Looking after LS in the long term

Overview

Whether you’re going through a flare-up or a more comfortable time, if you have vulval lichen sclerosus (LS), it’s really important to stay on top of your treatment. Without that ongoing treatment, LS can progress and start to cause structural changes to your vulva, which are often irreversible. These are also sometimes called ‘architectural’ or ‘anatomical’ changes, and in this section we’ll explore the signs to look out for.

If you’re not sure what the different parts of your vulva are called, see our guide on vulval anatomy.

Skin fusion

Skin fusion (also known as adhesion) is when parts of the skin on your vulva start to stick together, changing its structure. This can affect your labia or your clitoris.

What is labial fusion?

Labial fusion is when your labia minora and labia majora stick together. This can give your vulva a flat appearance, or mean that the individual labia are hard to see or even invisible. Sometimes it also means that your left and right labia minora stick to each other, also known as ‘bridging’.

This fusion can make it difficult to insert a tampon, or make certain sexual activity painful or (for some people) impossible. You might also notice your skin tears or splits more easily.

Labial fusion can also cause changes when you go to the toilet. You might notice spraying or dribbling when you pee, because the liquid can’t leave your body in the normal way. LS doesn’t typically affect your urethra (the tube carrying pee out of your body), but the fused labia can get in the way of your normal flow, making peeing look and feel different.

In very severe cases, pee, vaginal discharge and menstrual (period) blood can build up under the fused skin. This is rare, but if it happens to you, get medical help immediately.

What is clitoral fusion?

Clitoral fusion is when the hood of your clitoris sticks to and scars over the head of your clitoris.

This fusion can be mild, moderate or severe. It might make it difficult to pull back the clitoral hood to reveal the head, and that can lead to complications. For instance, occasionally, dead skin cells and body oils can build up and become trapped under the hood, forming a swelling known as a ‘clitoral pseudocyst’, which can be uncomfortable.

In some people, fusion can also lead to reduced sensation in the clitoris which, in turn, can make it more difficult to have an orgasm (climax). If this happens to you, it’s important to understand that your clitoris is still there, underneath the fusion, and it isn’t damaged in any way.

To find out how your doctor can help, read about treatment options if LS progresses.

Overview

The best treatments we have right now for vulval lichen sclerosus (LS) are topical steroids. These are usually ointments, or sometimes creams that you rub gently onto your skin to reduce inflammation. Our main treatment pages have lots more information on how steroids work and how to use them.

Steroid treatment can help you get symptoms under control and reduce your risk of developing vulval cancer. But if you’ve already got skin fusion or scarring, steroids may not be able to reverse it.

This fusion or scarring can change the way your vulva looks, feels and works, so if it’s causing pain, making sex difficult or stopping you peeing properly, surgery might be an option to consider.

In this section we’ll look at what surgery involves, and what options might be available, so you can talk to your doctor about whether it’s right for you.

It’s important to remember though: most people with LS won’t need surgery.

How long do the benefits of surgery last?

At the moment, very few studies have looked at the outcomes of surgery for LS, and more research is needed to understand how long the benefits last.

Why surgical aftercare is so important

Whenever you have surgery, your aftercare (also known as post-operative care) makes a huge difference to the results you’ll see and feel. So before you go ahead, talk to your doctor about what you’ll need to do afterwards. There might be things you need to buy or get ahead of time, like a peri bottle to help you wash or go to the toilet more comfortably, or ointments to look after your wound.

Remember that following your aftercare instructions carefully is critical for success, so ask your doctor for a printout you can take home. If a carer, family member or friend will be helping you after your surgery, show them the instructions too.

Overview

Vulval lichen sclerosus (LS) isn’t a cancerous condition, but over a long period of time, it’s thought that the inflammation associated with LS increases the risk of developing precancerous changes (known as VIN) and vulval cancer.

This is especially the case if LS isn’t diagnosed and treated appropriately, which is why getting a diagnosis, and using steroid treatment to address the inflammation is so important.

In this section we’ll look at the risks associated with LS, the different types of precancerous cells, and the signs, symptoms, diagnosis and treatment associated with vulval cancer and VIN.

What are precancerous cells?

Precancerous cells are cells that have grown abnormally, so their size, shape or appearance is different to normal, healthy cells. They haven’t yet developed into cancerous cells, but there’s a greater risk that they might. So, depending on their type, your doctor might recommend monitoring or treating them.

