Vulval lichen sclerosus
Causes, symptoms, and signs
What is vulval LS and who can get it?
Lichen sclerosus (LS) is a long-term skin condition that mainly affects the genital area, although it can actually appear anywhere on your skin. It’s believed to affect at least 1 in 100 women, or people assigned female at birth. Men or people assigned male at birth can have penile LS, but this happens much less often.
It was previously thought that vulval LS mainly affected young children and postmenopausal women, but recent research is changing that. Today, we believe people of all ages can have LS, but it can often take several years before they’re successfully diagnosed.
That’s one of the reasons we created this guide. It’s here to help you understand the symptoms of LS, get support and treatment, and learn to live more comfortably with the condition. It’s aimed at any adult with vulval LS, as well as carers and healthcare professionals.
What is lichen sclerosus (Vimeo)
What causes LS?
The cause of LS isn’t yet fully understood.
Some people seem more prone to it than others, and we know it can run in families, so it’s likely some people’s genes make them more at risk of developing it.
Autoimmune conditions, where the body’s immune system targets normal tissues, tend to happen more often in people with LS. These include morphoea, lichen planus, alopecia, vitiligo, thyroid autoimmune disease, diabetes, Crohn’s disease and coeliac disease. However, LS itself hasn’t been proven to be simply an autoimmune condition.
In people with vulval LS, urinary incontinence (leaking pee) also tends to be more common, but we don’t yet know whether LS causes incontinence, or if LS is caused by incontinence. What we do know is that friction or damage to the skin for any reason can trigger LS and make it worse.
It’s important to know that LS isn’t caused by an infection. It’s not contagious and can’t be spread through contact, including sex. It’s not related to allergies, and it doesn’t lower your immunity or affect your internal organs.
What are the symptoms and signs of vulval LS?
The most common symptoms reported by people with vulval LS are itching or discomfort around the vulva, but there’s a range of other symptoms you might notice too.
Sometimes people experience bleeding around their genitals or bottom because of cracks (known as fissures) in their skin. Some people find sex painful, less pleasurable, or even impossible. For others, going to the toilet (either to pee or poo), can also be painful.
LS symptoms can make all sorts of ordinary, everyday activities, like sitting, walking and exercising, feel uncomfortable or difficult.
Common symptoms you might feel
- Itching
- Painful sex
- Pain or soreness
- Burning
- Irritation
- Feeling of dryness
- Change in sensation
- Pain when you pee or poo
- Disturbed stream when you pee
If you think you might have LS, or want some advice about getting help from a health professional for your vulval symptoms, read our information on diagnosis and support.
LS can also be asymptomatic, which means some people can have the condition without experiencing those uncomfortable or painful symptoms. Even if that’s the case, they might still notice some visible signs of LS.
Visible signs you might notice
- White or pale patches of skin
- Crinkly or thickened skin
- Swelling
- Small cracks (fissures) in the skin
- Bleeding or bruising
- Areas of your vulva fusing together
LS can often cause white or pale patches of skin on your vulva and around your bottom. You might also notice these patches merging into areas of crinkly or thickened skin.
It’s common to experience swelling, particularly around your clitoris, or to notice small cracks (fissures) appearing in your skin. You might also see blood under the skin or bruising.
Over time, if it isn’t treated, LS can also cause what’s known as scarring or fusion, which is where parts of your vulval skin start to stick together.
It means your inner lips (labia minora) might shrink and become stuck down, while your outer lips (labia majora) might start to stick (or fuse) together. Sometimes this can make the entrance to your vagina narrower, and the skin surrounding your clitoris stiffer and less flexible.
For more about scarring and fusion, read our information on LS in the long-term.
Why does the skin change?
Your skin is divided into two main layers, the epidermis on the surface and the dermis underneath. The dermis is a complex structure, and contains blood vessels, nerves and collagen.
When you first get LS, it increases inflammatory cells (called T cells) which collect where your epidermis and dermis meet. These cells release tiny proteins called cytokines which upset the normal balance of your skin, affecting the way it works and renews itself. As LS develops, your epidermis (the top layer of your skin) becomes thinner. This is called epidermal atrophy, and it can make your skin look thin and wrinkled.
