Any time your vulva itches or hurts, alarm bells are bound to go off. Is it a yeast infection? A urinary tract infection? A sexually transmitted infection?
But sometimes, intense vulvar itching and pain isn’t caused by an infection at all. Vulvar lichen sclerosus (VLS) is an often-misunderstood condition that causes persistent irritation, burning, and skin changes that don’t improve with typical treatments like antifungals or antibiotics. Some people searching online refer to this condition as “lichen sclerosus vulva.”
If VLS isn’t diagnosed and treated early, it can lead to scarring, changes in the shape and structure of your vulva, and an increased risk of vulvar cancer. But with proper diagnosis and treatment, symptoms can be well controlled.
What is lichen sclerosus?
Lichen sclerosus is a chronic inflammatory skin condition that causes intense itching and soreness on the skin in the genital area and anus – genital lichen sclerosus.1 When it affects your vulva, it’s known as vulvar lichen sclerosus (VLS).
Although LS can also appear on other parts of your body, like your neck, upper torso, inner thighs, or mouth, it most often involves your:
- Clitoral hood (the skin that covers your clitoris)
- Labia minora and majora (the inner and outer folds of your vulva)
- Perineum (the space between your vaginal and anal openings)
- The skin around your anus
Over time, LS can cause your skin to become fragile, and if left untreated,2 it can lead to:
- Painful bruising, bleeding, and scarring
- Skin tightening around your vulva and anus
- A slightly increased risk for vulvar cancer (squamous cell carcinoma of the vulva)3
LS affects people of any age and sex, but it’s most common in women before puberty or after menopause.4 Some research suggests that LS affects between 1 in 1,000 and 1 in 300 people.1 But the true number is likely higher since some people have few or no symptoms, and others are misdiagnosed.
Experts say that it’s also important to know that LS isn’t an infection and it’s not contagious.5
What are the symptoms of lichens sclerosus?
The symptoms of vulvar lichen sclerosus (VLS) can be different from person to person. Some people have no symptoms. Others have severe discomfort that impacts them on a daily basis.
Common symptoms include:
- Intense vulvar itching
- Burning or pain
- White, pale, or shiny patches of skin
- Small cracks or splits in the affected areas (fissures)
- Pain with urination or during bowel movements
- Constipation
- Pain during sexual intercourse
As VLS progresses, your skin can become fragile and bruise easily. And fissures between your clitoris and urethra or between the labia can make everyday activities like sitting or peeing feel very painful.
Without treatment, vulvar scarring can develop, your labia may shrink or fuse, your clitoral hood may retract, and your vaginal opening can narrow.2
What does vulvar lichen sclerosus look like?
Vulvar lichen sclerosus often looks like patches of very light or white skin that may appear thin, shiny, or slightly wrinkled.6 These areas can sometimes have red or pink changes, and there may be small areas that look bruised.
In people with darker skin tones, lichen sclerosus can sometimes look like vitiligo at first, with patches of white skin that appear to have lost their usual pigmentation.2
Often, VLS affects the skin around your vulva and anus, forming a figure-8 pattern.7
Causes and risk factors
The exact cause of lichen sclerosus isn’t fully understood.5 Most research suggests it’s an autoimmune disease.8
Genetics may also play a role. So, you may have a genetic predisposition for LS, but it may only appear after something triggers it.
Possible triggers or risk factors include:4
- Skin irritation or injury
- Hormonal changes
- Infections
- Certain medications
While research is ongoing, most experts believe that LS develops if you have both a genetic predisposition and an immune system reaction.8
How is lichen sclerosus diagnosed?
A healthcare professional can usually diagnose lichen sclerosus by looking at your skin and taking a full history of your symptoms.8
In some cases, a skin biopsy is done to help confirm your diagnosis or to help rule out squamous cell carcinoma, especially if there are areas that don’t heal or look suspicious.