In the vulva, precancerous cells are known as VIN, which stands for vulval intraepithelial neoplasia. There are two main types, ‘usual’ or ‘classical’ (shortened to VIN), and ‘differentiated’ (shortened to dVIN).

What is dVIN and what happens if I have it?

Differentiated VIN (known as dVIN) is the type that’s often associated with LS. It has a higher risk of developing into cancer than usual or classical VIN, so it’s very important that it’s treated with surgery.

How is dVIN diagnosed and treated?

If you’re worried you might have dVIN, ask your doctor to refer you to a gynaecologist or vulval specialist. To make a diagnosis, they’ll take a sample of skin (a vulval biopsy) which is looked at under a microscope.

If you do have dVIN, it should be treated with surgery. That’s because there’s a high risk of cancer already being present, or the cells progressing to become cancerous.

Signs and symptoms of vulval cancer

The symptoms of vulval cancer can be the same as those of many other vulval conditions (including LS) and include itching, soreness, painful sex and bleeding (or a blood-stained discharge).

You might also notice visual signs, including:

• A lump, wart-like growth or raised rough area.
• A patch of skin that looks or feels different in texture. It might be pink, brown, red or white.
• Bleeding from your vulva.
• An open sore area.

Where can I find out more?

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• Cancer Research UK
• The Eve Appeal

Overview

The menopause is a natural process that can affect people physically and mentally in a whole range of different ways. In this section we’ll look at what exactly we mean by the menopause and perimenopause, how they can affect your vulva, and what they might mean for your vulval lichen sclerosus (LS).

What is perimenopause?

Perimenopause is the period of time leading up to the menopause, when your ovaries have fewer eggs and stop producing the same amount of hormones. It can last anything from a few months to ten years and the hormonal changes can cause irregular periods and a whole range of other symptoms. These often include hot flushes, night sweats, difficulty sleeping and changes in mood.

How the menopause affects your LS

The symptoms of GSM can be the same as the symptoms of LS (itching, soreness, dryness and painful sex). It’s not unusual to have both conditions, and some people with well-controlled LS notice their symptoms get worse during perimenopause and menopause. This might be because they’ve also developed GSM, or it might be because they’ve developed some incontinence (leaking pee) that’s causing flare-ups in their LS.

The perimenopause or menopause might also be the first time someone’s vulval LS gets diagnosed. This could be because GSM makes their LS symptoms more noticeable, or it could be because they’re struggling with a whole range of symptoms, so they get examined and diagnosed.

It’s always important to discuss any new symptoms with your doctor and to be examined to make sure you’re on the right combination of treatments for you.

Overview

Urinary incontinence is when pee (urine) leaks from your bladder when you don’t mean it to. It’s very common, especially after childbirth and after the menopause, but it’s not just a part of ageing that you have to put up with. In fact, in most cases it’s very treatable.

There are two main kinds of urinary incontinence – stress incontinence and urge incontinence. In this section we’ll look at what each one means, how they might affect your vulval lichen sclerosus (LS), and what treatment and lifestyle changes might help.

What’s the link between vulval LS and incontinence?

We know that people who have vulval LS are more likely to have urinary incontinence than people who don’t have LS. We’re not yet sure of the reasons for this, but it might be that the leaks of pee, however small, cause inflammation in the vulval skin which then triggers the development of LS in people who are susceptible.

It can also be harder to treat vulval LS if you have urinary incontinence because topical treatments can be washed off, soaked up by pads, or wiped away because you’re going to the toilet more often. Even so,nobody should have to accept incontinence without knowing what’s causing it. In most cases it’s very treatable, and resolving the problem will make a huge difference to keeping your LS under control.

Simple changes that can help with incontinence

As well as talking to your doctor, there are a few changes you could try at home which might help to improve your continence and reduce leaks.

Some people notice that they’re sensitive to caffeine and that they have fewer leaks when they cut it out of their diet. Cutting down on alcohol and maintaining a healthy weight can also help.

If you have stress incontinence, pelvic floor exercises can help to strengthen the muscles that support your pelvis and control leaks.

Resources

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The NHS  has advice on how to do pelvic floor exercises, and other simple lifestyle changes. You could also ask your doctor about referring you to a pelvic floor physiotherapist.

