Treatment of vulval LS

Topical steroids

What are topical steroids?

Topical steroids are a type of medicine that’s applied directly to your skin as a cream or ointment, to reduce inflammation. They are also sometimes called topical corticosteroids.

Topical steroids are the main treatment for vulval lichen sclerosus (LS), and they play the most important part in reducing flare-ups and soothing symptoms. The word ‘topical’ just means they’re used directly on your skin, rather than taken as a tablet or medicine.

How do topical steroids help with LS?

LS causes inflammation within your skin and this inflammation can lead to itching, cracking, fusion and scarring.

Topical steroids work by switching off this inflammation, but it takes a strong or very strong steroid to get through the top layers of skin, as the inflammation associated with LS can be quite deep.

To learn more about this, watch our video about what happens to the skin when you have LS.

 

Do topical steroids come in different strengths?

Yes. In the UK there are four different strengths or ‘potencies’ of topical steroid:

  • Very strong (also known as very potent or super potent)
  • Strong (also known as potent)
  • Moderate
  • Mild (also known as weak)

Unfortunately, it can be difficult to work out how strong a topical steroid is just by looking at the box, because there’s often a number or percentage next to the name of the steroid which doesn’t actually have anything to do with its strength.

See our information about different steroids used to treat LS. If you’re not sure how strong your treatment is, check with your doctor, nurse or pharmacist.

What strength of steroid is best for LS?

When you have LS, it’s important to use a very strong or strong topical steroid to keep your symptoms calm and under control.

More research is needed to prove that a very strong topical steroid is better for LS than just a strong one, but most vulval specialists recommend starting treatment with a very strong steroid (usually clobetasol propionate ointment 0.05%). Some doctors then recommend reducing to a strong one when your LS is under control.

What’s the difference between ointments and creams?

Topical steroids for vulval LS are available as ointments or creams.

Ointments are generally seen as the most effective and soothing topical steroid option for the vulva. They’re greasier and more moisturising than creams, and because they contain less water and fewer preservatives, they’re less likely to sting or cause allergic reactions.

How much topical steroid should I be using?

This will vary from person to person and it depends on a number of things. For example, how much of the skin on your vulva and around your bottom is affected by LS and how active (or irritated) it is.

Generally, the advice tends to be to use one to two pea-sized blobs each time you put it on, but ask your doctor to show you the right amount for your body – and your LS. You might also sometimes hear doctors and nurses talk about using ‘fingertip units’ to measure creams and ointments. Usually around half a fingertip unit would be similar to one to two pea-sized blobs. You can find out more about fingertip units here

Usually when you first start treatment, you’ll be advised to use your topical steroid once a day. You can put it on at any time, but it can be helpful to do so at night, so it’s less likely to be rubbed off by clothes or toilet paper.

People also tend to notice itching more at night, so using it before bed can be soothing too.

For more tips, watch our video about applying topical steroids.

How to use steroids and emollients (Vimeo)

How often should I apply my topical steroid?

It’s always best to talk through your treatment routine with your doctor and follow their advice. In the UK, it’s generally recommended that you use your topical steroid once a day until your LS is under control, then gradually reduce it. We’ve put together a treatment template for you to fill in with your doctor so that you are clear about your individual plan.

There’s currently a large study underway, called PEARLS (opens in new tab), which is looking at how often topical steroids should be used once LS is under control. When the results are published, we’ll be adding them here.

Are there any alternatives to topical steroids?

It’s not unusual for people to worry about using topical steroids. Sometimes pharmacists or health professionals mistakenly think they should only be used short term, or avoided entirely for the genital area.

But research shows that topical steroids are safe and effective if you have vulval LS, and they’re also safely used to treat a range of other vulval skin conditions. Studies have shown that side effects (like skin thinning) are very rare if people use their steroids properly. 

It might take a bit of time to adjust to the idea of using topical steroids on a long-term basis, but they’re the best treatment we have for LS. It’s also really important to remember that active LS has the potential to cause much more damage to your vulva than topical steroids.

Topical steroids are safe to apply to the vulval skin, including the perineum and anus, if you have LS in those areas.