While the diagnosis may sound simple, it’s important to understand that LS is frequently overlooked or mistaken for other conditions. If your symptoms don’t get better with typical treatments, it’s important to get a second opinion for what’s causing your symptoms.
When should you see a healthcare provider?
Anytime you have new or worsening vulvar symptoms, like itching, burning, or pain, it’s important to see your primary care provider or gynecologist. They can help you determine whether LS is causing your symptoms or something else.
If you already have an LS diagnosis, you should also see your healthcare provider if:
- Your current treatment isn’t controlling symptoms or inflammation,
- You notice new lesions or bleeding that doesn’t heal 5
Because LS can slightly increase your risk for vulvar cancer, it’s important to continue to have annual check-ins with your healthcare provider, even when your symptoms feel stable.2
What is the treatment for lichen sclerosus?
There isn’t a cure for lichen sclerosus, but it is highly manageable with the right treatment.
Most people are able to calm and control their symptoms with regular and long-term use of strong topical corticosteroid ointments, like clobetasol propionate or halobetasol.5 These ointments can treat symptoms and be used long term as maintenance therapy to keep symptoms and inflammation under control.2 But a steroid cream can’t treat your scarring or skin color changes that already exist.
If topical steroids for lichen sclerosus don’t improve your symptoms, there are other options. But these treatments carry their own risks and side effects, so it’s important to discuss them with your healthcare provider.
Other treatment options may include:8
- Steroid injections
- Nonsteroid topical medications, like tacrolimus or pimecrolimus
- Systemic therapies like methotrexate or retinoids
- Surgery to remove restrictive, scarred tissues
Home remedies for lichen sclerosus
Getting the right medication to manage your symptoms is the most important part of your care plan. But there are many things that you can do at home to help take care of your skin and feel more in control of your symptoms:
- Learn how to care for your vulva: This includes avoiding tight clothing or soaps and scents that irritate your skin, using gentle emollients like vaseline to keep your skin moisturized, and following proper vulvar hygiene practices to support your skin barrier.
- Get familiar with your own anatomy: Regular self vulvar checks like this one can help you notice changes early, so you can report them to your healthcare provider right away.
- Take care of your pelvic floor health: Because LS can lead to symptoms like vulvar pain, pain with urination, constipation, and pain with sex, it’s important not to forget about your pelvic health. A pelvic health physical therapist can be a really helpful addition to your lichen sclerosus care team.
- Vaginal dilator therapy: If scarring or tightening around the vaginal opening is affecting sex, pain, or your pelvic floor function, vaginal dilator therapy can be a helpful tool. When used properly, dilators can improve your tissue mobility and reduce the risk of pain.
Inside the V-Hive Membership, you’ll find pelvic health education and personalized exercises to help you reach your pelvic health goals.
Education and personalized exercises can make a big difference.
Ease your vulvar pain with the V-Hive
Living with lichen sclerosus (LS) can feel overwhelming. But effective treatment and support is available. With the right medical care, skin protection, and pelvic health support, you can find a lot of relief.
For even more education, community, and personalized pelvic health exercises, the V-Hive is here to support you.
You deserve support for your VLS.
References:
- Chamli A., et al. (2023). Lichen sclerosus. StatPearls.
- Kraus, C. N. (2022). Vulva lichen sclerosus. JAMA Dermatology.
- Marfatia, Y., et al. (2019). Genital lichen sclerosus et atrophicus in females: An update. Indian Journal of Sexually Transmitted Diseases and AIDS.
- De Luca, D. A., et al. (2023). Lichen sclerosus: The 2023 update. Frontiers in Medicine.
- The International Society for the Study of Vulvovaginal Disease. (2020). Vulvar lichen sclerosus.
- Krapf, J. M., et al. (2020). Vulvar lichen sclerosus: Current perspectives. International Journal of Women’s Health.
- Cleminson, K., et al. (2021). Vulvar lichen sclerosus. CMAJ : Canadian Medical Association Journal.
- National Organization for Rare Diseases. (2024). Lichen sclerosus.
