Everyday life with vulval LS

Moisturising

Using an emollient moisturiser regularly is a good way to help protect your vulva’s delicate skin, forming a barrier against irritants like sweat, friction and pee.

Unlike ordinary moisturisers, emollients are specifically designed to soften and soothe dry skin conditions. They’re also unperfumed, so they’re less likely to add extra irritation. They come in different forms, including lotions, gels, creams and ointments:

• Lotions and gels: very light, providing the least moisture
• Creams: thicker and more moisturising
• Ointments: thicker and greasier, even more moisturising, for maximum protection

It’s completely up to you which emollient you use, and you might need to try a few before you find one that suits your skin. It’s worth remembering that lighter gels and lotions often contain more preservatives than thicker creams and ointments, so they can be more irritating. Your GP, specialist, or local pharmacist will be able to suggest emollients for you to try.

How do I use my moisturiser?

If your emollient comes in a tub (without a pump), make sure you scoop it out with a clean teaspoon or spatula instead of your fingers, to avoid contaminating the rest of the tub. Smooth the emollient over your skin with your fingers and gently rub it in. If your skin is very sore, you might find a spray moisturiser works better for you instead.

You can use your emollient as often as you need to. Twice a day is a good place to start, but settle on a routine that suits your own schedule and skin. Some people find it helpful to apply emollient before exercising to reduce friction, or before going to the toilet to avoid stinging if the skin is broken or irritated.

How do I use my moisturiser with my topical steroid?

While emollients help to soothe and protect your skin, if you have LS, your doctor will also prescribe a topical steroid ointment to treat your symptoms. You can find out lots more about them in our steroid treatment section.

Ideally, apply your steroid ointment, then leave a 20 minute gap before using your emollient. That gives the steroid enough time to be absorbed into your skin and start working. If you find it’s not practical to wait that long, you might prefer to just apply the steroid ointment, then use the emollient at a different time of day.

Do emollients have side effects?

It’s very unusual for emollients to cause side effects, unless you’re allergic to a specific ingredient, which doesn’t happen often.

If you’re worried about allergies, you could try applying your emollient to a small patch of skin elsewhere on your body (such as the inside of your arm) and waiting for three days to check it still feels comfortable. If your emollient irritates your skin, either when you’re trying it out or later on, it’s a good idea to switch to a different one. There are lots of options available, and your local pharmacist will be able to recommend something.

It’s important to remember that emollients contain oils which are flammable, even when they’re dry, and this can make your clothing or bedding flammable too. So, while you’re using emollient treatments, be very careful near naked flames or lit cigarettes. For more information see  Government information about flammable emollients (PDF, 1.5MB) (opens in new tab).

Washing

Lots of shower gels labelled gentle, sensitive, or dermatologically tested still contain soap, so they can be irritating on your sensitive skin. Washing your vulva with an emollient instead can be a good way to avoid extra discomfort and gently moisturise while you wash.

Try mixing some of your emollient moisturiser with warm water in your hands, as if you were lathering soap, then use it to wash your vulva. It’s best to use your hands rather than a cloth or flannel, because they can cause friction and irritate delicate skin.

Some people find that even the runoff from their shampoo or a shower gel they’re using on other parts of their body can irritate their vulva in the shower. If this happens, you could try applying some emollient to your vulva before you get in the shower to act as a barrier, or washing your hair separately over the bath or sink.

How often should I wash my vulva?

Washing your vulva once a day is usually enough. In fact, washing too much can cause dryness and irritation. If you feel you need to wash more often, for religious or other reasons, try to use an emollient moisturiser instead of soap or shower gel, or apply your emollient after washing to soothe your skin.

Remember, when you’re drying, be gentle. Use a soft towel and lightly pat your skin dry.

Going to the toilet

If it stings when you pee or poo, the tips below may help you.

It might help to apply your emollient before you go to the toilet. Try unbleached, chemical-free toilet paper made from recycled or bamboo fibres. If you’d like to clean your skin afterwards, try a gentle cotton pad moistened with tap water.

Peri bottles can also be helpful if this is a problem for you. If you’ve never used one before, they’re small, handheld plastic bottles with a long neck and nozzle, and they’re sometimes used after childbirth or surgery to clean the vulva and around your bottom with a gentle squirt of warm water instead of toilet paper. The word ‘peri’ comes from perineum, which is the area between your vagina and bottom.

As well as using your peri bottle to clean your vulva and around your bottom, you can try using it while you’re actually peeing too. By squirting warm water towards your urethral opening, you’ll dilute the pee, making it less likely to sting your skin. If you’re not sure where that is, there’s lots of help in our section on the anatomy of the vulva.

Once you’re done, use a clean, soft cotton cloth to pat your skin dry.

It’s important to note that using a peri bottle on your vulva is different from vaginal douching, which squirts water right inside the vagina. Douching isn’t recommended because it can increase the risk of infections.

