Treating lichen sclerosus with steroid and emollient ointments

Written by Lotte Boekhout

When you are diagnosed with lichen sclerosus, you often find yourself being offered two types of ointment fairly quickly: a steroid ointment and a greasy emollient. These usually form the basis of treatment for lichen sclerosus. On paper, that may sound simple. But for many women, it does not feel simple at all.

What is it like to have symptoms in such an intimate place and then hear that treatment for lichen sclerosus mainly consists of applying ointments? How does it feel when you realise that the medical options are actually quite limited? I want to make space for precisely that in this blog too—not only the medical treatment, but also what it can do to you on the inside.

What does treatment for lichen sclerosus involve?

Treatment for lichen sclerosus usually involves applying two important ointments: a steroid ointment and a greasy emollient ointment. The steroid ointment helps reduce inflammation and bring symptoms under control. The emollient ointment helps protect and care for the skin each day and keep it supple.

Steroid ointment for lichen sclerosus

When you are diagnosed with lichen sclerosus, a doctor will usually prescribe a steroid ointment first. This is an ointment containing corticosteroids: an anti-inflammatory substance that suppresses the immune response in the skin. This allows the skin to settle and can reduce symptoms such as itching, pain and irritation.

This is often prescribed by a GP, gynaecologist or dermatologist. It is usually a potent corticosteroid ointment such as clobetasol. The ointment reduces inflammation and helps the skin settle. It is the usual first-line treatment for lichen sclerosus.

Reducing symptoms with steroid ointment

Many women find that symptoms such as itching, pain, burning or irritation often ease quickly as a result. At first, the usual advice is to apply the corticosteroid ointment every day. Once symptoms become calmer, you generally taper it gradually to a maintenance dose. This is done step by step, based on your symptoms and always in consultation with your doctor.

The maintenance dose is very individual. For one person, once a week is enough. Another may need it twice a week, sometimes less often or temporarily more often during a flare-up. Together with your doctor, you look for the right dose or application schedule. Ideally, you want to apply as little as possible, but enough to keep the skin settled.

Finding that balance can be quite difficult at first. Sometimes you reduce the dose a little too quickly and notice that your symptoms start to increase again. That does not mean you are doing it wrong or that the treatment is not working. It often mainly means that your skin still needs a little more support and that you are still looking for the right balance. This too is part of the process: attuning, adjusting and noticing again what works for your body.

Why maintenance treatment is important

I think it is important to explain that steroid ointment is not only intended to reduce your symptoms at that particular moment. It is also used to help prevent new flare-ups and more severe problems, such as scarring, skin changes and fusion. That is why a maintenance dose is so important, including at times when you have fewer symptoms.

There is also a small chance that women with lichen sclerosus will develop vulval cancer in the long term. This is another reason why good treatment is so important. By using the steroid ointment correctly, including at a maintenance dose when you have few or no symptoms, you really do reduce that risk enormously.

Concerns about long-term use of clobetasol or another steroid ointment

If you are reading this and thinking, ‘But I find that quite worrying,’ I understand that very well. It is a potent ointment used on a vulnerable place. Many women have questions about long-term use, possible side effects or the fear that the skin will become thinner. Those questions are understandable.

It can really help to discuss those concerns with your doctor. Your doctor can think things through with you, reassure you and explore what suits you. If you have concerns about reducing the dose, stopping or long-term use, it is important that there is room for those questions. And if your doctor does not seem particularly open to that, remember that you are allowed to raise it yourself. A second opinion may also be helpful. It is your body. Your questions, doubts and uncertainties deserve to be taken seriously.

I had those questions too. Everyone ultimately makes a personal choice about whether or not to continue using steroid ointment. It is your body. But do make sure that you are well informed by reliable sources.

My personal experience with steroid ointment

For me personally, medical guidance has always been the deciding factor. Scientific studies show that stopping the ointment can cause symptoms to return or the skin to become unsettled again. It therefore feels right for me to keep using it, even when I have no symptoms. I have not experienced any side effects myself.

I am now on a low maintenance dose: once every two weeks on average. That is at the low end, but it is exactly right for me. This also shows how individual treatment is. What works for one person does not have to be exactly the same for another.

