Lichen sclerosus (LS) is an itchy, dry skin condition that eventually can seal vaginas over with fusing, leaving the vulva whitened and scarred.1
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.
Estimates of how common LS is vary widely — from around 1 in 300 to 1 in 1,000 in the general population, up to roughly 1 in 70 in gynaecology clinics and higher after menopause. It most often appears before puberty or after menopause, when oestrogen is low, but it can happen at any age.2
LS is believed to be an autoimmune disorder and is related to autoimmune thyroid disease, alopecia areata, vitiligo, pernicious anaemia, and lichen planus (LP).3
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).4
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 characteristically spares the inside of the vagina itself, which helps tell it apart from lichen planus (which can affect the vaginal lining).
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.5
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.6
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.7
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.8
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.9 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 important, 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.
LS is not something you are born with — it is an autoimmune, multifactorial condition that typically starts either before puberty or around and after menopause.10
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
- Ultrapotent topical steroids (clobetasol) — the essential, first-line treatment
- Plain emollients (emu oil, coconut oil) for comfort and skin protection
- Vaginal dilators and pelvic physiotherapy if the opening has narrowed
- Lasers, light and energy-based devices — experimental, not a replacement for steroids
- Borax solution for labial fusing — a home comfort measure, to use with caution and never in place of medical treatment
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
The mainstay is your prescribed ultrapotent steroid ointment (clobetasol). Alongside it, many people find plain emollients — emu oil, coconut oil and the like — soothing and protective. These comfort measures calm the skin but do not treat the disease; the steroid does that.
Everyone reacts differently, so try everything and speak to your vulvar dermatologist for advice.11
Steroids
Ultrapotent topical corticosteroids — usually clobetasol propionate — are the first-line, gold-standard treatment for lichen sclerosus, and this matters: used properly they do far more than ease the itch. They slow the disease, help prevent the scarring and fusing, and lower the risk of vulvar cancer.7
LS is lifelong, so treatment is usually ongoing — an initial daily course to get control, then a lower-frequency maintenance routine. The old fear that steroids will ‘thin’ vulval skin is largely overstated for this use: applied correctly to vulval skin, significant thinning is uncommon, and it is undertreated LS — not the steroid — that causes the tissue loss, fusing and buried clitoris. The women who do best are the ones who keep up their maintenance steroid.7
Use your steroid exactly as your vulval dermatologist or specialist directs, and don’t stop just because things have settled — that is when maintenance keeps both the disease and the cancer risk at bay.
Lichen sclerosus and vulvar cancer
This is why treatment matters so much. Untreated or poorly-controlled LS carries a raised risk of vulvar squamous cell cancer — very roughly a 2 to 5 per cent lifetime risk, climbing the longer it goes unchecked.14 The reassuring flip side is that women who keep up proper steroid treatment have a much lower risk — in one large study, those who stuck to maintenance treatment had no cancers at all.7
Because of this, LS needs lifelong monitoring. Any area that does not settle with treatment, or that becomes thickened, raised, ulcerated, cracked or a different colour, should be checked and usually biopsied to rule out pre-cancer or cancer. Do not sit on a stubborn patch — get it looked at.
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.12
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.
Read more about vaginal dilators here.
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.13 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.
Some people use a borax solution as a home comfort measure for fusing, but be cautious — it can irritate broken or eroded skin, and it does not replace your steroid, which remains the mainstay. Talk to your practitioner before trying any home approach.
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!
Frequently asked questions
Is lichen sclerosus curable?
There is no cure, but it is very manageable. With proper ongoing topical steroid treatment most women control symptoms, prevent scarring, and lower their cancer risk. It is a lifelong condition that needs monitoring, not a life sentence.7
Are steroid creams safe to use long-term on the vulva?
Yes, when used as directed. Ultrapotent steroids like clobetasol are the gold-standard treatment, and the feared ‘skin thinning’ is uncommon on vulval skin when used properly. It is undertreated LS — not the steroid — that damages the tissue.7
Does lichen sclerosus cause cancer?
It carries a roughly 2 to 5 per cent lifetime risk of vulvar cancer, higher the longer it is poorly controlled — but proper steroid treatment substantially lowers that risk. Get any non-healing, thickened or changing patch checked and biopsied.14
This article is general information and not a substitute for personalised medical advice. Lichen sclerosus needs proper diagnosis, first-line steroid treatment and lifelong monitoring; please work with a doctor or vulval dermatologist, and get any non-healing or changing area checked.
- De Luca DA, Papara C, Vorobyev A, et al. Lichen sclerosus: The 2023 update. Frontiers in Medicine. 2023;10.
- Orszulak D, Dulska A, Niziński K, et al. Pediatric Vulvar Lichen Sclerosus—A Review of the Literature. International Journal of Environmental Research and Public Health. 2021;18(13):7153.
- Tran DA, Tan X, Macri CJ, Goldstein AT, Fu SW. Lichen Sclerosus: An autoimmunopathogenic and genomic enigma with emerging genetic and immune targets. International Journal of Biological Sciences. 2019;15(7):1429–1439.
- Kirtschig G. Lichen Sclerosus—Presentation, Diagnosis and Management. Deutsches Ärzteblatt international. 2016.
- Pope R, Lee MH, Myers A, et al. Lichen Sclerosus and Sexual Dysfunction: A Systematic Review and Meta-Analysis. The Journal of Sexual Medicine. 2022;19(11):1616–1624.
- Fergus KB, Lee AW, Baradaran N, et al. Pathophysiology, Clinical Manifestations, and Treatment of Lichen Sclerosus: A Systematic Review. Urology. 2020;135:11–19.
- Lee A, Bradford J, Fischer G. Long-term Management of Adult Vulvar Lichen Sclerosus. JAMA Dermatology. 2015;151(10):1061.
- Burger MPM, Obdeijn MC. Complications after surgery for the relief of dyspareunia in women with lichen sclerosus: a case series. Acta Obstetricia et Gynecologica Scandinavica. 2016;95(4):467–472.
- Ranum A, Pearson DR. The impact of genital lichen sclerosus and lichen planus on quality of life: A review. International Journal of Women’s Dermatology. 2022;8(3):e042.
- Winfrey OK, Fei YF, Dendrinos ML, Rosen MW, Smith YR, Quint EH. Lichen Sclerosus throughout Childhood and Adolescence: Not Only a Premenarchal Disease. Journal of Pediatric and Adolescent Gynecology. 2022;35(6):624–628.
- Lee A, Fischer G. Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. American Journal of Clinical Dermatology. 2018;19(5):695–706.
- Surani A, Marfatia Y, Baxi R. Genital lichen sclerosus et atrophicus in females: An update. Indian Journal of Sexually Transmitted Diseases and AIDS. 2019;40(1):6.
- Flynn AN, King M, Rieff M, Krapf J, Goldstein AT. Patient Satisfaction of Surgical Treatment of Clitoral Phimosis and Labial Adhesions Caused by Lichen Sclerosus. Sexual Medicine. 2015;3(4):251–255.
- Bleeker MCG, Visser PJ, Overbeek LIH, van Beurden M, Berkhof J. Lichen sclerosus: incidence and risk of vulvar squamous cell carcinoma. Cancer Epidemiology, Biomarkers & Prevention. 2016;25(8):1224–1230.