Overview

If you’re pregnant, or planning to have a baby, you might be wondering how your vulval lichen sclerosus (LS) will affect your pregnancy and birth – and how they’ll affect your LS.

In this section we’ll be looking at LS treatment during pregnancy, how LS might affect your birth choices, what you can do to get ready, and the kind of conversations it’s important to have with your midwife.

Is my LS likely to get worse… or better?

Again, there have only been a small number of studies into how LS is affected by pregnancy and birth, but the evidence so far is relatively positive. In one study which included 85 people, 65 had stable LS throughout pregnancy, 12 saw an improvement in their LS and only 7 said their LS became worse.

One of the real positives about pregnancy and LS is that, for people who’ve been living with undiagnosed LS, it can be an opportunity to finally get a diagnosis. Regular pregnancy examinations by doctors, nurses and midwives provide opportunities for you to talk about any symptoms you’ve been struggling with and, if necessary, get a referral to a specialist.

Can I have a vaginal birth if I’ve got LS?

Yes. Lots of people with LS have vaginal deliveries and, in the studies so far, only a small number needed a caesarean section instead. This might be because their LS symptoms were more severe, or their LS had progressed into more complex structural changes. If your LS is relatively calm, you’re likely to be able to have a vaginal birth, if you want one.

Of course, even in people who don’t have LS, tearing during a vaginal delivery is very common. In fact it happens in around 90% of first births. If you’ve got LS, there’s a possibility it might reduce the elasticity and stretchiness of your vulva and vaginal opening, making your skin more fragile and more likely to tear. Your LS might also mean it takes you longer to recover, but your doctors, nurses and midwives should be able to support you through this.

Over a third of vaginal births in the UK also involve an episiotomy, where a doctor or midwife needs to make a small cut in your perineum (the area between your vaginal opening and your bottom) to help the baby come out more easily if this is proving difficult. You’ll be stitched with dissolvable stitches but again, you might find your LS makes your recovery a little slower.

If you have an episiotomy or a tear, it’s really important to keep using your topical steroid, helping your skin stay as calm as possible while your body heals and repairs.

What if my midwife doesn’t know about LS?

Unfortunately, some midwives don’t know about vulval LS, or don’t know a huge amount about the condition. We’re working hard to raise awareness, so pregnant people with LS can get better, more tailored support from their whole healthcare team.

In the meantime, ask your midwife how much they know about LS and talk to them about how it affects you day to day. You can point them towards this website too, giving them an easy way to find out more about the condition and the care you need.

Will my LS get worse after the birth?

It might and it might not. Sometimes people report having more flare-ups while their body’s recovering from a vaginal birth, and if you’ve had tearing or an episiotomy, you’re likely to experience some pain and discomfort in the first few weeks. But this doesn’t happen to everybody, and it won’t necessarily be the case for you.

Whatever happens, keep up your topical steroid treatment and remember that your midwife, local health visitors and GP are there to support you. It’s completely normal to have plenty of check-ups and check-ins after you’ve had a baby. These might include home visits, appointments at your local GP surgery or health centre, or drop-in sessions for new parents where you can talk things through and get advice.

Overview

There are lots of conditions that can affect your vulva, and they often have the same symptoms as vulval lichen sclerosus (LS); things like itching, soreness and painful sex.

That’s why it’s so important to be examined by a healthcare professional who knows how to properly check your vulva, or who can refer you on to someone else if they’re not sure.

In this section, we’ll look at some of the conditions most commonly confused with LS, so you can have more confident conversations with your doctor.

The conditions we cover here are:

• Thrush
• Vulval eczema
• Lichen planus

Vulval eczema

Eczema (also known as dermatitis) can affect the skin on any part of your body, including your vulva. The skin becomes dry, itchy and sore, and struggles to maintain its natural barrier function. This can make it more susceptible to irritation or infections like thrush. Often people already have eczema elsewhere, but sometimes it only affects the vulva, which makes it harder to diagnose.

Eczema flare-ups can be triggered by an allergy to something you’re using on your skin (like wet wipes or shower gels) or something irritating your skin (like hair removing creams or pee). Sometimes the itch is so severe that the skin thickens to protect itself from repeated scratching, and this can cause a change in its texture and colour.

Where can I find out more?

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• NHS information on eczema
• Helpful information from Eczema Care Online