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Vulvodynia and vestibulodynia

VULVODYNIA AND VESTIBULODYNIA

What are the aims of this leaflet?

This leaflet has been written to help you understand more about vulvodynia. It tells you what it is, what causes it, what can be done about it, and where you can find out more about it.

What are vulvodynia and vestibulodynia?

Vulvodynia means ongoing pain in the vulva (the female genital area) when there is nothing abnormal to see and no known cause for the pain.

Vestibulodynia is a term used for pain arising at the entrance of the vagina, in the area known as the vestibule (the area of the openings to the vagina and the urethra), when any pressure, be it touch or friction, is applied. It is also called localised vulvodynia.

Vulvodynia, whether it is generalised or localised, may be described as provoked (caused by touch) or spontaneous (occurring without touch as a trigger).

Many conditions affecting the vulva can be painful (e.g. infections such as thrush or herpes, as well as skin diseases such as eczema). In vulvodynia, pain is felt in the vulva when there is no obvious visible cause for it and other diagnoses have been ruled out by examination and investigation.

What causes vulvodynia?

The precise cause is unknown. The nerve endings in the skin of the vulva appear to become over-sensitive and send abnormal signals which are felt as a sensation of pain. Stress can make it worse. It is thought to affect about 15 in 100 women. It is not contagious or related to hygiene or hygiene products. Vulvodynia is one type of ‘complex regional pain syndrome’, others including migraine and fibromyalgia.

It may be primary (with no known cause) or secondary (following another condition, usually one in which there is inflammation in the vulva, such as that from thrush).

Is vulvodynia hereditary?

No.

What are the symptoms of vulvodynia?

Pain occurs in the vulva, and occasionally involves the buttocks or even the inner thighs. It is often felt as a burning, stinging or raw discomfort and may be constant or intermittent. Symptoms may occur only in a small area or involve the entire vulva. The pain can occur spontaneously or when the vulva is touched. The ongoing pain can cause significant distress and anxiety as well as affecting sexual relationships.

What does vulvodynia look like?

The skin of the vulva looks normal. This is important as other skin problems, such as infections, can cause the vulva to look abnormal (i.e. inflamed, very red, etc) as well as feel sore.

How will vulvodynia be diagnosed?

Your doctor will make the diagnosis by listening to your description of the problem and then examining you to exclude other causes of pain in the area. Gentle touch with a cotton bud near the entrance to the vagina can trigger discomfort in this condition. Taking swabs to look for infection or a biopsy (removal of a small sample of skin under a local anaesthetic to examine under the microscope) may occasionally be needed to rule out other causes, but there is no specific test to make the diagnosis.

Can vulvodynia be cured?

There is no simple cure, but most patients will be helped by one or more of a variety of treatments, to the point at which it is no longer a problem.

How can vulvodynia be treated?

Various treatments can be tried. Some of them may suit some women better than others, so it is worth trying different things to see which will help you. The following are sensible lines of treatment:

  • Avoid soap, bubble baths, shower gels, shampoos, special wipes and deodorants in this area. Wash with a soap substitute, as this will keep your skin soft and provide a barrier against irritation. Greasy ointments are a good soap substitute, and can be bought over the counter from chemists and at supermarkets without a prescription. Use petroleum jelly to protect the area from chlorine when you are swimming.

  • A local anaesthetic ointment can be used to numb the area, reducing discomfort. Lidocaine cream and ointment can be bought without a prescription. This however should be purchased on doctor advice. It may sting a little when first applied, but this will settle. Those with mild symptoms can use it as and when it is required. Those with more severe symptoms can apply it more regularly. The ointment may also be applied 10 minutes before intercourse but must be wiped off fully if a condom is being used as it can interfere with its protective ability. Occasionally long term use of this ointment can cause allergy to lidocaine, but this is rare.

If these measures do not give you enough relief, then prescribed oral medication may be needed. Three types are commonly used:

  1. 1. Amitriptyline or Nortriptyline. These medicines were developed as anti-depressants but are now used for many pain problems (e.g. for migraine and post-shingles neuralgia).

  2. 2. Gabapentin. This is an anti-epileptic drug, which is also used for pain.

  3. 3. Pregabalin.  This is a drug similar to Gabapentin.

Other treatments include:

  • Pelvic floor exercise. The pelvic floor is a group of muscles which are in the shape of a sling between the legs. These muscles keep the pelvic organs (bladder, uterus, and rectum) in place. Patients with vulvodynia who have sex-related pain frequently have pelvic floor muscle dysfunction. Physiotherapy for the pelvic floor muscles can be helpful.

  • Capsaicin cream (related to chilli pepper) can help some women when applied to the vulval area.

  • Intralesional injections.  Intralesional (into the vulva or the vestibule) injections (of steroid or local anaesthetic) may be considered in patients with vulvodynia triggered by touch.

Self care (What can I do?)

This condition is not life threatening or contagious. Follow the guidelines given above, and find what works best for you. Look at the stresses in your life (e.g. from your job, family, money, or partner) and try to reduce them as far as possible. High levels of stress will increase pain.

Avoid tight clothing in the genital area.

If intercourse is painful this may have emotional and psychological effects on sexual relationships. It is important to understand this, and to communicate fully with your partner, discovering techniques and lubricants that are comfortable and suit you both.

Psychosexual counselling from an expert may help.

Referral by your doctor to a ‘Pain management clinic’ may also be helpful.

Most women find that a combined approach including several approaches is the most effective way of managing vulvodynia.

Where can I get more information?

Web links to detailed leaflets:

http://dermnetnz.org/site-age-specific/vulvodynia.html

http://dermnetnz.org/site-age-specific/vulvar-vestibulitis.html

Links to patient support groups:

British Society for the Study of Vulval Disease

Web: http://www.bssvd.org/

International Society for the Study of Vulvovaginal Disease

Web: www.issvd.org/

National Vulvodynia Association

Web: http://www.nva.org/

For details of source materials used please contact the Clinical Standards Unit (clinicalstandards@bad.org.uk).

This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: its contents, however, may occasionally differ from the advice given to you by your doctor.

This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel

BRITISH ASSOCIATION OF DERMATOLOGISTS

PATIENT INFORMATION LEAFLET

PRODUCED MAY 2006

UPDATED SEPTEMBER 2012, SEPTEMBER 2015

REVIEW DATE SEPTEMBER 2018

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