FABIA BRACKENBURY is 61 and has been living with lichen sclerosus since 1994. She writes about this sensitive subject in her capacity as founder of the Vulval Health Awareness Campaign and the National Lichen Sclerosus Support Group, and as an honorary member of the British Society for the Study of Vulval Disease.

Q: When is sexual health not sexual health? A: When it is vulval health.

The majority of conditions that affect the vulva are neither sexually transmitted nor infectious.

An enquiry to the Department of Health from the charity, Vulval Health Awareness Campaign, revealed that "sexual health" is defined as conditions that are caused by infection or that are sexually transmitted. A request to the Independent Advisory Group on Sexual Health for vulval conditions to be included was firmly put down as being "inappropriate".

So what about the thousands of women who suffer vulval disorders - where do they fit in?

Until the formation of the Vulval Health Awareness Campaign in 2000, there was no representation for vulval health as a specialist area - even though lichen sclerosus, lichen planus and extra-mammary Paget's disease are all skin conditions of unknown origin that put a woman at risk of developing vulval cancer.

Around a thousand women die of vulval cancer each year

Although it's promoted by the medical profession as an "old woman's cancer", vulval cancer has also claimed the lives of younger women in their thirties.

Women present late with advanced symptoms and are shocked to find that their genitals can be prone to cancer. "We have never heard of it," they say. "Why isn't there more awareness?"

Women need to be informed and valued at any age, but creating awareness of vulval health is extremely difficult. While the media are happy to talk about the clitoris in terms of pleasure, they shy away when faced with the truth about vulval cancer, vulvar intraepithelial neoplasia (VIN) and lichen sclerosus - all conditions through which the clitoris can be lost.

Not always 'non-infectious'

VIN, a pre-cancerous condition, is thought to be caused by the same virus responsible for cervical cancer (HPV) and therefore is an exception to the "non-infectious" category in vulval health.

While no official statistics are available, doctors nationwide are reporting an increase in cases of VIN at their clinics. One gynaecologist runs a special VIN clinic every week as a result of the increase in diagnosed cases of this condition at her clinic.

There is no national screening programme to detect vulval cancer or to warn women about VIN. Treatment involves mutilating surgery or topical treatments that burn, causing severe breakdown of the skin and raw soreness that patients describe as torturous agony. Patients have little or no support.

VIN is a condition that will certainly recur and there's a seven per cent risk of it becoming vulval cancer. However, many vulval health conditions start with either soreness or vulval itch and women will self-treat with over the counter products for thrush for months before asking for help from their GP. It's "social conditioning" regarding vulval itch that often delays correct diagnosis and treatment.

Dozens of conditions

Vulval health is a huge subject with over 25 conditions ranging from common to extremely rare. They are complex, often difficult to diagnose and challenging to treat. Patients suffer isolation, embarrassment, lack of support and little information. Often sexual function is impaired. Marriages and relationships are lost; psychological and emotional problems develop.

Sadly, GP and primary care knowledge of vulval disorders is very limited. A GP may receive only a few days of training in skin conditions - probably less than that in vulval skin conditions - and may never see a case of vulval cancer in clinic.

That's why the Vulval Health Awareness Campaign aims to raise awareness among both women and the medical profession. It promotes vulval self-examination and has produced a leaflet (available on the VHAC website). The need for education is very important in this neglected area of women's health. The VHAC offers support to women with any vulval condition and operates a health awareness month in March every year.