Pubic hair

Pubic hair helps to protect your vulva, but hair removal is a personal decision. Some people have cultural or religious reasons for doing it, while for others it’s about feeling comfortable with the way their bodies look and feel.

If you do remove any, or all, of your pubic hair, you might notice that some removal techniques make your LS symptoms worse. That’s often because of the friction or chemicals involved. Trimming, laser hair removal and sugar waxing tend to cause less irritation than other techniques.

If you do opt for waxing or laser hair removal, it’s best to wait until your symptoms are calm and you don’t have any cracked skin or sore patches.

Dealing with itching

If your LS leaves your skin feeling itchy, antihistamine tablets can often help, and taking them before you go to bed can be a good way to get a more restful night. Some people also find that putting a pillow between their knees in bed improves airflow and relieves itching. Bedding made from natural fibres can be gentler on your skin, and if you think you’re scratching in your sleep, wearing cotton gloves can help too.

Cold compresses (like a soft flannel or cotton wool pad soaked in cold water) can also help to relieve the itching sensation. Some people find that soaking in the bath soothes their skin, but others find this dries it out, so see what works for you.

Psychosexual counselling and how it can help

Research shows that when people are given therapy focusing on both their mental and sexual health (known as psychosexual counselling) they experience much better improvements in their sex lives, overall happiness, and the way they feel about themselves.

That’s why we recommend asking your GP or consultant about psychosexual counselling options. Unfortunately, this kind of counselling isn’t always available or accessible on the NHS, so if your GP’s unable to help, you may need to look for a private practitioner.

Low libido

Libido refers to your spontaneous desire for sexual activity. It can be affected by all sorts of things, including the way you’re feeling physically and mentally. While some people with LS experience changes to their libido which mean they don’t want to have sex anymore, others feel differently and find ways to continue being intimate.

If you’re experiencing low libido and it’s impacting your quality of life, talk through your options with your GP. Ideally, they’ll explore both the physical and mental reasons why this might be happening. If they uncover a biological reason for your low libido, they might prescribe treatment such as hormones. If they think there’s a psychological cause, they might also recommend counselling.

If you have counselling, your counsellor might talk about techniques like sensate focus, where partners explore each other’s bodies through touch, focusing on pleasure without any pressure to perform, stick to old patterns, or do what they feel they ‘should’ be doing. They might also encourage you to try mindfulness practice, which has been shown to be helpful for people with sexual pain and low libido.

Feeling pressure to have sex

Having vulval LS doesn’t necessarily mean you have to stop having sex, whether that involves penetration or not. It’s a completely personal choice. And whatever decision you make, it doesn’t have to be forever. As your symptoms change, your feelings about it might too. The important thing is that you feel comfortable, both physically and mentally.

However, we know that sometimes people who find sexual activity painful still carry on doing it, despite the discomfort they feel both at the time and afterwards. This can be because they feel guilty about not wanting to, or feeling able to, have sex their partner. If this is happening to you, it’s really important to remember that nobody should ever feel pressured to have sex, whether it’s painful or not.

If you can, try to talk to your partner about what you’re experiencing. It’s likely they’ll feel unhappy knowing they’ve caused you pain, and appreciate you being honest with them. Let them know which aspects of sex you’re finding difficult, whether it’s pain from certain types of touch or penetration, or feeling distressed about the changes happening to your body. Sex encompasses all sorts of ways you can be intimate with each other, so  be open to trying something different and keep talking to each other about how you’re feeling.

If you feel unsafe in your relationship, please reach out for help. Domestic violence charities like Refuge support thousands of people every day, and they can help you too.

Clitoral fusion and lack of sensation

Even if there’s fusion over the hood of your clitoris, it’s important to know that you can still have an orgasm (climax).

Fusion can happen when the hood of your clitoris partially or completely scars over and sticks to the head (that’s the roughly pea-sized visible part, also known as the glans). But if you feel this fusion is causing a loss of sensation and problems with sex, there are treatment options you can explore. This might include removing scar tissue and separating the hood from the head to help restore sensation.

To find out more about different treatments, take a look at our section on LS in the long term.

Pain when you have penetrative sex

We know that some people with vulval LS experience pain when their vagina is penetrated, whether that’s by their partner’s penis, or by fingers or sex toys.

Even though LS pain tends to be felt in the vulva, which is on the outside of your body, sometimes you might feel pain in your vagina (the internal part) too.

Sometimes this is caused by tight pelvic floor muscles, because the persistent pain of LS can mean these muscles tighten up as a protective response. Unfortunately, this tightening makes the pain worse, causing discomfort during and after some sexual activity.

If you’re experiencing this, it can help to see a pelvic floor physiotherapist. They should be able to give you an assessment and a treatment plan, which might include muscle release work, using a dilator to very gently stretch your vagina, or breathing exercises.

