Lichen Sclerosus Overview

Lichen Sclerosus can be scary, but the more information and education people have, the better they can manage this condition.

What is Lichen Sclerosus (LS)?

Lichen sclerosus (LS) is a chronic, inflammatory skin condition. It can lead to skin changes, painful sex, and in rare cases, vulvar cancer.

According to research, “one in 70 women presenting to a general gynecology practice with practitioners experienced in diagnosing this condition”1 have Lichen Sclerosus. Around one-third of these people will not feel any symptoms but may have structural skin changes.

Biopsy proven diagnoses of Lichen Sclerosus almost doubled between 1991 and 2011.2 Researchers believe this is due to increased awareness and not increased disease.1

This is great news and gives us hope for the future. Awareness and education of patients and practitioners are important to prevent the unknown progression of this disease.

Who can get Lichen Sclerosus (LS)?

While anyone can have LS, current research shows that prepubescent and post-menopausal vulva owners are the most affected. This research is misleading as “up to 40% of women with LS will display onset of symptoms and cutaneous (skin) changes of vulvar LS during their reproductive years”.3 We believe this often leads to reproductive-aged vulva owners being mis- and undiagnosed.

Some researchers believe symptoms present differently depending on age group. 1 This difference could be another factor in vulva owners waiting an average of 5-15 years from the onset of symptoms to be properly diagnosed.3,4

Prepubescent and post-menopausal vulva owners' main symptoms tend to be vulvar itching. In contrast, people of reproductive-aged years mostly complain of painful sex. We need more studies to determine the cause of this anomaly. Although some researchers theorize it is hormonal and has to do with estrogen levels.

What causes Lichen Sclerosus (LS)?

Although there is currently no cure for LS, we are closer to finding the cause. We know there is a protein that lives on the basement layer of the skin.

For an unknown reason, the body does not recognize this protein as itself, therefore causing the immune system to attack and create large amounts of localized inflammation. The buildup of this inflammation thickens and hardens the skin, causing Lichen Sclerosus's progressive symptoms.

Autoimmune

This process leads some researchers to believe Lichen Sclerosus is an autoimmune condition. In addition, it mostly affects vulva owners and is often accompanied by other autoimmune disorders, which follow the pattern of other autoimmune diseases.

A retrospective study published in 2013 showed that 20-35% of the vulva owners surveyed had a second autoimmune disease. It showed the chances of thyroid diseases, such as Hashimoto thyroiditis or Graves' disease, were at least 4 times greater than any other additional condition.

Other autoimmune conditions were 

  • Vitiligo (loss of skin color in patches)
  • Alopecia areata (patchy hair loss, often in clumps the size and shape of a quarter)
  • Psoriasis (red, itchy scaly patches, most commonly on the knees, elbows, trunk, and scalp)
  • Inflammatory bowel disease (e.g., Crohn's disease, ulcerative colitis)
  • Rheumatoid arthritis (inflammation and pain in the joints)
  • Pernicious anemia (decrease in red blood cells that occurs when the intestines cannot properly absorb vitamin B12)

This study found that “females diagnosed with LS should be screened for other autoimmune diseases, particularly for thyroid disease.”5

Genetic

Some researchers also believe there is a genetic component to Lichen Sclerosus. Researchers questioned one thousand fifty-two females with vulvar Lichen Sclerosus on their family health history. It showed 12% of the participants had a first-generation relation with LS. Leading the researchers to conclude there is a genetic component to Lichen Sclerosus.6

Hormonal

Because of the prevalence of diagnosis in prepubescent and post-menopausal vulva owners, low estrogen levels could be a factor in causing/triggering Lichen Slcerosus.7

Atrophy caused by low estrogen often accompanies an LS diagnosis. Thus, medical providers often prescribe topical estrogen to regain elasticity in the skin.

We need more research into hormones and Lichen Sclerosus to better understand their true effect.

Trauma

Many vulva owners report symptoms after suffering trauma to the vulva skin. Traumas such as childbirth, pelvic surgery involving the vulva, bike accidents, and horseback riding.7

It's unknown if the condition precedes the trauma or if the trauma triggers something in the protein, which then makes the immune system not recognize it. Again, we need more research.

Multiple Factors

Many patients believe multiple of these factors triggered their LS. Although currently, there is no way to know for sure.

The most important thing is to get a diagnosis and begin proper treatment.

Lichen Sclerosus Symptoms

Common Symptoms

Severe Symptoms:

Secondary 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
  • Labial resorption
  • Clitoral phimosis (fusing of the clitorial hood)
  • Labial scarring/fusing
  • 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

Lichen Sclerosus presents differently for everyone. Consequently, these symptoms are what doctors look for when diagnosing, thus making it difficult for the untrained eye.

Patients can have 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.1

Lichen Sclerosus affects mental health.