Cells called fibroblasts within your dermis (the deeper layer of your skin) also start to produce too much collagen. This damages your skin’s normal scaffolding structure, meaning tiny blood vessels can start to break and bleed because they’re no longer getting the support they need.
In time, the collagen in your dermis gets so thick that blood vessels and other structures disappear – this is called fibrosis and it’s what causes the scarring people with LS often see.
This process can make your skin look white, and become brittle, itchy and prone to cracking. Over time, it can also change the appearance and shape of your vulva – these are called structural (or architectural) changes.
What happens to the skin? (Vimeo)
How can steroid treatment help?
At the moment, topical steroids (also known as topical corticosteroids) are the best treatment we have for LS. By ‘topical’ we mean a treatment that’s applied to your skin, usually as an ointment or cream.
In LS, topical steroids reduce the inflammation caused by your body’s T cells. This helps to stop damage to your skin and ease discomfort. To do this, they need to be very strong (you might hear this described as potent or very potent) so they can work deep down in your skin where the inflammation and damage is happening.
To find out more about topical steroids, and other options, explore our treatment section.
Are there any complications with vulval LS?
The most serious potential complication with LS is an increased risk of cancer. But it’s important to remember that vulval cancer is very rare, so your risk will still be very low. If your LS is properly treated, it’s thought this risk is even lower.
We have lots more information on vulval cancer and pre-cancer.
Is there a cure for LS?
LS is a long-term skin condition and, right now, there isn’t a cure. But while many people have it for many years, it’s really important to remember that you don’t have to live with constant symptoms or discomfort. Help is out there, and we’ve put together this guide to help you find it.
Created by healthcare professionals, expert researchers and, most importantly, people with LS, it’s your guide to understanding your treatment options, managing everyday life and feeling better, more of the time.
Extra resources
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Anatomy of the vulva
Understanding your body
To really understand vulval lichen sclerosus (LS), it’s important to understand your body, your vulva and what’s normal for you.
We know lots of people feel uncertain about the anatomy of that area, or uncomfortable asking questions in person. So in this section, we’re going to explain the different parts of the vulva, and how they change over time.
What exactly is the vulva?
Lots of people use the word ‘vagina’ when what they’re actually talking about is the vulva.
If you’re a woman, or were assigned female at birth, your vagina is the internal part of your genitals, and your vulva is the part that’s on the outside of your body.
It’s the area of skin between your legs, going from the top of the area where pubic hair grows to just behind the entrance to your vagina.
Watch our video or read on to find out more about the anatomy of the vulva.
Anatomy of the vulva (Vimeo)
Anatomy of the vulva
Your vulva is made up of the following parts
Mons pubis
This is the soft area where pubic hair grows. It’s there to protect the pubic bone underneath, and acts like a cushion. As you go through puberty, this area becomes more rounded.
Outer lips (labia majora)
These are the soft, plump skin folds on the outer part of your vulva. They come in different shapes and sizes, and usually grow pubic hair. The labia majora are sensitive and swell when aroused. Because they’re soft and plump, they provide cushioning during sex.
Inner lips (labia minora)
The inner lips run from your clitoris down to the area of skin between your vagina and bottom (called the perineum). They’re also very sensitive and swell when aroused. Labia minora are extremely variable in size and shape, so they can look very different in different people.
Clitoris
Your clitoris is highly sensitive and contains tens of thousands of nerve endings, largely responsible for pleasurable sensations during sexual activity. The head (glans) is the visible part, and sits at the top of your labia minora, or inner lips. It’s about the size of a pea, but the size varies in different people. The body of the clitoris actually extends down underneath your labia on both sides.
Urethral opening
Your urethra is a tube which carries pee from your bladder down to the urethral opening, where it leaves your body. The urethral opening is a tiny hole between your labia minora, sitting below your clitoris but above your vaginal opening.
Vaginal opening
Also called the introitus, your vaginal opening is the entrance to your vagina – the stretchy, muscular tube inside your body which leads to your cervix and womb.
Does your vulva change as you get older?
Yes. Just like the rest of your body, your vulva changes over time. Hormonal changes during puberty, the menstrual cycle, pregnancy and menopause can all leave it looking a little different than before.
At puberty, the inner and outer lips become gradually larger and thicker. After puberty, your labia, particularly the labia minora (inner lips), become more prominent and more easily visible. The thickness and length of your labia can also increase after pregnancy and childbirth. You might also notice that your labial skin becomes darker in colour as you get older, or during pregnancy.