It’s completely understandable to feel concerned about the impact of LS on your sex life or relationship, but try to remember that sex doesn’t have to be about penetration. You can have a pleasurable sex life in other ways, so try to keep an open mind and explore what’s possible.

Tearing during sexual activity

When you have LS, your skin can be delicate and easily damaged, so the friction that often happens with sex can lead to tearing.

If this happens to you, it’s really important to follow your treatment routine so your skin can repair and recover as quickly as possible. You can find more advice in our section on how LS can progress.

To reduce the chances of tearing, you might want to experiment with different positions, or touching each other in different ways. Some people find certain things more comfortable than others, and less likely to cause tearing. Using lots of lubrication can be helpful too. Everyone’s different, so see what works for you.

Why doesn’t my doctor ask about the impact of LS on my sex life?

People often feel that their doctors neglect the impact of LS on their sex lives, and there could be a few different reasons for this.

We know that, in general, doctors don’t like to ask about something which they’re not sure how to help with. For example, if they know that the waiting list for psychosexual counselling is very long, they might not want to raise it with you. On top of this, they might not want to embarrass you, they might feel embarrassed themselves or they might be worried about cultural inappropriateness.

Even so, you have the right to raise the topic yourself and ask for help. It’s up to your doctor to try to provide whatever support, advice and referrals they can.

Overview

Periods (also known as menstruation) are a normal, regular part of the lives of many women and people assigned female at birth.

Each month (or thereabouts), the lining of the uterus sheds and menstrual blood leaves the body through the vagina. It’s a natural process experienced by around 800 million people on any given day. But if you have vulval LS, your periods could bring extra challenges, including symptom flare-ups.

In this section, we’ll look at how your vulval lichen sclerosus (LS) might be affected, the symptoms you might have, how your period might affect your treatment and which period products can help.

How do periods affect LS symptoms?

Everyone’s different, and your periods might affect your LS in a different way to other people. Some people say they feel better during their period, while others say it increases their symptoms.

If you find that your symptoms get worse when you’re on your period, you could try:

• Using a peri bottle filled with warm water to gently rinse the blood from your vulva a few times a day
• Soaking in a warm water bath a couple of times a day
• Using an ice pack wrapped in a soft towel (or through your clothes) to ease soreness, pain and itching
• Wearing loose, breathable clothing
• Prioritising rest and relaxation

If you’re having very heavy periods or they regularly trigger a flare-up of your LS, talk it through with your GP, practice nurse or consultant. They might suggest treatment options to lighten or shorten your periods.

How does my period affect my LS treatment?

During your period, it’s completely fine to carry on with your treatment as normal. We know some people worry that their menstrual blood will dilute their topical steroid, but if you smooth in the ointment for about 60 to 90 seconds, most of it will have absorbed, and it will be able to work properly.

Which period products work best for LS?

We don’t recommend pads or panty liners because they’re known to easily irritate the delicate skin around your vulva. There are lots of good, more comfortable options available, including

• Period underwear
• Period discs or cups
• Unbleached, unscented tampons

Overview

When you have vulval lichen sclerosus (LS), finding something comfortable to wear can be tricky, especially during a flare-up. So, in this section, we look at what kind of clothing might irritate your LS, and what might work better.

There hasn’t been a lot of research about clothing and LS, so we’ve based our suggestions on the expertise and experience of patients and health professionals.

Everyone’s different, and what works for some people might not work for you. The most important things to remember are to choose natural materials as much as possible, and avoid bulky seams around your vulva.

Underwear

Try to choose underwear made from 100% cotton, bamboo, silk or other natural materials as often as possible. Think about what shape feels comfy for you too; thongs and other tight-fitting styles are much more likely to irritate sensitive skin.

Sometimes the best underwear is no underwear. When you have a flare-up, wearing no underwear (for example under a long skirt, dress or loose trousers) can be helpful. It might take a bit of getting used to, but it’s a good way to ease your symptoms, so try it around the house or wherever you feel comfortable.

Trousers and tights

Sometimes jeans or trousers with a stiff or chunky seam can rub against your vulva and cause soreness or irritation. Trousers made with synthetic materials can also make the area feel generally hot and irritated. You might find loose trousers, leggings or very soft jeggings without a bulky inside seam are more comfortable, helping to keep your LS calm.

Tights are often made from synthetic materials, so they can be irritating too. Look for options made from natural materials like bamboo or cotton instead. They’re less likely to upset your skin and you can usually find them in the same sections of the shop as standard tights.

When you’re exercising, you might want to consider a pair of loose shorts or yoga pants instead of tight leggings.

Staining from treatment

Sometimes people find their ointment stains their clothes. If this is happening to you, we know it can be an unwelcome reminder of your LS, as well as an annoying ongoing expense.

