Understanding Lichen Sclerosus: Symptoms & Management

Lichen sclerosus (LS) is an itchy, dry skin condition that eventually can seal vaginas over with fusing, leaving the vulva whitened and scarred.

Lichen sclerosus is frightening, there is little doubt, however, there are some ways to manage the condition. Some people live completely symptom-free with some key changes to diet and lifestyle, and the additional use of a range of moisturising and protecting creams and other strategies.

LS is usually found in the genital area, though it can affect other areas including the mouth. It presents on the vulva and anal area, with white patches, itching, cracks or tears, bruises and scars.

The skin sometimes fuses together, narrowing the vaginal opening. Sexual activity may be uncomfortable at best, impossible at worst.

LS occurs in one in 70 biological females, often pre-puberty or postmenopausal when oestrogen is low, but it can happen any time.

LS is believed to be an autoimmune disorder and is related to autoimmune thyroid disease, alopecia areata, vitiligo, pernicious anaemia, and lichen planus (LP).

In LS, there are high numbers of antibodies circulating in the body offering some clues. Extracellular matrix protein-1 (ECM-1) antibodies are found in 60–80 per cent of those with vulval lichen sclerosus.

Symptoms of lichen sclerosus on the vulva

Itching, sometimes quite severe, chronic or intermittent
Pain or discomfort
White spots on the skin (may be smooth)
Wrinkly, blotchy patches
Thickened skin on the vulva or anal area
Crinkly skin
Pale skin
Split skin, due to itching
Easy bruising
Easy tearing
Bleeding
Blisters
Constipation
Ulcerated lesions
Painful sex
80 per cent of LS is genital, but it can appear in other areas
Scarring, loss of labia minora, buried clitoris, closed introitus (vaginal entrance)

What does lichen sclerosus look like?

Each case of LS looks a bit different. Some cases can be extremely disfiguring, particularly if left untreated, and the skin can completely fuse over both the clitoral hood and the vaginal opening (introitus).

Complete fusing usually takes many years to develop, with treatment sought to delay and prevent this occurrence. The vulva appears whitened in areas, sometimes shiny, and can appear scarred. There can be small bumps and sometimes LS is mistaken for genital herpes.

LS never affects the actual inside of the vagina.

What about sex?

It is likely you will have no loss of sensation with sexual pleasure and orgasm is completely achievable. Naturally the more scarring and symptoms there are, the less penetrative sex is able to be successfully achieved.

The emotional carnage of LS is often worse than the disease itself, since not being able to have sex – or in fact use your vagina – is devastating.

Why does lichen sclerosus develop?

Nobody knows why LS develops but some suspected causes are autoimmune factors, unknown viruses, fungus or bacteria, hormonal imbalances and a genetic predisposition.

LS is likely contributed to by all of these elements in terms of symptom severity, and many of you find certain things improve symptoms.

In the face of a lack of scientific understanding of the cause of the condition, alleviating symptoms is the first priority, then optimising your body so it can defend itself from whatever it is that is modifying your body’s response.

Living with and managing lichen sclerosus

LS is a lifelong condition that will always need monitoring. It is important to understand that it may not get better quickly, your individual treatment response may be patchy, and things may be awful for a while as you figure it out with your healthcare professionals.

This is a great time to combine care with everyone you can get onboard and afford: doctors, specialists, naturopaths, acupuncturists, oesteopaths – try them all! Get all your health experts working hard for you in whatever way they do that best.

There is a lot you can do, try, and learn, but until you wrap your head around it, you will need as much care and information as you can get.

If everything goes utterly sideways – the worst-case scenario is a vulvectomy – don’t be scared to grieve for your losses. LS needs much more research and attention and outcomes can be devastating.

Get in early with all your practitioners, do your homework, and be the boss of your healthcare. Damage prevention is key, with remission the goal.

Lichen sclerosus and your emotional sphere

The emotional damage done by LS can be worse than the disease itself and needs your attention. Because LS can interfere significantly with your ability to be intimate with another person in a physically sexual way, it can really hinder romance and relationships.

But it’s not just that: LS physically damages your body, in an area that many of you are deeply unfamiliar with and embarrassed about. It can be hard to talk about, with symptoms like itching when you’re shadowed by shame.

Having someone you trust to talk to about how it makes you feel is crucial, as living with shame and guilt and self-loathing is psychologically poisonous. Life does continue, and learning to accept your disease and its many outcomes, while staying on top of it by caring for your body, spirit and relationships means adapting. This adapting means a level of acceptance that you can live with.

