Vulvodynia: symptoms, causes, diagnosis and treatment

The NHS describes the pain as burning, throbbing, stabbing or soreness. It can affect all or part of the vulva, be constant or come and go, and start by itself or when the area is touched, for example when inserting a tampon or during sex. Some people also notice pain in the inner thighs, around the anus, or around the urethra, and for some it begins when they open their bowels.

The dermatology leaflet uses slightly different images: burning, stinging, or a raw, sandpaper-like discomfort that fluctuates in intensity. Because the pain can interfere with sex, sleep and concentration, it often brings embarrassment, lower desire and difficulty talking to a partner, and the leaflet notes that the ongoing pain can cause significant distress and anxiety.

• Pain that does not settle or keeps returning for more than a few weeks.

• Pain when a tampon is inserted or when trying to have sex.

• Burning or stinging that is not accompanied by a visible rash, ulcer or discharge change.

• Soreness that spreads to the thighs or around the back passage.

The NHS says the main aim is to manage pain, and that treatment is often shared between a gynaecologist, a physiotherapist, a psychologist and a pain specialist. Options it lists include numbing creams, tablets for nerve pain, pelvic floor exercises, vaginal trainers shaped like tampons, and psychological therapies such as CBT or psychosexual therapy. Surgery to remove the painful part of the vulva is mentioned as an occasional option when other treatments have not worked. The NHS stresses that no single treatment works for everyone and you may need to try several.

The dermatology leaflet gives more detail on medicines. It names amitriptyline or nortriptyline, which were developed as antidepressants but are used for various pain problems, and gabapentin, an anti-epileptic also used for pain, as three commonly used off-licence choices alongside injections of steroid or local anaesthetic into the painful area. It explains that off-licence use means a doctor prescribing a medicine for a condition other than the one on its licence, which is legal and common in pain care. Nerve blocks or botulinum toxin injections are described as helpful only in very specific cases.

Lidocaine 5% ointment, a local anaesthetic, can be bought without a prescription, but the leaflet says it should be bought on a doctor's advice. It may sting when first applied, can be used 10 minutes before intercourse, and must be wiped off fully if a latex condom is used because it can interfere with the condom's protection.

The NHS defines vulvodynia as pain in the vulva, the area around the outside of the vagina, that lasts at least three months and does not have a specific cause. The label is applied once other explanations have been looked for and not found, so it describes a pattern of symptoms rather than a single disease.

Doctors use a few words that can be confusing in a letter. Vestibulodynia, also called localised vulvodynia, describes pain arising at the entrance to the vagina, the area known as the vestibule, when pressure or friction is applied. Generalised vulvodynia can involve a wider area, including skin towards the inner thighs and buttocks. Whether it is localised or generalised, pain may be provoked, meaning touch sets it off, or spontaneous, meaning it appears without a trigger.

The British Association of Dermatologists adds that vulvodynia is not hereditary, is not contagious and is not caused by hygiene habits. That matters because many people with vulval pain have spent months blaming themselves or trying to wash differently.

The exact cause is not known. The NHS lists damage, irritation or over-sensitivity of the nerves in the vulva, previous vaginal infections, changes in hormone levels such as oestrogen, and weak pelvic floor muscles as possible contributors. The dermatology leaflet describes the nerve endings in vulval skin as becoming hypersensitive, and groups vulvodynia with other chronic pain conditions, naming migraine and fibromyalgia as examples. It also says stress is known to worsen the condition.

Some cases follow another problem. The leaflet describes secondary vulvodynia as arising after inflammation of the vulva, such as repeated thrush or heavy use of anti-thrush creams and pessaries. That is one reason a clinician will usually ask which treatments you have already tried before suggesting more.

There is no blood test or scan that confirms vulvodynia. A GP will ask about your symptoms, skin conditions, past infections and whether sex is painful, and may ask to examine the vulva and vagina. The NHS describes a gentle cotton-bud test, in which a cotton bud is touched lightly over different areas to map which are painful, and a swab to rule out infections. You can ask to see a female GP and to have someone else in the room.

The British Association of Dermatologists adds that a small skin biopsy is occasionally needed to rule out other skin conditions, but that the diagnosis itself rests on your description and an examination that excludes other causes. If the cause cannot be found, you may be referred to a specialist service for pain management.

The British Association of Dermatologists says there is no simple cure, but the condition can improve with one or more of a variety of treatments, so that it may no longer be a problem. It says it is very common for the condition to have periods of flaring up as well as dying down, and that overall it will improve spontaneously in around 50% of women.

By definition, the NHS uses a minimum of 3 months of pain to describe vulvodynia. Most women find that a combined approach including several techniques is the most effective way of managing it, according to the British Association of Dermatologists, so it is worth trying different things and staying in touch with your GP or specialist.

The NHS lists practical measures that reduce irritation. They will not remove nerve-related pain, but they take avoidable aggravation out of the picture while treatment is organised.

• Wear loose cotton underwear and consider pads instead of tampons during your period.

• Try different positions for sex and use lubricant.

• Avoid sitting in the same position for long periods and avoid hot baths; keep water cool or lukewarm.

• Do not douche or clean inside the vagina, and avoid scented soaps and deodorants in or around the vulva. An emollient can be used instead; a GP or pharmacist can advise.

• Make room for relaxation such as yoga or mindfulness, since stress is linked with worse symptoms.

The NHS says to see a GP if you have pain or discomfort in your vulva that does not go away or keeps coming back, you find it difficult inserting a tampon because of the pain, or you find having sex difficult because you feel pain such as burning or stinging. You can ask to see a female GP and for someone else to be with you in the room.

The NHS notes that other conditions can cause genital pain, including vaginitis, vaginismus and some sexually transmitted infections (STIs), so it is worth having these checked rather than assuming a cause.

The British Association of Dermatologists says that many conditions affecting the vulva can be painful, including infections such as thrush or genital herpes and skin conditions such as eczema. Unlike these, vulvodynia is diagnosed only when nothing abnormal can be seen and other diagnoses have been ruled out by examination and investigation.

On the NHS, the NHS says the GP will ask about your symptoms, may examine you and may take a swab, and if the cause cannot be found you may be referred to a specialist for help managing the pain. The British Association of Dermatologists says referral to a pain management clinic or a dedicated vulval dermatology clinic may also be helpful, along with psychosexual counselling and pelvic floor physiotherapy.

Because several professionals are often involved, it is worth asking any private service how it will coordinate physiotherapy and psychological support rather than offering a single consultation. The British Association of Dermatologists notes that some medicines are used off-licence, so ask who will prescribe and review them.