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Dysaesthetic Vulvodynia

What is it?

This condition is a cause of vulval burning and soreness. It usually affects women from the mid-forties onwards. Dysaesthetic (dis-as-thet-ic) comes from the medical term dysaesthesia – which means an altered nerve sensation and “vulvodynia” means vulval pain. Nerve fibres in the skin detect a number of sensations such as touch, pressure, temperature and pain. In dysaesthetic vulvodynia (DV) nerve fibres of the vulva are irritated or damaged and send abnormal signals back to the brain where you interpret them as pain. This can occur even when the painful area of skin involved in not touched. Another example of nerve-type or ‘neuropathic’ pain like DV is the pain some people experience following an attack of shingles. Once the rash of shingles has disappeared, the area of skin where the rash was can often be intensely painful and sore despite the skin appearing normal. This condition is called ‘post-herpetic neuralgia’.

There are many conditions that it is not! It is not infective, it is not related to cancer, and you will not pass it on to your partner.

How common is it?

Like any under-recognised condition, it is difficult to say exactly how common it really is.

What causes it?

In the majority of cases the precise cause of the nerve damage or irritation remains unknown. For a minority of women with DV, back problems E.G. slipped disc, can cause spinal nerve compression and cause referred pain to the vulval area.

What are the symptoms?

The pain may be burning or aching in nature. It can vary from a mild discomfort to severe, constant pain that can prevent you from sitting down comfortably. It may be continuous and can interfere with sleep. You can have good days and bad days. Itching is not usually a feature of the condition. The pain in DV is not always restricted to the vulva, and some women get pain elsewhere. This can be around the inside of the thighs, upper legs and even around the back passage and the urethra (where you pass urine). Some women also have pain when they empty their bowels. DV can affect your sex life, and you may have pain during foreplay and on penetration.

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 your doctor cannot see anything does not mean that nothing is wrong.

Making the diagnosis

Women referred to our vulval clinics have often seen many doctors regarding their condition. Your problem may remain undiagnosed, as there is nothing abnormal to see. Alternatively, your family doctor may regard your problem as ‘thrush’. Unfortunately many of the treatments for thrush e.g Canestan cream, can aggravate the problem. Dysaethetic vulvodynia is usually diagnosed by a specialist who will rule out infections and other skin conditions that may cause similar symptoms.

How is it treated?

Pain from nerve fibres, is best treated with drugs that alter the way that the nerve fibres send there impulses to the spinal cord and give the sensation of pain. One of the effective treatments for DV is the antidepressant amitriptyline. We use much lower doses for DV than depression. This drug alters the way the nerve fibres transmit the sensation of pain. It is not used because other doctors think it’s all in your mind! The treatment is in tablet form. Initially, your doctor might start you on a low dose (e.g. 20mg/day) and gradually increase the dosage (50-100mg/day). The response to the treatment is not overnight, and is often necessary to continue with treatment for 3-6 months. You should gain some benefit from the treatment after a few weeks. The commonest side effect is 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 such as at teatime. Constipation, having a dry mouth and occasional blurred vision are other temporary complaints. The other side effects should only be temporary, and should stop after a week or so on treatment. Another group of drugs, anticonvulsants, are used as treatment for other chronic pain conditions and may be used for vulval pain. You should tell your doctor if you are pregnant or have suffered liver and heart problems prior to treatment. Remember that treatment is only for a few months and not forever.

Treatments you can buy without prescription

Oatmeal 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. Some women found Aloe Vera gel to be helpful.

Indian teabags have been used to calm burning sensations that can accompany DV. They contain tannic acid, which acts as a local anaesthetic. The teabags can be placed in the bath or warm teabags can be placed on the vulval area at night.

Aqueous cream is a very bland plain emollient (soothing cream) that is usually used for treating dried cracked skin. It is perfume free and is therefor less likely to irritate the skin. Many women gain benefit from the use of this as it soothes and rehydrates the skin. Some women keep the cream in the fridge as this help even further. It can be used indefinitely and as frequently as you like. It is available without prescription.

Important things to remember about vulvodynia

  • vulvodynia is not generally associated with malignancy
  • Despite the fact vulvodynia is unknown in many cases, we know it is NOT a sexually transmitted disease and is not contagious to your partner
  • Vulvodynia is not due to poor hygiene. Strong soaps and detergents can make things worse. Use gentle soaps or none at all. Dry area with hairdryer on a cool setting
  • Improvements often take weeks to months.
  • We can treat pain in a variety of ways.
  • It is quite acceptable to seek information on your own. The more you know about this disease, the more control you have over your situation.
  • Sometimes patients get depressed if treatments fail. Remember this as you work through this problem.

Support groups and other resources

The vulval pain society (VPS) provides women with information on vulvodynia and other vulval disorders.
Vulval Pain Society
PO Box 514
Slough
Berks
SL1 2BP
UK

The vulval pain society

http://www.vul-pain.dircon.co.uk

National lichen sclerosus support group:

http://www.hiway.co.uk/lichensclerosus/

Interstitial cystitis support group of the united kingdom:

http://www.interstitialcystitis.co.uk/

National vulvodynia association:

http://www.nva.org/

vulvar pain foundation:

http://vulvarpainfoundation.org/

Vulvodynia.com:

http://vulvodynia.com/

Interstitial cystitis association:

http://www.ichelp.com/

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