Vulvodynia is the term used to describe the condition experienced by women who have the sensation of vulval burning and soreness in the absence of any obvious skin condition or infection. The sensation of burning and soreness of the vulva can be continuous (unprovoked vulvodynia), or on light touch, e.g. from sexual intercourse or tampon use (provoked vulvodynia). Women who have unprovoked vulvodynia were formerly known as having dysaesthetic (or dysesthetic) vulvodynia where pain was felt without touch. Vestibulodynia is the term replacing vestibulitis where pain is felt on light touch. A recent change in the terminology used to describe these conditions has made the description of women with vulvodynia more uniform amongst health professionals and patients. Many women have symptoms which overlap between both conditions.
Dysaesthetic vulvodynia and vestibulitis are now obsolete terms that you’ll hear less and less frequently as they are phased out.
What is it?
This condition is a cause of vulval burning and soreness, usually as a consequence of irritation or hypersensitivity of the nerve fibres in the vulval skin. The abnormal nerve fibre signals from the skin are felt as a sensation of pain by the woman. This type of pain can occur even when the area is not touched. Another example of nerve-type (neuropathic) pain like vulvodynia is the pain some people experience with an attack of shingles. Once the rash of shingles has disappeared the area of skin where the rash was can be intensely painful and sore despite the skin appearing normal. This condition is called post-herpetic neuralgia.
What are the symptoms?
The pain described by women with unprovoked vulvodynia is often of a burning, aching nature. The intensity of pain can vary from mild discomfort to a severe constant pain which can even prevent you from sitting down comfortably. The pain is usually continuous and can interfere with sleep. As with long-term pain from any cause you can have good days and bad days. Itching is not usually a feature of the condition. The pain in unprovoked vulvodynia is not always restricted to the vulval area (area of skin on the outside of the vagina), and some women get pain elsewhere. This can be around the inside of the thighs, upper legs and even around the anus (back passage) and urethra (where you pass urine). Some women also have pain when they empty their bowels. Unprovoked vulvodynia can have an effect on sexual activity and is associated with pain during foreplay and penetration.
In some women with unprovoked vulvodynia the burning sensation can be generalised over the whole genital area. Alternatively it can be localised to just the clitoris (clitorodynia) or just one side of the vulva (hemivulvodynia).
What is there to see on examination?
Usually there is nothing to see on examination as the problem lies with the nerve fibres themselves which are not visible to the skin. Just because Mr Chattopadhyay may not see anything does not mean that there is nothing physically present.
How is it treated?
Pain that originates from nerve fibres is best treated with drugs that alter the way in which the nerve fibres send their impulses to the spinal cord and give the sensation of pain. The most experience to date in treating vulvodynia has been with the tricyclic antidepressants. These can be prescribed by Mr Chattopadhyay in doses lower than are used to treat depression. The drugs are used because they alter the way in which the nerve fibres transmit the sensation of pain, not because Mr Chattopadhyay thinks it’s all in your mind! Some women do gain some benefit from different types of creams and lotions applied to the vulval area which do act as soothing agents, but it is generally best to avoid all creams unless they have been prescribed by Mr Chattopadhyay or your GP.
What is it NOT?
There are many conditions that it is not! It is not infectious, it is not related to cancer, and you will not pass it on to your partner. As stated before, some women do experience pain on the insides of the thighs and around the anus; however, this will not spread further.
How does it differ from vestibulodynia (formerly vestibulitis)?
Vulvodynia (unprovoked pain) Vestibulodynia (provoked pain)
Pain is burning and sore in nature
Itching not usually a problem
Can be generalised around the vulva or localised
Pain with light touch, e.g. tampon use or sexual intercourse
Usually no symptoms at other times
Can be generalised around the vulva or localised
What causes it?
For a minority of women with vulvodynia, back problems such as slipped discs and others can cause spinal nerve compression and cause referred pain to the vulval area. In the majority of cases, however, the precise cause of the nerve damage or irritation remains unknown. Vulvodynia is known as an idiopathic condition, i.e. a condition with no known cause.
Treatments available from Mr Chattopadhyay
Tricyclic antidepressant tablets, as mentioned above, are a standard treatment. The treatment is in tablet form, starting at a low dose and then increasing every few days until the pain subsides. The response to treatment does not happen overnight and may take several weeks. It is often necessary to continue with treatment for three to six months. Examples of tablets include amitriptyline, nortriptyline and dothiepin.
One of the major drawbacks for some women using this treatment are the side-effects; however, these usually settle within the first few weeks of treatment and are not usually exacerbated by increasing the dose. The most common effect is that of tiredness which affects many women. If this occurs, try taking the tablets before you go to bed. If this makes you sleepy in the morning and you have difficulty in getting out of bed, try taking the dosage slightly earlier, for example at teatime. Constipation, dry mouth and occasional blurred vision are other complaints whilst on treatment. If you are constipated try taking Senna or Fybogel which are weak bowel stimulants. You should let Mr Chattopadhyay know if you are pregnant or have suffered liver and heart problems prior to treatment. Remember that treatment is only for a limited time and not forever!
Psychosexual counselling from an expert may help. Referral by Mr Chattopadhyay 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.
Treatments you can buy without prescription
Vaginal lubricants can help during intercourse. These are like vaginal mucus and last longer than conventional lubricants. See also the paragraph below on emulsifying ointment.
Aqueous cream is a very bland plain cream which may be used instead of soap when washing. It is best used only as a soap substitute rather than as a leave-on cream: for more details, see this Drug Safety Update from the UK Government (https://www.gov.uk/drug-safety-update/aqueous-cream-may-cause-skin-irritation).
Many women gain benefit from washing with an emollient such as emulsifying ointment (available from pharmacies in 500 mg tubs). If you find the ointment too thick, thin it down with some boiling water. Emulsifying ointment or alternatively Epaderm cream both make good barrier creams for swimming and also good sexual lubricants.
For severe attacks of pain Aveeno (oatmeal) sitz baths are an alternative treatment available from most health shops without prescription. Place one sachet in the bath and bathe for 20 minutes. This can be repeated up to four times a day. Alternatively, Emulsiderm bath lotion may help, or Oilatum in the bath.
Acupuncture has been shown to benefit women with vulvodynia when the pain is continuous; however, it is important to have treatments which address the genital area.
Where can I get more information?
Web links to detailed leaflets:
Links to woman support groups: Vulval Pain Society Web: http://www.vulvalpainsociety.org/
British Society for the Study of Vulval Disease Web: http://www.bssvd.org/
International Society for the Study of Vulvovaginal Disease Web: http://www.issvd.org/
National Vulvodynia Association Web: http://www.nva.org/
For details of source materials used please contact the Clinical Standards Unit (firstname.lastname@example.org).