Lichen sclerosus: symptoms, diagnosis and tips for coping with it
Itching, pain, a burning sensation—and still not really knowing what is going on. For many women with lichen sclerosus, this is exactly how it begins. Symptoms that may feel vague at first, but gradually have a greater and greater impact on how you feel in your body. The first signs are often mistaken for a yeast infection, dryness or skin irritation, for example. As a result, it can take a long time before you have any real clarity.
And that clarity is so important. Not only because an early diagnosis can make a significant physical difference, but also because finally having words for what you are experiencing can bring peace of mind. In this blog, you can read more about the symptoms of lichen sclerosus, the importance of an early diagnosis and what you can do yourself to approach the condition mindfully.
The importance of an early diagnosis
Lichen sclerosus is a chronic skin condition that usually occurs in the genital area. Although anyone can develop it, it occurs mainly in women during or after the menopause. The condition can cause itching, pain and a burning sensation. White, shiny patches may also appear on the skin.
Over time, the skin may become thinner and more vulnerable. This can result in sores, fissures or scarring. In more severe cases, the tissue may change or the labia may partly fuse together. This is precisely why it is important to take symptoms seriously and seek help promptly. The earlier lichen sclerosus is recognised, the better the chance that symptoms will remain well controlled and the skin will have an opportunity to settle.
The symptoms of lichen sclerosus
The symptoms of lichen sclerosus can vary from one person to another. Nevertheless, a number of symptoms are common. These include:
- itching of the vulva
- a burning or sore sensation
- pain when touched or moving
- white, pearly, shiny patches
- dry, thin or vulnerable skin
- sores or fissures
- pain during sex
- irritation when cycling, walking or wearing tight clothing
Symptoms sometimes begin mildly, which means lichen sclerosus is not immediately recognised. Many women therefore initially think it is a yeast infection, skin irritation or hormonal dryness. It is nevertheless important to remain alert if symptoms persist or keep returning.
The importance of an early diagnosis
Unfortunately, lichen sclerosus is still often diagnosed late. On the one hand, this is because women feel embarrassed about taking these symptoms to their GP. On the other, the symptoms are sometimes confused with other conditions, such as a yeast infection or eczema. And sometimes you may sense yourself that something is going on, but still postpone an appointment because it feels daunting or because you hope it will resolve on its own.
Yet an early diagnosis really does make a great difference. When lichen sclerosus is recognised and treated at an early stage, symptoms can often ease quickly. It also reduces the risk of the condition worsening, scarring and fusion. In short: the sooner it is caught, the better. Not only for your skin, but also for your peace of mind.
Causes of lichen sclerosus
The precise cause of lichen sclerosus is not yet known. Doctors do, however, think that several factors may play a part. One possibility that is regularly considered is an autoimmune response, in which the body attacks its own skin cells. Some doctors also suspect that hormones may have an influence, because the condition occurs relatively often in women during or after the menopause.
Because the cause is not yet fully understood, medical treatment focuses mainly on reducing symptoms and protecting the skin. At the same time, many women notice that stress, tension and feeling overloaded affect how their symptoms feel. That does not mean it is ‘all in your head’, but it does mean that the stress response can also play an important part in the level of symptoms you experience.
Treatment for lichen sclerosus
Treatment for lichen sclerosus usually consists of a combination of medical and supportive care. In most cases, a doctor prescribes a corticosteroid ointment to reduce inflammation and ease symptoms. A greasy emollient ointment is also often recommended to keep the skin supple and protect it each day.
It is important to follow the treatment carefully. Only then does the skin have an opportunity to settle. Regular check-ups also remain important so that any changes in the skin can be monitored properly. Good medical guidance is the foundation, precisely because lichen sclerosus requires care and attention.
The emotional impact of lichen sclerosus
Lichen sclerosus affects not only your body, but often your emotions as well. Experiencing pain, itching or irritation every day is difficult enough. On top of that, there is often uncertainty about your body, your future and intimacy. You may feel powerless, sad, tense or simply tired of constantly having to think about your symptoms.
Ordinary things can suddenly become difficult. Cycling may be painful, tight clothing may feel uncomfortable and sex may become more difficult. The condition therefore often touches your sense of femininity, self-confidence and freedom too. Precisely because it concerns such a vulnerable and intimate part of your body, it can affect you deeply inside as well.
For many women, lichen sclerosus is also a lonely subject. After all, it is not easy to talk about pain in your vulva—not with colleagues, not casually with friends and sometimes not even with your partner. It may therefore feel as though you are facing it alone, although that is not at all the case. Many women live with this condition and recognise how profoundly it can affect you.
What can you do yourself if you have lichen sclerosus?
Fortunately, there is also a great deal you can do to support yourself. Carefully following your treatment for lichen sclerosus is, of course, the foundation. Alongside that, it is important to consider what your body needs in order to experience more calm. Many women notice that stress has a clear influence on their symptoms. Itching, pain or irritation can often increase during stressful periods.
Lifestyle changes can also make a significant difference. Healthy food, sufficient movement and relaxation exercises can help to reduce your lichen sclerosus symptoms. They are not miracle cures, but they can support you in coping better with your symptoms. By focusing not only on combating the symptoms but also on supporting your whole system, more balance can often develop.
Tips for coping better with lichen sclerosus
Stay hopeful
A diagnosis of lichen sclerosus can cause a great deal of fear. It can therefore be tempting to search online straight away. It is wise to be cautious about that, however. Forums and images often show mainly the most severe stories. They do not present a realistic picture of everyone with the condition.
Many serious situations arise when women go for a long time without the correct diagnosis or treatment. Fortunately, in many cases lichen sclerosus can be treated and managed well, especially when it is caught early. Try, therefore, not to focus only on what might go wrong, but also on what is possible.
Talk about it
However difficult it may be, talking helps. Share your concerns with one or two people you trust. That means you do not have to carry this burden alone. Recognition and understanding can make a great difference. Sometimes it is healing simply to have someone truly listen, without immediately trying to solve it.
Take time for yourself
Medical care often focuses mainly on the physical symptoms. There is not always enough attention for the emotional impact, however. So do feel free to ask for an additional appointment if you need more space to tell your story. And outside the consulting room, allow yourself time to pause and acknowledge what this diagnosis is doing to you.
Make space for your emotions
A diagnosis such as lichen sclerosus often needs to be processed. You may feel sad or angry, or grieve the loss of ease, comfort or intimacy. That is normal. By taking your feelings seriously instead of suppressing them, more space for gentleness, resilience and recovery can gradually emerge.
Conclusion
Living with lichen sclerosus brings challenges. Nevertheless, this diagnosis does not mean there is no hope. With the right treatment, good guidance and attention to self-care, you can learn to live with the condition and bring your symptoms under better control.
More importantly, you are not alone. Although people still speak very little about it openly, many women live with lichen sclerosus and know the same questions, fears and uncertainties. That is exactly why it is so important to break the taboo, share knowledge and make space for what this condition does to you on the inside.
Lotte Boekhout practice
Have you got lichen sclerosus and been told that you ‘just have to learn to live with it’? I believe things can be different.
In my coaching, there is space for what these symptoms do to you on the inside, and together we explore what you need to regain a sense of control over your symptoms. Curious about what may be possible for you? You are welcome at my online drop-in session or for a free discovery call.
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