Frequently Asked Lichen Sclerosus Questions

Quick answers to the most pressing Lichen Sclerosus questions.

Get in-depth LS information Here

What is Lichen Sclerosus?

Lichen Sclerosus is a rare incurable progressive inflammatory skin condition. Researchers believe it is an autoimmune disease or hormonal with a genetic component.

Anyone from toddlers to the elderly can get it. Although most research says, it affects prepubescent and postmenopausal vulva owners the most.

Penis owners are at a lower risk of developing Lichen Sclerosus. One PO for every ten VO is affected. Most POs who are afflicted are uncircumcised.

Often misdiagnosed for conditions such as yeast/thrush, urinary tract infection, or herpes, many go untreated and develop worsening symptoms.

When we are finally properly diagnosed, we are often not given proper information, causing us to treat improperly, allowing the disease to progress.

Read our Lichen Sclerosus Overview page to get in-depth treatment and care information.

What are the symptoms of Lichen Sclerosus?

Common Symptoms:
  • Itching (mostly at night)
  • Burning
  • Pain/soreness
  • White waxy skin or patches
  • Fissures, ulcers, nonhealing legions, or blood blisters
  • Tearing
  • Excessive sweating between your legs
  • Chronic urinary tract or yeast infections
Severe Symptoms:
  • Labial resorption
  • Clitoral phimosis (fusing of the clitorial hood)
  • Labial scarring/fusing
Secondary Symptoms:
  • Depression
  • Isolation
  • Fatigue
  • Anxiety
  • Low self-esteem
  • Loss of sleep
  • Low libido
  • Loss of relationships
  • Pain during sex, urinating, or having a bowel movement
  • Vulvar cancer

Patients can be affected by one or a variety of common symptoms, for example, itching, white skin patches, or burning. Some patients are asymptomatic and don’t realize they have LS until they start experiencing painful sex or problems urinating. Others, who have often gone untreated, develop severe symptoms such as fusing/scarring or vulvar cancer.

Is Lichen Sclerosus rare?

Although listed as a “rare” disease, patients and doctors who treat it believe it is more common. According to research, “one in 70 women presenting to a general gynecology practice with practitioners experienced in diagnosing this condition” have Lichen Sclerosus. On average, it takes a vulva owner 5-15 years to get diagnosed after symptoms start.

Lack of a proper diagnosis the first time means there is a large patient population walking around unknowingly.

Organizations such as Lichen Sclerosus Support Network and other LS advocacy groups are spreading the word to minimize these numbers.

What causes Lichen Sclerosus?

Researchers do not know what causes LS. The current leading thought is that LS is an autoimmune disease with a genetic or trauma-induced component.

It is not a sexually transmitted infection or contagious.

Is Lichen Sclerosus curable?

As of now, there is no cure for Lichen Sclerosus, but LS can manage it with proper treatment and stress management.

Can I die from Lichen Sclerosus?

You cannot die of Lichen Sclerosus. Unfortunately, in rare cases (1-5%), LS can turn into vulvar cancer. Most of those cases are patients who have gone untreated for decades. If caught early, before it spreads, vulvar cancer is not fatal.

can my life ever be normal again?

The short answer is yes. The long answer is you will need to manage your condition, mental health, have a qualified medical team, and a strong circle of support.

The hardest part of being newly diagnosed is the lack of information, not knowing what questions to ask, or having someone to talk to.

If you need a knowledgeable medical provider check out our searchable provider directory. Also, find support groups on our resources page.

If you need help and can’t find what you need, please email us at support@lssupportnetwork.org.

What makes Lichen Sclerosus flare?

This disease affects everyone differently. What might cause flareups for one may not cause them for others. It’s important to pay attention to your body. Tracking your symptoms will help you start to learn your triggers.

That being said, the most common triggers are:

  • Stress
  • Diet
  • Irritants like soap, detergent, bubble bath, shower gel
  • The fabric or tightness of underwear
  • Urine left on underwear
  • Sex

what if the steroids don't work?

If your topical treatment stops working, notify your doctor ASAP. Do not leave your Lichen Sclerosus untreated.

Your doctor should figure out what is happening and discuss your options.

There are multiple choices and potencies of steroids. Sometimes it’s not the steroid, but the base it’s mixed in, which people are allergic to. Getting the steroid compounded often alleviates this issue.

If steroids are unusable or ineffective, topical calcineurin inhibitors are a second-line treatment. They work on reducing skin inflammation differently than steroids.

Alternative medical treatments such as Co2 fractional lasers, platelet-rich plasma, and stem cells have been scientifically proven ineffective at managing Lichen Sclerosus.

What is the correct way to apply ultra-potent topical steroids for vulvar Lichen Sclerosus?

General application guidelines are

  • Once a day, every day for one month.
  • Then once every other day for one month.
  • Then twice a week for life, to stop your symptoms from returning. Twice a week is considered maintenance.
  • If symptoms return, begin the schedule over again.

The following are critical steps to use your steroid and attain remission optimally.

  1. Soak for 15-20 minutes in warm water before applying the steroid. Soaking can be done in a tub, sitz bath, shower, etc. This softens the skin and opens the pores, enabling the steroid to penetrate to the bottom layer of the skin, targeting the deepest inflammation. After your soak, pat dry and apply your steroid.
  2. Use a steroid ointment. Ointments are superior to creams in that they penetrate deeper into the inflamed tissue. Furthermore, many creams contain alcohol. For those with tears or fissures, this can cause additional burning, deterring many from continual steroid use. (If this sounds familiar, speak to a medical provider and request an ointment steroid).
  3. Rub the ointment in for 60-90 seconds. Due to the high levels of inflammation LS causes, soaking alone is often insufficient to allow the steroid to penetrate deep enough. Extensive rubbing pushes the medication deeper into the skin.
  4. Use between a fingertip and a half a pea-sized amount. Work your way down to the minimum you need without symptoms returning. This will ensure overuse of the product does not occur.

Will Lichen Sclerosus Affect my sex life?

LS changes the texture of the skin. These texture changes can cause scarring/fusing at the vaginal opening. It can also make the skin of the perineum so thick that it loses elasticity and is prone to tears.

Penetration and friction from sex can damage the skin and cause pain during and after sexual activity. As the damage heals, it causes more scarring, and the cycle continues until the skin is too damaged to allow penetration or vaginismus can develop. Vaginismus is the body’s way of closing off the vaginal cavity to prevent penetration.

Avoiding penetrative sexual activity is important until your body has healed to prevent further damage. Working with a sex therapist helps deal with issues that can arise.