Topical calcineurin inhibitors like tacrolimus (also known by its brand name Protopic) and pimecrolimus (also known by its brand name Elidel) are topical immunosuppressants. They have been used to treat LS, but it’s been shown that they are not as effective as topical steroids.

What can I expect when I use a topical steroid?

Once you start using your topical steroid, you should see signs of active LS improving. For example, cracking and bleeding under your skin should happen less often, your skin texture should start to normalise, and itching should stop or reduce. If your skin has turned a white colour, this might improve but it won’t necessarily disappear completely. This return to your more normal skin texture and colour is the goal of topical steroid treatment.

If your LS has already caused scarring on your vulva, for example loss of the labia minora or scarring over the hood of the clitoris, it might not be possible to reverse this, but your treatment should prevent more scarring from happening, or at least minimise it.

Is it normal to feel a burning sensation when I first use my steroid?

Yes, this is quite common, especially at the beginning of your treatment when your LS is most active, or during flare-ups. Generally this sensation settles as your LS settles.

If you’re struggling with this burning feeling, you might find it helps to use your steroid in the day, when you’re going to be busy with other things, instead of at night, when you have less to distract you.

If you start to get a burning sensation after you’ve been using your steroid for a while, let your doctor know. Occasionally people can develop an allergy to topical treatments, so you might need to have this checked out (for example with allergy patch testing) or switch to a different topical steroid.

Should I use a moisturiser with my topical steroid?

Yes, absolutely. It’s a good idea to use a moisturiser (also called an emollient) if you have LS. Just like with your topical steroids, choosing a greasy ointment-type emollient will tend to protect your skin better than a lighter lotion, gel or cream. Emollient ointments can also provide a barrier to urine, yeasts and bacteria.

Emollients can be really soothing when your skin feels sore and irritated, so it’s good to know there’s no limit to how often you can use them, or how much you can put on.

Read more about emollients in our section on looking after your vulva.

Can I get my topical steroid on repeat prescription?

Yes. It’s very important to get your steroid on repeat prescription and make sure you don’t run out.

It’s also important to check that your GP knows exactly which topical steroid you’re using. Mistakes can sometimes happen because the same steroid can have more than one name, or have a similar name to a weaker option. If you’re prescribed something you think might be different to your usual treatment, it’s always ok to ask your doctor or pharmacist about it.

Topical steroids used most often for vulval LS

Dermovate Clobaderm

  • Medical name: Clobetasol Propionate 0.05%
  • Strength: very strong (very potent/super potent)
  • Notes: The most commonly prescribed first treatment for vulval LS. Despite the low percentage in the name, this is a very strong topical steroid.

Betnovate Audavate

  • Medical name: Betamethasone valerate 0.1%
  • Strength: strong (potent)
  • Notes: Sometimes used as a first treatment or maintenance treatment.

Synalar

  • Medical name: Fluocinolone acetonide 0.025%
  • Strength: Strong (potent)
  • Notes: Sometimes used as a first treatment or maintenance treatment. Often used if people have a suspected contact allergy to topical steroids.

Elocon

  • Medical name: Mometasone furoate 0.1%
  • Strength: strong (potent)
  • Notes: Sometimes used as a first treatment or maintenance treatment.

Locoid

  • Medical name: Hydrocortisone butyrate 0.1%
  • Strength: strong (potent)
  • Notes: Sometimes used as a first treatment or maintenance treatment. Not to be confused with plain hydrocortisone which is a weak (mild) topical steroid.

Diprosone

  • Medical name: Betamethasone diproprionate 0.05%
  • Strength: strong (potent)
  • Notes: Sometimes used as a first line or maintenance treatment.

Cutivate

  • Medical name: Fluticasone proprionate 0.005%
  • Strength: strong (potent)
  • Notes: Sometimes used as a first line or maintenance treatment.

Topical steroids that are not thought to be strong enough to treat vulval LS

Eumovate Clobavate

  • Medical name: Clobetasone butyrate 0.05%
  • Strength: moderate
  • Notes: This isn’t usually strong enough to treat vulval LS and is sometimes prescribed by mistake because the generic name is very similar to Dermovate.

Hydrocortisone

  • Medical name: Hydrocortisone
  • Strength: mild
  • Notes: This comes in several percentages (0.5%, 1% and 2.5%) but they’re all mild and not strong enough to treat vulval LS.

