Information for carers and partners of people with vulval lichen sclerosus

Information for carers

Whether you’re caring for a parent, partner, family member or friend, or you work professionally as a carer, looking after someone with vulval lichen sclerosus (LS) isn’t always easy. In this section, we take you through some practical tips and suggestions you can use when you’re helping them.

If the person you’re caring for is visually impaired, has mobility issues or is elderly, you might need extra support to give them the best care for their condition, so we’ve also included recommendations for taking those next steps.

Understanding vulval LS and vulval care

If you’re caring for someone with vulval LS, it’s really important to have a good understanding of what the condition actually is. If you’d like to find out more about it, we’ve put together an easy-to-understand guide.

It’s also really important to make sure someone with LS avoids potential triggers for their condition. Vulval skin can be delicate and it may need a different hygiene routine than skin on other parts of the body. For example, if someone has problems with incontinence, this needs to be properly managed, otherwise it may cause painful and distressing flare-ups.

Read about the best way to look after vulval skin, and manage incontinence.

Treatment

Getting the right treatment is one of the most important parts of managing LS and minimising discomfort. For most people, it involves using topical corticosteroid ointments, which are gently smoothed onto the skin.

The person you’re caring for might need help sticking to their treatment plan, which might mean reminding them when and how to apply their ointment. We’ve created a treatment plan template, which might be a useful way to document their routine, with the help of their doctor.

Treatment plan template (PDF, 244kB)

If they’re elderly, have difficulties with mobility or can’t see well enough to apply the ointments themselves, you might need to do it for them. If so, you’ll want a good understanding of how much to use, where exactly to apply it and how often. Their doctor, nurse or consultant should be able to explain this, so you feel clear and confident about what you’re doing.

You might find our information on steroid treatments and the anatomy of the vulva helpful, but if you’re not sure, check with your loved one’s doctor, nurse or consultant so you feel clear and confident about what you’re doing.

If the person you’re caring for wants or needs to take a shower or bath before using their ointment, you might find they need your help to do that too.

Managing symptoms

As well as helping them follow their treatment plan, you might also need to support the person you’re caring for with managing their symptoms, especially if they’re newly diagnosed, starting a new treatment or experiencing a flare-up.

If they have active cuts or fissures, it might sting when they pee. If so, using a gentle stream of warm water to dilute the pee as it comes out can make a big difference. A peri bottle can make this easier, and is also a good way to gently rinse any pee off the skin afterwards.

Applying a fragrance-free emollient moisturiser, (preferably an oil-based ointment) can help soothe, protect and moisturise the skin. Emollients can be used as often as necessary, but ideally at least twice a day, and at least 20 minutes after steroid treatments (to give the steroids time to absorb). It’s often helpful to keep emollients in the bathroom, so they can be reapplied after showers, baths or using the toilet.

Read more and watch our video about applying topical steroids and emollients.

It’s also common for people with LS to develop constipation, so try to make sure the person you’re caring for is well hydrated and eats plenty of high-fibre foods. If you think constipation is becoming a problem, you might need to talk to their doctor, nurse or consultant about laxatives or medicines to soften their poo. If pelvic floor dysfunction seems to be contributing to the constipation, they might also be referred to a pelvic floor physiotherapist.

Vulva checks

Once a month, it’s a good idea for people with LS to have a vulva check. If that’s something the person you’re caring for can do for themselves, you might just want to remind them when it’s time. If they’re unable to check themselves, you’ll need to do it for them, with their understanding and consent.

A vulva check involves examining each part of the vulva, including the mons pubis, clitoris, labia majora and minora, vestibule, vaginal opening, fourchette, perineum and perianal skin. Look for changes in colour or texture, for example new moles or dark spots, growths, cuts or fissures, a new patch of thicker skin, or new loss of pigmentation (where the skin loses colour). If you see any changes, note them down and let their doctor know.

Read more and watch our video about vulva checks.

Looking out for flare-ups and complications

When you’re doing a vulva check, or any time you’re helping the person you’re caring for wash, dress or go to the toilet, keep an eye out for signs that their LS is flaring up, or any complications like bleeding, tearing or infection. If you see anything you’re worried about, talk to their doctor.

Likewise, if their pain is intense or increasing, tell their doctor and ask about options for pain relief.

Quality of life and overall wellbeing

Living with LS can be challenging, so try to stay optimistic when you’re with the person you’re caring for. If you can, encourage them to exercise, get a good night’s sleep and try techniques for easing stress or anxiety. If you notice their mental health seems to be suffering, talk to their doctor and consider looking for a therapist, counsellor or support group.

Respect and open communication

However challenging your role as a carer might be, try to always respect the privacy and dignity of the person you’re helping. Discuss sensitive topics in a compassionate way and help them feel in control of their own healthcare decisions. Think of yourself as a partner in their health and wellbeing – be there to work with them, support them and empower them.

Appointments

You might need to help the person you’re caring for get to and from their medical appointments, whether they’re seeing their GP, nurse, dermatologist, gynaecologist, pelvic floor physiotherapist or someone else. Be an advocate for them, whatever the healthcare setting, by asking questions, reporting concerns, seeking clarification and making sure they get the medical care and support they need.

Support for you

Caregiving can be difficult at times, and it’s important to take care of yourself, so you can look after the people who rely on you. Try to carve out some time to rest and relax when you can, and if you feel you need some support, don’t hesitate to reach out. There are all sorts of carer support groups that meet online, or in person, and we’ve included some resources at the end of this page to help you.

