How to manage lichen sclerosus and genital itching

Living with undiagnosed lichen sclerosus (LS), my vulva prickled and burned, and felt as if it had been etched with small paper cuts. Sitting, walking and sexual activity became a challenge, and the infernal itching and soreness kept me awake at night and made it difficult to concentrate at work.

These flare ups persisted despite using numerous over-the-counter treatments for 'intimate itching' and GP-prescribed pessaries for 'thrush'. All tests for sexually transmitted infections (STIs) came back negative and I was continually told by GPs and sexual health clinicians that I just had sensitive skin.

In my mid-20s I was diagnosed with vulvodynia, as penetrative sex was excruciatingly painful, but this didn't account for the ongoing itching and 'paper cut' sensation. It wasn’t until I was 34 that a vulval specialist diagnosed LS (along with vulvodynia and secondary vaginismus).

Googling the condition, I was in tears as I scrolled through graphic photos of severe, untreated LS - open sores, skin cancer and large patches of pale, crinkled flesh. But it is unlikely the disease will ever progress to this stage if treated early.

I am happy to report that for the past 15 years I have managed my LS symptoms successfully through regular use of the topical steroid ointment, Dermovate®. (As I go through menopause, supplementary oestrogen is also proving useful in keeping my vulval skin healthy). Arguably my 'vulval architecture' may have changed slightly due to the LS progressing before diagnosis, but there are no obvious white patches and to the untrained eye my vulva looks 'normal'.

What is lichen sclerosus?

Lichen sclerosus (LS) is a non-infectious, inflammatory skin disease which most often affects the genitals and anal area, and can cause white patches to appear on the vulval skin.

Without treatment the skin can become thin, fragile and prone to minute splits and fissures. The vulva may even scar and shrink over time, leading to loss of the labia minora (inner vaginal lips). This shrinkage can narrow the entrance to the vagina, making sex painful as a result. In a small number of cases, if left untreated, LS can cause vulval cancer.

Dr Emma Edmonds is a vulval dermatologist at University College Hospitals London, speaking on behalf of the British Skin Foundation. "LS has a spectrum of severity," she says. "A few people will have very bad disease, but just because you’ve been given an LS diagnosis, it does not mean that it's going to get worse like the images you may see online. With treatment, periods of remission are likely when the disease is not active, and if you're monitored regularly, the chances of vulval cancer are tiny."

"Early diagnosis is so important," adds Dr Nitu Bajekal , a consultant gynaecologist and obstetrician at Spire Healthcare. "Yet many mild cases go undiagnosed and in my experience numerous women put up with symptoms of vulval and anal itching until the condition is advanced, or they are wrongly diagnosed as having thrush or other infections by their doctor."

Cause and effect

Lichen sclerosus is considered by many to be an autoimmune condition, but this is a contentious issue.

"I did my thesis on LS", says Edmonds, "and my research doesn't corroborate this. Officially there doesn't seem to be a genetic predisposition either and we still don't know why people get it."

However, there are various factors that are widely considered to exacerbate symptoms.

"I see LS in young girls and it can appear at any age, but menopause can be a particular trigger because a lack of oestrogen can thin the vulval skin," explains Bajekal. "Delayed diagnosis and treatment can allow symptoms to worsen. And stress, lack of sleep and other health conditions, such as poorly controlled or undiagnosed diabetes, can definitely play a role in flare-ups; I also recommend an anti-inflammatory whole-food plant-based diet."

Both doctors are adamant that soaps, shower gels and feminine wipes should be avoided. And be wary of scratchy toilet paper - dab rather than wipe.

"We know that urine acts as an irritant. It doesn't cause the LS, but it certainly perpetuates it," says Edmonds. "LS spreads into areas of irritation, so I tell my patients to use a barrier cream, a bland emollient as a moisturiser and to wash with."

When it comes to sex, if you have LS then using plenty of organic, pH-balanced lubricant can be useful. "Go for it!" encourages Edmonds. "Use a lot of lube and maintain sexual activity, unless of course it is painful, as this is positive. Treat the vulva a couple of days later with a topical steroid if the LS flares up reactively."

Diagnosis and treatment

LS is a complex yet manageable condition, but it is crucial to begin treatment before it progresses and to remain under the care of a knowledgeable professional.

"First off, see your GP, and your local sexual health clinic can also test for STIs to rule out other causes," advises Edmonds. "If itching, soreness and symptoms persist for six months, it is important to get referred to a vulval specialist."

"To confirm LS you may need a vulvoscopy," advises Bajekal, "which involves looking at the affected areas with a magnifying instrument, or a skin biopsy by a vulval specialist to confirm diagnosis. Follow-up management is crucial, as is self-care."

First-line treatment is the regular use of a topical steroid cream or ointment, such as Dermovate®, which calms the inflammatory response. Laser treatment to the vulva may also be of benefit to some patients, particularly menopausal women reluctant to use supplementary oestrogen - though this is not yet recommended by the National Institute for Health and Care Excellence (NICE) or available on the NHS.

In more aggressive cases (where LS has resulted in scar tissue forming and changes to the vulva that make urination or sexual activity difficult), surgical treatment may be necessary. However, this is rare if the condition is diagnosed and managed correctly in its early stages.

For information and advice about LS, contact the British Skin Foundation and the Association for Lichen Sclerosus & Vulval Health.