Unfortunately, most will suffer from secondary symptoms the hardest. The mental health issues that develop because of a Lichen Sclerosus diagnosis can be many and run deep. That's why referral for counseling should accompany every diagnosis.8

The scariest part is patients may not realize they are suffering or need help, which affects their relationships, work, and general quality of life.

While all Lichen Sclerosus symptoms are bad, mental health issues can cause the most harm. Most patients suffer alone. So they cycle in and out of loneliness, anxiety, and depression, not realizing they need help.

This vicious cycle is why it is important to have a support system, whether a counselor, therapist, or support group. Its important patients have a place to connect. Check out our resources page for virtual support groups.

How is Lichen Sclerosus (LS) Diagnosed?

Doctors can diagnose patients with classic Lichen Sclerosus physical symptoms by sight. These include but are not limited to waxy paper skin texture (typically in a figure-eight pattern around the labia minora and anus), scarring/fusing of the clitoral hood, vaginal opening or labia, or resorption of the labia minora.

However, doctors should use a biopsy to diagnose Lichen Sclerosus if

  • the physician is unsure of the diagnosis.
  • the patient does not have typical symptoms.
  • treatment is not working.
  • there is a concern about cancer.

A biopsy should be done before steroid treatment begins because steroids change the skin's texture, possibly causing false-negative results.9 Biopsies should be taken where there is active LS and sent to a pathologist knowledgeable about vulvar inflammatory skin conditions. It is also helpful for the physician to indicate what conditions they are trying to rule in or out.

It is not uncommon for biopsies to come back as a false negative. Whether due to the sample being of healthy skin or the pathologist not being familiar with Lichen Sclerosus. Early LS biopsies have come back as eczema or “nonspecific vulvitis” because they do not show the large levels of inflammation as advanced LS.10

While a good biopsy can diagnose LS, biopsy should not use an inconclusive one to rule it out completely. An expert will use their physical exam along with a biopsy to diagnose LS and develop a treatment plan.

Treatment

Scientists have studied treatments for Lichen Sclerosus for decades. New ones pop up every so often. Unfortunately, physicians adopt them before they are proven effective due to the lack of solid research and patients' demand for more options.

Ultra-potent steroids are the one treatment that has consistently come out on top. Consequently, they are considered the gold-standard treatment for LS.

Steroids as a Treatment for Lichen Sclerosus (LS)?

Researchers have studied steroids as a treatment for Lichen Sclerosus for over 50 years. They continuously come out on top as the most effective treatment for most people.

This is because of what steroids do; they reduce inflammation. The inflammation causes Lichen Sclerosus symptoms. Treatments must reduce inflammation until the skin regains its normal texture to reach remission.

Unfortunately, there is a lot of misinformation around topical steroid treatment for LS. Myths such as topical steroids:

  • thin the skin.
  • get into the bloodstream and cause glaucoma, migraines, other side effects.
  • suppress the immune system.
  • affect your adrenal system.
  • cause scarring/fusing.

These myths have been busted.11 They are not true. On the contrary, steroids have been proven safe and effective over long-term use.12

How to apply steroids for optimal treatment of Lichen Sclerosus (LS).

The critical part of topical steroid use in treating Lichen Sclerosus is ensuring the patient is applying their steroids optimally. Both the schedule of steroid application and how it is applied to the genitals are crucial for success.

For optimal delivery of the topical steroid, it is important to: 1

  • Soak for 15-20 minutes in warm water before applying the steroid. Patients can use a tub, sitz bath, litter box, kiddie pool, shower for soaking. Soaking softens the skin and opens the pores, enabling the steroid to penetrate deeper, closer to the bottom layer of the skin, targeting the deepest inflammation. It's important to pat dry after soaking, before applying the steroid, to remove any water which could prohibit the steroid from being absorbed.
  • Use an ointment versus a cream. Ointments are more potent and last longer. Furthermore, many creams contain alcohol. For those with tears or fissures, this can cause additional burning, deterring many from continual steroid use.
  • Rub the ointment in for 90-120 seconds. Due to the high levels of inflammation LS causes, soaking alone is often insufficient in allowing the steroid to penetrate deep enough. Extensive rubbing pushes the medication deeper into the skin, making it more likely to reach its target.
  • Use between a fingertip and a half a pea-sized amount. Work your way down to the minimum you need without symptoms returning. Using the minimal amount will ensure overuse of the product does not occur.

How often to apply ultra-potent topical steroids to treat Lichen Sclerosus (LS).

Steroid schedule guidelines vary from country to country, as well as by steroid potency. Unfortunately, these inconstancies confuse patients and practitioners, making it hard to know which treatment plan is accurate.

It's important physicians learn the guidelines and then develop treatment plans tailored to each patient's unique case. Not only should they create individualized treatment plans, but they also need to explain them to the patients, so they become partners in their care.

The following are general application guidelines in the United States for ultra-potent topical steroids, but again they vary even among individual doctors.

  • 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.

Second-line Lichen Sclerosus (LS) treatment.