Guilt and shame, while often your companions, have no major place in an emotionally healthy person. Your emotional wellbeing keeps you healthier than anything else in this life, so get help, find support groups, and this cannot be overstated: try everything, and try it more than once.

How and when LS tends to start

Lichen sclerosus can start early in life with severe itching, fierce scratching, and the consequent raw flesh wounds. But, LS can appear at any time, signalling a causative agent combined with a susceptibility, rather than being born with it per se.

Usually when we are born with a condition (congenital) it shows up at key times in our development, not just at random.

As a young girl, LS can be confusing and embarrassing, resulting in depression and anxiety, for the symptoms may never completely go away, or they can abate for some years only then to return.

Once you add puberty, sex and relationships into the mix, it can easily result in tearing and bruising and the condition becomes more obvious and disruptive.

Treating lichen sclerosus

Steroid cream
Lasers
Light therapy
Energy-based devices
Borax solution application for labial fusing

What does the doctor say about lichen sclerosus?

A visit to the doctor often results in ‘you have an infection’, ‘don’t wear tight pants’, and a tendency to dismiss the condition as something other than LS. You may get written off.

Keep visiting specialists, gynaecologists, doctors until someone can not only diagnose you but treat you without inflicting more damage. LS – or at least the suspicion of – is usually obvious to a trained eye. If you think you have LS, say so, and find a doctor who is familiar with it.

Medical treatments for lichen sclerosus

Many people find relief in a variety of creams and ointments – corticosteroid ointment (CLOB), emu oil, coconut oil, and so on. Ask around, see what everyone else is using, and find one that works for you.

Everyone reacts differently, so try everything and speak to your vulvar dermatologist for advice.

Steroids

Topical steroids can slow the progression of LS symptoms but applied regularly they can be very damaging to skin and cause, over time, thinning of the skin. Thinning skin results in easier tearing and less overall skin strength and integrity.

Steroids are not a good long-term solution, but they can help to alleviate some symptoms temporarily, though they are used over the long-term in many LS patients.

Steroids may not work very well (or can aggravate the skin), but can be worth having on hand in case of a flare-up (if it does work) to help prevent damage from fusing and dryness.

Physical therapist and vaginal dilators

It is highly likely, depending on the severity of your condition, that you’ll be pointed in the direction of vaginal dilators to stretch your vaginal opening, with the help of a pelvic physiotherapist.

It is a good idea to get to LS before it gets this bad, because often once the damage is done, it is hard to undo.

Surgery for lichen sclerosus

Badly-damaged vulvar tissue can sometimes only be cleared away with surgery – a frightening concept, but one that can actually restore some normalcy to your vaginal area in some cases. The extent of the surgery varies depending on severity.

Surgery can open the vulva back up and allow for normal sexual experiences with a few snips and some stitches. The sensation usually returns fully and it can unstick some of the tissue.

Discuss this with your doctor or specialist. It’s not for everyone, and results vary significantly.

Naturopathic ideas for lichen sclerosus

Any condition that has roots in suspected autoimmunity is naturally difficult to resolve completely due to the unknown nature of the condition. LS is no different, but it sure isn’t impossible. People go into remission – it’s not impossible, but finding your secret sauce can be tricky and take a long time.

We suggest you try the borax solution at least for temporary relief from fusing while you find other solutions.

What is clear is that a complete diet overhaul can work wonders in reducing attacks, alleviating uncomfortable, painful or inflamed vulvar skin, and improving your body’s ability to return to ‘normal’.

You would be well advised to have an appointment with a qualified, LS-experienced naturopath in your area (or undertake a consultation online) to learn more about the way disease manifests and what you can do to at least manage symptoms.

There is always the hope that your LS will be the kind that spontaneously disappears with a little prodding!

Diet adaptations in lichen sclerosus

When fighting an unknown, it is of critical import to take a really good, hard look at your diet and probably make some adjustments.

Food really matters when you’re treating mysterious conditions, so get some advice and do your homework on the best anti-inflammatory autoimmune or elimination diets to try.

First step

After your diagnosis and discussions with your doctor, we advise you to see a naturopath or another health practitioner who will support you to get well. Even better if you can find someone who specialises in vulvovaginal disease or has experience treating LS.

You may need to get an allergy test, address any deficiencies or other contributing conditions, remove suspect foods (often wheat and diary as standard procedure), eliminating anything with fake ingredients (colours, preservatives, additives) and staying well hydrated.

You will need a comprehensive plan, so get help – you are going to need it!