Asking for extra help

If you’re looking after a loved one who’s visually impaired, has mobility issues or is elderly, caring for them at home can be even more challenging. But you don’t have to do everything on your own. If you feel you need help with their care, or their needs are becoming greater, talk to their GP or consultant, or get in touch with a carers’ charity or organization. We’ve included some resources at the end of this page to help you.

Information for partners

Vulval lichen sclerosus (LS) doesn’t just affect the people who have it. For partners especially, it can be a difficult condition to understand, putting extra pressure on relationships, communication, sex and intimacy.

But if your partner does get an LS diagnosis, they’ll need your support and understanding. That’s why it’s so important to find out about the condition, get to know how your partner might be feeling, and take good care of the relationship between you.

To help you do that, we’ve worked closely with people who have vulval LS, and in this section, we’ll be sharing their advice on supporting your partner.

Getting a diagnosis

If your partner has symptoms that could be LS, it’s important they get a proper diagnosis, so they can be prescribed the right treatment and start feeling better. You’ll find lots of advice on how that process works in our Getting a diagnosis section.

Getting an LS diagnosis can be upsetting. While your partner might be relieved to know what’s wrong, they’ll also be learning about a condition they’ll have to live with long term. LS can’t be cured, and although treatment can be effective at controlling symptoms, it isn’t something they’ll be able to forget about entirely.

Most people with a new diagnosis also want to research their condition online, and your partner might find the images they see distressing. They’ll also learn that people with vulval LS have a slightly higher risk of vulval cancer. While this only happens to a small number of people, it’s natural that your partner might find this very frightening.

While all of this is sinking in, your partner might be tearful and distressed. They’ll need you to be supportive and reassuring, and the more you understand LS, the better you’ll be able to do that.

Educating yourself about LS

One of the best things you can do to support your partner is take the time to learn about LS. Our website’s been created by doctors, researchers and most importantly, people with LS, so exploring the different sections will give you a better idea of what life is going to be like.

We’ve included advice and information on:

But one of the most important things to learn is what LS really feels like for your partner. Some people describe the pain as being like someone holding a flame to their vulva, and the itching as being like chickenpox. Everyone’s different, so ask your partner what it’s like for them; listening and making them feel understood is hugely important.

Sex and intimacy

Lots of people with LS still enjoy an active sex life, whatever that looks like for them and their partner. Some are able to carry on as they always have, while others find that making some changes or trying new things really helps.

However, for many people, LS makes sexual intimacy difficult, and the pain, discomfort, tearing or bleeding they experience means they just don’t want, or feel able, to do it. Even very gentle touching, stimulation or penetration can for some people be extremely painful, not just at the time, but for days afterwards. This might only be the case during a flare-up, or it might be in between flares as well.

It’s not their fault, and it’s not yours, but it can still be very difficult to talk about. The loss of intimacy and feelings of guilt or shame (from both sides) can put a strain on relationships, so it’s important to talk to each other, be patient and respect your partner’s boundaries.

If your partner is finding sex too difficult at the moment, it’s understandable for you to be upset too. Try to remember that while you might be distressed by it, your partner will be feeling all of that on top of the everyday pain and discomfort of LS. They may be also feeling they’ve let you down, or be struggling with their self-esteem or body image.

Give them (and yourself) time. When their symptoms are more under control, they may feel ready to be more intimate again. If they do, lubricants and condoms can help to minimise friction, discomfort and the risk of infection. But remember, sex doesn’t have to be about penetration, and intimacy doesn’t have to be about sex. Even if they don’t want to try again, you can still explore alternative ways to be close to one another and make each other feel good.

Find out more about sex and LS.

Being in it together

While it won’t cure LS, having a healthier lifestyle can be helpful, and that’s always easier to do when you do it together. Trying to take regular exercise, eat a balanced diet and reduce stress are things both of you can get involved in – and feel the benefits from. So try to be positive, encourage these healthy steps and celebrate the small victories you both achieve.

You can also help by being aware of what triggers your partner’s symptoms and making simple switches to things like the soaps and detergents you use at home.

Going to appointments

Like with any medical condition, having someone by your side at appointments can make a big difference, so talk to your partner about whether they’d like you to be there with them. If so, make it a priority to go to as many appointments as possible, so you can understand what’s happening, ask questions and give them the support they need – on the day and afterwards.

Read more about diagnosis, referrals, check-ups and support.

Helping with treatment

Your partner might be completely able to take care of their own treatment, staying on top of their treatment plan, checking their vulva, and applying their steroid creams and emollients. But if not, they might need you to help. Talk to them about how they’re feeling and coping, offer to help if they’d like you to, and listen to them and their doctors so you feel confident about what to do.

Find out more about treatment.

Dealing with flare-ups

Even if your partner’s LS is well under control, flare-ups in their symptoms can happen, and they can be extremely uncomfortable, painful and distressing. When this happens, your partner might not feel able to go out, and prefer to stay at home where they’re more comfortable. They might also find it eases their symptoms to go without underwear.

Everyone’s different, so find out what makes your partner feel better and how you can help. It might be that they’d love you to run them a warm bath with epsom salts, give them an ice pack wrapped in a soft towel, get them an antihistamine or just cuddle them on the sofa.

Getting support, for both of you

It’s natural for LS to put new pressures on you both individually and as a couple, so if you need some support, don’t be afraid to reach out. Talking things through with someone else can help you see things from new perspectives, discover new coping strategies and build resilience. Many people with LS also find psychosexual counselling (also known as sex therapy) helpful.

Ask your GP about counselling or support groups, or look for a recommended counsellor you can talk to locally or online. To make sure you’re in good hands, look for someone with accreditation from the British Association for Counselling and Psychotherapy (BACP).