Emollient ointment for lichen sclerosus

Alongside the steroid ointment, a greasy emollient is often recommended for lichen sclerosus. To be honest, I think this ointment sometimes receives too little attention, even though it is incredibly important.

A greasy emollient helps keep the skin supple, protected and well moisturised. Where the steroid ointment mainly reduces inflammation, the emollient supports the skin in its recovery. It nourishes, soothes and protects the skin, as it were. That is important because skin affected by lichen sclerosus is often vulnerable, dry and sensitive to friction or irritation.

Which emollient is often used?

One commonly used option is cetomacrogol cream or another greasy base ointment. Some doctors advise applying it several times a day, precisely because this daily care helps keep the skin calmer. The emollient remains important on days when you do not use steroid ointment. You can apply cetomacrogol cream or another greasy emollient two or three times a day, depending on what your skin needs, and possibly more often during a flare-up.

Using steroid and emollient ointments alongside one another

It is also useful to know that if you use both steroid and emollient ointments, it is generally helpful to leave some time between them. Personally, I do not apply an emollient later on evenings when I have used my steroid ointment. The following day, however, I use extra skincare to support my skin well again.

What I often see in practice and hear in conversations with women is that the focus is mainly on the steroid ointment. That makes sense, because it feels like the ‘real’ treatment—the medical ointment. But this sometimes means the emollient is forgotten, even though that daily care can make a great difference: less dryness, less tightness and less friction, and more comfort, nourishment and protection.

Why daily skincare remains so important

The emollient may sound less important, but it certainly is not. Do not see it as an extra or an afterthought, but as a regular part of your daily skincare. Particularly once you have tapered your steroid ointment, you will need to continue this daily care consistently in order to care for the skin properly and support its recovery. The skin remains nourished, moisturised and protected, as it were.

In another blog, I write in more detail about self-care tips and possible natural alternatives to greasy emollient ointment. If you would like to read more, you can find that blog HERE.

The emotional impact of lichen sclerosus

And then there is another aspect I very much want to discuss. It often receives less attention, but may be just as important for many women. What does it actually feel like to discover that treatment for lichen sclerosus essentially comes down to two ointments?

For many women, that is quite confronting. You receive a diagnosis affecting an intimate, sensitive place on your body. A place that is not only physically important, but often connected with femininity, sexuality and your self-image. And then it turns out that the medical treatment is fairly limited.

When treatment feels limited

Of course, those ointments can do a great deal. They are important. They can reduce symptoms and help prevent further problems. But that does not alter the fact that treatment may also feel too limited.

If the skin has already been damaged through scarring or fusion, for example, it cannot simply be reversed. The ointment cannot resolve it. That can be particularly difficult to take in. You may realise that treatment is primarily intended to reduce symptoms and prevent further deterioration, rather than restore everything to the way it was.

I can well imagine that you had hoped for more: for a clear solution; for treatment that not only keeps your symptoms stable, but also gives you the sense that the lichen sclerosus will truly go away or can be cured. Discovering that this is not available may bring up feelings of sadness, frustration, fear, powerlessness or loneliness.

I think there should be more space for that.

More space for the emotional aspect in the consulting room

Conventional healthcare could also pay more attention to the emotional aspect of lichen sclerosus. Living with lichen sclerosus is not only about medical treatment, however valuable doctors’ guidance may be. It is also about learning to cope with something chronic and with a changing body. It is about caring for a part of your body that may evoke feelings of vulnerability, shame or sadness. About repeatedly attuning to what you need. And sometimes, too, about grieving that things are not as you had hoped.

If that is how you feel, there is nothing strange about it. And you are not alone.

I know this only too well from my own experience. I also hear it from many women I speak to in my practice. That is precisely why I believe good care is broader than medical treatment alone—not instead of that treatment, but alongside it. So that, if you need it, there can also be space for what the symptoms do to you on the inside.

Conclusion

Treatment for lichen sclerosus usually consists of two important pillars: a steroid ointment and a greasy emollient. The steroid ointment helps reduce inflammation and bring symptoms under control. The emollient helps protect and care for the skin each day and keep it supple. Both are important.

Alongside this practical treatment, however, there is an emotional layer that also deserves attention. Good care is not only about what you apply to your skin, but also about how much space there is for what you feel.

Read my latest articles about lichen sclerosus

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