After menopause, your body produces less of the hormone oestrogen, and that can leave your vulva and vagina feeling thinner and less hydrated. As a result, you might notice your vulva feels drier and less plump.
Do all vulvas look the same?
No. As well as all the changes that happen to your vulva as you go through life, it’s important to remember that everyone’s vulva is different. Yours won’t necessarily look like the next person’s, and that’s ok.
Sometimes the pictures we see in the media, or in pornography, can make us feel self-conscious about how our bodies look. But vulvas and labia come in different shapes, sizes, and shades of pink, red, and brown. There isn’t one right way to be. One side of your labia might look bigger than the other, or the skin tone there might be different to the rest of your body. All of this is completely normal.
We have a whole range of resources showing the variety of sizes and shapes of normal labia and vulvas.
What should I do if I’m worried?
If something doesn’t seem right to you, or you’re worried about a change in the way your vulva looks or feels, it’s important to talk it through with a health professional. The doctor or practice nurse at your local GP surgery is a good place to start, but if you’re already having hospital or clinic appointments, you could talk to your doctor there too.
Where can I go to find out more?
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Checking your vulva
Why you should check your vulva
If you’ve never looked at your own vulva, you’re not alone. A lot of people feel too shy or intimidated to take a look, or find it too physically difficult to do, especially if mobility is a challenge.
But your vulva really is just like any other body part. To look after it, you need to get to know it and build up the confidence to recognise what’s normal for you.
Just like we need to check our breasts regularly, we need to check our vulvas too, keeping a look out for any potentially worrying changes. If you have vulval lichen sclerosus (LS), that’s even more important. Getting familiar with how your vulva looks will help you notice changes sooner, and apply your treatment better – both of which will help you manage your LS and live more comfortably with it.
How to examine your vulva
If you’ve never checked your vulva before, and you’d like some guidance, we’ve put together a how-to video, along with a set of instructions, to help you get you started.
How to check your vulva (Vimeo)
Before you start
Checking your vulva can be daunting, especially if you haven’t done it before. But the more you do it, the more confident you’ll feel and the more familiar you’ll become with your vulva. Remember, they come in all shapes, sizes and shades of pink, brown and red. Checking yours is about knowing what’s normal for you.
So, what’s the best way to look at your vulva?
Choose a brightly lit, private place – like your bathroom. Find a position that feels comfortable for you. You could try standing with one foot on the toilet, bath or a chair. Hold a mirror in one hand, or balance it somewhere that gives you a good view of your vulva.
Alternatively, you could try sitting on the floor in front of a mirror. Use your fingers to part your outer and inner lips, then look at and feel all the parts of your vulva. Look at and under all the folds of skin, including around your clitoris, between the entrance to your vagina and bottom (or anus), and around your bottom.
What are you looking and feeling for?
Vulva checks are about knowing what’s normal for you, and looking for signs things might be changing, or not quite right. It’s important to check for signs of vulval cancer and precancer. These can include:
- Lumps
- Patches of thickened or raised skin
- Colour changes, like white patches, darker spots or red, inflamed areas
- Ulcers or sores.
If you’ve got vulval lichen sclerosus (LS), it’s important to know which parts of your vulva are affected and what that looks like, so you can use your medication in the right places and check it’s working. Look for new patches of white or crinkly skin or bleeding under your skin. Check for cracks, paper cuts, or folds of skin fusing together.
How often should you check your vulva?
It’s a good idea to get into a routine. Some people find it helps to pick a certain date each month, or do it just after their period. If you haven’t got LS, or your LS is stable, you might not need to do it so often. But if you do see something you’re worried about, or you’re treating an LS flare-up, you might want to check more often to see whether things are settling.
What if you notice any changes?
If you’re worried about anything, or your LS isn’t settling with treatment, book in with your GP. Make sure they know they’ll need time to examine you, so they can check your symptoms or changes.
Extra resources
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The University of Manchester has also produced an online leaflet and video resource with more information and a demonstration by a real patient , which you might find helpful.
Warning: please be aware that this leaflet was designed for patients with a whole range of vulval conditions, including vulval cancer. It includes detailed photographs of real vulvas with these skin conditions.