Understanding Lichen Sclerosus: Symptoms & Treatments for Relief from Vulva Dermatology Expert Dr Fiona Lewis

What is lichen sclerosus?

Lichen sclerosus is an inflammatory skin condition that specifically affects the genital area in both males and females.

 

What are the common symptoms of lichen sclerosus?

The most common symptom is itching which can be severe. Some people develop small paper cuts (fissures) that then become sore. If these are present, then intercourse can be painful.

 

What does lichen sclerosus look like?

The inflammation causes the lower layers of the skin to thicken which results in white areas which are usually symmetrical. Sometimes, the tiny blood vessels will pop causing miniature areas of bruising which can look like blood blisters. Until it is treated, the normal anatomy of the vulva may alter. The inner lips can stick to the outer lips, and if these stick together, this can narrow the entrance into the vagina. 

 

Who is most at risk of developing lichen sclerosus? 

In women, the most common time to develop lichen sclerosus is around or after the menopause. However, about 15% of women will develop it during the reproductive years. It can also occur in young girls, often starting between 3-5 years of age. In this age group, it usually resolves at puberty if it has been well treated, and does not tend to occur later in life.

 

What causes LS?

As with most inflammatory disease, the cause is unknown. We know that it is not an infection, due to hormonal changes, diet or allergy. There may be a genetic tendency to get it but this is not confirmed.

 

Is it an autoimmune condition?

Although about 40% of women with lichen sclerosus will have an associated auto-immune condition such as thyroid disease, pernicious anaemia etc, lichen sclerosus itself is not an auto-immune condition.

 

Is lichen sclerosus contagious?

Absolutely not! This is not a sexually transmitted disease, you cannot catch it or pass it on to anyone.

 

How is lichen sclerosus diagnosed?

Healthcare professionals who are experienced in the management of lichen sclerosus can diagnose the condition by looking at the skin. A biopsy can confirm it but this must be done before any treatment is started. It is important not to use strong topical steroid ointments if there is doubt about the diagnosis. These may well help symptoms but then make it very difficult to confirm that the symptoms were truly due to lichen sclerosus.

 

Can it be mistaken for other conditions like thrush, BV, or menopause-related changes?

There are a whole host of vulval conditions that can present with itch and it is really important to get a firm diagnosis. In lichen sclerosus, there should be white thickened areas of skin which will not occur in other conditions. Thrush should be confirmed with swabs if the symptoms are persisting after self-treatment with anti-thrush creams. 

 

Treatment & Management

What are the current treatment options for lichen sclerosus?

There is overwhelming evidence for the use of a strong topical steroid ointment (clobetasol propionate 0.05%) in the treatment of lichen sclerosus. These are perfectly safe to use for this condition, even long term. There are some non-steroidal creams called calcineurin inhibitors which are sometimes used but they are not as effective as the topical steroid.

When the diagnosis is made, the topical steroid is used for a 3 month period, usually starting with once daily for a month, then alternate days for a month and then twice a week. After this, the treatment needs to be individualised as everyone will require a different amount of treatment depending on the activity of the lichen sclerosus. 

 

How effective are steroid ointments for managing symptoms?

They are very effective. If they do not work, then there is usually another reason. It is important that you know exactly how and where to apply treatment. If the symptoms are not controlled, then you should see your healthcare professional to find out why.

If there is a change in the normal appearance of the vulva, this cannot be reversed by topical treatment but should be stopped from progressing any further.

Are there any natural or alternative treatments for lichen sclerosus?

There are no alternative treatments that will work to reduce the inflammation. Some women do find natural balms or moisturisers helpful but these should be used in addition to the active steroid treatment.

 

How important is skin hydration, the microbiome, and barrier repair for managing symptoms?

Using an ointment based emollient as a soap substitute is very helpful and is an important part of treatment. Barriers are helpful if there are problems with urinary incontinence.

 

Lifestyle & Long-Term Care

Can diet and lifestyle changes improve symptoms?

Having a healthy diet and lifestyle is always helpful for general health. There is no evidence for any specific diet and we do not recommend these.

 

How does lichen sclerosus impact sexual health and intimacy?

This can be a problem for some women if there is a change to the normal anatomy of the vulva. If the entrance to the vagina is narrowed, intercourse can be painful, as there may be small splits in the skin. This should be discussed with your healthcare professional as there are some specialist surgical options to deal with this.

 

What are the risks of lichen sclerosus leading to vulvar cancer?

There is a very small risk of developing pre-cancer and cancer on lichen sclerosus. The quoted figure is 5% but in women who are well treated with excellent control of the condition, this risk is significantly less, and even approaches no risk. 

 

What follow-up should I have?

You should be seen until the lichen sclerosus is well controlled and that you have a regimen of treatment that works for you. Many people will just use the topical steroid if they get any recurrent symptoms and this can be infrequent such as every few months. In those who have more active disease, regular application may be needed e.g. Once a week or fortnight, to keep control. It is important that you are seen for follow-up until the condition is under good control, but we would not follow everyone on a regular basis.

If you have not been referred to a hospital clinic, then your GP should be seeing you regularly in the same way as would happen in a clinic. They can advise about how to deal with any flares of symptoms. 

 

What should I look for?

Once lichen sclerosus is under good control and you know how to manage it with treatment, any concerning change will be very obvious. If you develop symptoms that do not respond to the increased use of the topical steroid (and thrush is excluded on a swab), or you notice any ulcer or lump, then you should seek advice. 

 

Anything else or further advice?

It is important to get the right diagnosis and if you have vulval symptoms that are persisting and not responding to simple treatment, see your GP for their advice.