Other treatments

Overview

Sometimes when people are first diagnosed with vulval lichen sclerosus (LS), topical steroids don’t work as well as their doctors expect. In this section we’ll look at why that might be, and alternative treatment options.

Some of these alternative options are already available, while others are still being tested in studies. If they’re proven to be effective, they may be available in the future.

What if topical steroids don’t work?

If your prescribed topical steroid treatment doesn’t work, the first thing your doctor will do is assess why that might be. They’ll explore whether:

  • You’re using your topical steroid on the wrong area
  • You’ve got an infection that’s making your LS worse
  • There’s another reason for your symptoms, like a lack of oestrogen, thrush or an allergic reaction or sensitivity to the steroid
  • Something else is irritating your skin, like other over-the-counter products or incontinence

Your doctor might also do extra checks to make sure your LS diagnosis is actually correct. That might include taking swabs or a biopsy to rule out any other conditions that could be causing your ongoing symptoms.

If they’re sure your symptoms are caused by LS and the topical steroids still aren’t working, there is a range of other options they might consider to get things under control.

Other topical treatments for LS

Two different anti-inflammatory topical treatments, called topical tacrolimus (brand name Protopic) or pimecrolimus (brand name Elidel), are sometimes used to treat LS.

There are some studies showing the effectiveness of these treatments, but their side effects can be uncomfortable. They can create a burning feeling on the skin for the first few applications. This usually goes after 1-2 weeks, but some people can’t tolerate the sensation. Some doctors also aren’t happy to use this treatment due to a theoretical chance of it increasing the risk of cancer development.

Tablets for LS

There are lots of tablets (also known as oral medications or ‘systemic’ treatment) used to reduce inflammation in skin conditions. Many of them have been available for decades and are commonly prescribed. These are sometimes used to treat LS, but none have been tested in clinical studies, so we don’t have solid evidence on how well they work. They can only be prescribed by a specialist and you’ll need blood tests to monitor for side effects.

These tablets include:

  • Oral steroids: these are sometimes given as a short course, starting at a higher dose and gradually reducing over a period of time (for example 4-6 weeks).
  • Acitretin: this can be useful if your skin has thickened (a process called hyperkeratosis).
  • Methotrexate: this can be particularly useful if you also have LS on other parts of your body.
  • Tetracycline antibiotics: these are sometimes used for their anti-inflammatory effects (rather than for antibacterial properties) but very few studies have been carried out on their use in LS treatment.

What other treatments are being researched?

Topical Janus kinase (JAK) inhibitors

These new topical treatments are currently being tested in clinical trials for LS. If it’s proven that they can successfully reduce inflammation, JAK inhibitors could offer a new treatment for LS that doesn’t rely on steroids.

Laser treatment

Laser therapy is also being researched as a treatment option for LS. There are several different types, but the CO2 laser is the most commonly used with LS. Skin is usually prepared with numbing cream before laser therapy is used on the affected area.

Unfortunately, studies so far haven’t been able to prove that lasers reduce inflammation, so there’s limited evidence to support using them as a main treatment option for LS, although some patients do report an improvement in their symptoms. So far this isn’t available on the NHS because more research is needed.

Platelet-rich plasma (PRP)

This is a form of regenerative medicine. Regenerative medicine focuses on repairing or replacing damaged tissues or organs. To do this, it uses stem cells (unspecialised cells able to become any type of cell your body needs), growth factors (proteins that stimulate healing) and biomaterials (materials that support or replace your own tissues).

PRP involves using your own plasma and platelets (taken from a sample of your own blood) and injecting them into the affected skin on your vulva to help your tissue heal.

While PRP has had positive results in treating injuries, there hasn’t been enough good quality research on its effectiveness for LS, and results so far have been mixed. It isn’t available on the NHS.

Lipofilling (also known as fat grafting)

Another form of regenerative medicine, lipofilling involves transferring a small amount of fat from one part of the body to another. One study has shown promising results in reducing scarring and fibrosis (hardening and thickening of the skin), and researchers have also found that it may help to improve LS symptoms.

However, more research is needed to confirm these findings and explore the long-term benefits, so it’s not currently approved as an LS treatment.