Topical calcineurin inhibitors are second-line treatments for Lichen Sclerosus. They also reduce inflammation but work in a different way than steroids.

When studied against steroids, TCIs took longer to have the same effect as steroids and had a higher occurrence of vulvar cancer. Thus making them second to steroids but a good option for people who do not want or can not tolerate steroids.13

Platelet-Rich Plasma and Co2 Fractional Laser

Recently, a couple of new treatment options have been growing in popularity. These treatments include platelet-rich plasma injections and Co2 fractional laser. However, current research lacks enough evidence showing these treatments reduce the inflammation caused by Lichen Sclerosus, therefore controlling the condition.

Double-blind placebo trials have proven platelet-rich plasma (PRP) and Co2 Fractional Laser ineffective. Although we need more research and larger clinical trials to truly rule them or possible effective combinations out.14,15,7

Day-to-day Care

The following is a list of complementary treatments and care options patients may consider adding to their routine to manage their Lichen Sclerosus and related symptoms found in the eBook, “Three Key Things To Have In Place When You Have Vulvar Lichen Sclerosus” by Jaclyn Lanthier.

Pelvic Floor Physical Therapy:

Although pelvic floor physical therapy doesn't treat Lichen Sclerosus, it does treat possible secondary symptoms such as

  • chronically tight pelvic floor muscles
  • painful sex
  • urinary issues such as urgency, burning, and discomfort
  • bowel issues such as constipation

A pelvic floor physical therapist (also known as a pelvic floor physiotherapist/PFPT) can also work on loosening the scar and fibrotic tissue caused by LS. PFPTs use gentle stretching and bring more blood flow to the area, causing the skin to be more elastic. Learn more at lssupport.net/pfpt.

Emollients/moisturizers

Emollients/moisturizers are recommended by specialists, as topical steroid treatments can reduce moisture in the skin. They help protect, moisturize, soften, and relubricate the skin.

Furthermore, they help reduce friction, which can cause irritation and result in a flare. When used with a treatment plan that addresses the inflammation caused by Lichen Sclerosus, emollients/moisturizers can help prevent the skin from sticking together and fusing. 

Barrier creams

Barrier creams are thicker than emollients and moisturizers. Some examples are Vaseline or Aquaphor. They create a barrier between the vulvar skin and things it comes in contact with, such as urine, water, underwear, clothing, etc.

This barrier can be especially helpful if patients have fissures or tears. For example, urine can burn and sting breaks in the skin, but using a barrier cream over open wounds can reduce pain, protect the skin, and promote healing. 

Therapy and counseling

As mentioned above, Lichen Sclerosus is just as hard, if not harder, on patients' mental health than their physical health. Most doctors do not refer patients for counseling. Still, it can be extremely beneficial to work through depression, fear, health anxiety, sexual health, loss of sexual identity, and anything else that may come up about from Lichen Sclerosus. 

Topical estrogen and testosterone creams

Although they do not impact inflammation, topical estrogen and testosterone creams can improve skin health. They are to complement a Lichen Sclerosus treatment plan.

Hormone creams help reverse dryness and atrophy. They also help plump the skin back up. There are many different types of application options that can be used internally in the vagina and externally on the vulva.

Stress management

Stress can be a huge trigger for many with Lichen Sclerosus. Exploring different de-stressing techniques can help patients achieve remission faster and remain in remission longer.

Practicing mindfulness and meditation practices, shaking and dancing, exercise, yoga, baking, essential oils, listening to music, painting/drawing are all ways to manage stress. 

Diet & Nutrition

Some people with Lichen Sclerosus feel diet/food is their biggest LS trigger. It may be beneficial to talk to a registered dietician or nutrition therapist to test for food sensitivities, allergies, etc. Some have found benefits following a low oxalate diet; others have found benefits following the autoimmune protocol.

There are currently only two studies explicitly focused on diet and Lichen Sclerosus. Both have issues, and their results are inconclusive. Thus, it can be helpful to have a nutrition therapist or dietician help patients navigate different diet options. 

Naturopath or functional medicine doctor

Naturopath or functional medicine doctors work with patients to figure out their symptoms' root cause(s). They may suggest food sensitivity testing, GI MAP testing, etc. Once they establish root causes, they work with patients on diet, lifestyle, supplements, etc., to address their Lichen Sclerosus condition.

Conclusion

Lichen Sclerosus is a complex and aggressive condition. Its effects are mental and physical. Due to the lack of awareness by both patients and practitioners many people suffer in isolation, depression, anxiety, and more unknowingly.

Spreading accurate and complete evidence-based information is our way of combating this invisible beast.

Please bookmark this page, as we will be adding more in-depth information. Also share with a friend, family member, and a medical practitioner. The more we spread the word, the more eyes we have looking for possible cases.

Lastly, we ask that you donate your time, money, products, or services to help us advance our mission. Everyone should know about Lichen Sclerosus because it can affect anyone of us or someone we love.

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