So, to protect your clothes, we recommend putting on absorbent period underwear (also called period pants) after you’ve applied your ointment. If your treatment routine means you only use ointment on certain days, you could also pick one or two items of clothing to wear on those days, helping to keep the rest of your clothes stain-free.

Washing your clothes

If your skin is sensitive to fragrance, try to avoid highly fragranced laundry detergents and fabric softeners. These days there are lots of fragrance-free options, and they’ll usually be gentler on your skin. You might also find that sometimes a very hot wash with no detergent is enough to get your clothes clean. Just make sure you check the labels first to avoid shrinking.

Overview

We all know exercise is good for us. It helps us keep fit, relieve stress and boost our wellbeing. So it’s good to know you don’t need to stop being active just because you’ve got vulval lichen sclerosus (LS).

Whether you already exercise a lot, there’s a particular activity you enjoy, or you’d like to start exercising for the first time, there’s lots you can do to exercise more comfortably with LS. In fact, most exercises can be adjusted slightly to make them more suitable. In this section we’ll take a closer look.

General tips

• Every body is different so listen to yours; don’t do anything that doesn’t feel right.
• Don’t overdo it; build up gently.
• During flare-ups you might want to do less exercise, or stick to upper body work.
• Find exercise clothes that work for you and don’t rub or irritate.
• Change out of sweaty clothes as soon as you can.
• After exercise, have a brief shower (or cleanse your vulva with moist cotton wool and emollient) to wash off any sweat, then reapply your emollient.

Walking

• Use an emollient as a barrier to reduce friction and protect your vulva.
• Build up slowly; take shorter walks at first.

Swimming or other water sports

• Use an emollient before swimming to protect your vulva.
• Have a shower afterwards to wash off any irritants, then reapply your emollient.
• Change out of your wet swimwear as soon as you can.
• Avoid wearing wetsuits for long periods of time.

Cycling or horse riding

• If you feel uncomfortable on your saddle, try switching to a wider padded one.
• Try cycling underwear, shorts or leggings with added padding.
• Try to avoid clothing with seams in the middle.

Yoga

• Yoga’s about listening to your body, so it’s a great option if you’ve got LS.
• Your teacher will usually give options for every pose, so you can do what feels right for you.
• If you’re not happy with a pose, lie back and focus on your breathing or try a different one instead.
• If it’s uncomfortable, avoid or modify poses that open up your vulval area, for example hip openers like warrior or happy baby.

Weights and gym work

• Don’t overdo it; build up slowly.
• To begin with, try focusing on your upper body and core.
• If they’re uncomfortable, avoid lower body exercises that open up the vulval area, like squats.

Overview

Everyday life with vulval lichen sclerosus (LS) isn’t always comfortable or easy, and over time that can have an impact on the way you feel, and the way you relate to others.

But if you’re feeling anxious, depressed or isolated, you don’t have to settle for feeling that way. Help is out there, and in this section we explore different things you can do to start feeling more like yourself again.

Talking to other people

We know that for lots of people with vulval lichen sclerosus (LS), it’s not easy to talk to others about their condition, especially when it affects such a personal part of their body.

Awareness about LS (and other vulval conditions) in the general public is thought to be quite low. That means people who have it often feel they’ll have to explain it in detail, which can be an embarrassing prospect. And even if they do explain, other people might not really understand. 

We know this can leave some people with LS feeling isolated or lonely, especially if they need to say no to social invitations and stay at home during flare-ups.

But there are people you can talk to. There are LS support groups online (including on Facebook), or there might be a group in your area that meets up in person or online. A lot of people find that talking to others with similar experiences can be really empowering, and research suggests that fostering connectedness online could be helpful for people with long-term conditions.

However, keep in mind that through support groups you might encounter difficult and sad stories, as well as uplifting and useful ones. Remember that everyone’s different, and just because someone else has a difficult experience, it doesn’t necessarily mean you will too.

Looking after your emotional wellbeing

We know that having a vulval condition can affect your emotional wellbeing. Long-term conditions can often make people feel their sense of self and identity has changed. And when the condition is poorly understood, feels so personal and causes a sense of loneliness, that can be even worse.

There’s good evidence that psychosexual counselling can help , but this doesn’t address every difficult aspect of living with LS, and it’s not accessible to everyone.

We also know that physical activity can help improve the wellbeing of people with depression and anxiety. It’s completely understandable that not everyone wants to exercise, or is able to, but even very small changes can make a big difference to the way you feel.

If you’d like to get started or get back to physical activity with LS, our exercise section has lots of suggestions to help you feel more comfortable and confident.

There hasn’t yet been a lot of research into what improves the mental health of people with vulval LS, but getting your condition under control might be the first step to feeling more like yourself again. Talk to your GP, practice nurse, or consultant about how it’s affecting you, and ask for support if you need it.