. You could also track symptoms with our.
The doctor will examine your vulva and vagina, and may also look at your vaginal discharge, to see if you have a skin disorder or infection. They might also ask that you have a blood test, to check your hormone levels, and perform a cotton swab test, where you’ll be asked which areas of your vulva are painful when pressed gently. Some people might find this embarrassing, which is completely normal. If you think this might be a stressful experience for you, try some relaxation techniques beforehand.
Getting a diagnosis can sometimes be frustrating and it may take a while for your doctor to rule out other causes of your pain.
What treatments might your doctor prescribe?
Treatments your doctor might prescribe include:
- – can help in treating vulvodynia, as they change the way that nerve fibres send pain signals round your body. They’re prescribed in lower doses than when used to treat . It may take three to six months for the treatment to work
- nerve painkillers – gabapentin and pregabalin can help with the pain associated with vulvodynia
- injections or steroids and local anaesthetic – you can target the areas of pain by injecting into a nearby nerve for temporary relief
- – this can help to relax your pelvic floor muscles (which are linked to vulva pain), help with how well you can move and improve your circulation. Research has shown some positive improvements in pain and satisfaction in sex when taking part in physiotherapy
- – CBT can be helpful for reducing the pain and stress linked to vulvodynia, as well as improving how you think about your relationship with your partner and your sex life
- psychosexual counselling – this is useful when the pain caused by vulvodynia is triggered by sex or is affecting intimacy with your partner
- surgery –- in rare cases, your doctor may suggest surgery.
You should also see a doctor if:
- you have a rash or blisters on your vulva
- you have unusual vaginal discharge and you’re not sure what’s causing it
- sex is painful
- it’s very bad, gets worse or is painful when you touch the area in or around your vulva
- it’s affecting your quality of life
- it’s affecting your relationship
See a doctor as soon as possible if:
- you have a very high temperature, or feel shivery
- you have trouble going to the toilet, including pain when you go
- you’re pregnant
- you have any bleeding after sex
If you think you could be at risk of a sexual infection, get a sexual health check up by going to a sexual health clinic or ordering a test online. Sexual health clinics can also be useful