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Lichen Sclerosus Alternative Treatment Guide

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Figuring out what works to improve your Lichen Sclerosus (LS) symptoms, flares, and disease progression can be confusing. Despite most of us knowing that we need an internal and external approach to managing Lichen Sclerosus, throwing all possible remedies at it, on it, and around it is very tempting. Most of us have been through the stage of cramming our toolbox full, hoping to find any relief, and desperately trying to slow or halt disease progression. This Lichen Sclerosus Alternative Treatment Guide comprehensively looks at all the potential tools.

Lichen Sclerosus Alternative Treatment Guide
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The Cancer Risk

As a vulvar cancer survivor myself, this risk is genuine, and I want to highlight it right from the start. (1) Lichen Sclerosus is a chronic inflammatory skin condition linked to an increased risk of disease progression to precancerous Vulvar Intraepithelial Neoplasia, VIN, and vulvar cancer. This summary from the Baylor College of Medicine's Department of Obstetrics and Gynecology demonstrates a clear association between LS and these concerning outcomes. (2)

A recent review of LS treatment options puts the risk of malignant transformation at around 4% of women with an LS diagnosis. (3)

The Current Standard of Care: High-Potency Topical Steroids

If you have been diagnosed with LS, you almost certainly were directed to the first-line treatment and the current standard of care - high-potency topical steroids. (3) These are often prescribed in tandem with topical estrogen to mitigate the risks of developing VIN and vulvar cancer. These treatments are often successful at alleviating LS-related symptoms and are essential for cancer prevention and the management of precancerous lesions.

Steroid options based on disease severity, as suggested by the literature: (3)

  • Very severe disease - clobetasol propionate ointment
  • Moderate to severe disease - betamethasone dipropionate ointment
  • Mild disease - methylprednisolone aceponate ointment
  • Very mild "burnt out" disease - OTC hydrocortisone ointment

It is important to note that the literature acknowledges that there is a subset of women who do not respond well to topical steroids and that many of the scientific studies surrounding LS and alternative LS treatments often lack sufficient sample sizes or study replication. (3) Additionally, long-term use of topical steroids leads to skin thinning, which can create other problematic symptoms.

One recent study put it like this, "First-line topical corticosteroid as monotherapy is frequently not adequate to fully suppress disease activity and control symptoms." (4)

For this reason, many LS patients seek relief or long-term health maintenance through a multimodal approach, including alternative treatments and therapies.

My Treatment Philosophy

My treatment philosophy is that each patient must own their care and should utilize every tool they have access to and feel comfortable with to manage their disease progression to get symptoms under control. It's not about what treatment is best but what tools are best for each individual. However, nutrition, lifestyle, and environment are foundational in my approach to every case. (1)

You are in charge of your health and care and are an integral part of the team. Your doctors and functional practitioners should guide, mentor, and teach you how to care for yourself. So, with that said, let's take a look at some of the most popular alternative treatments for lichen sclerosus.

Functional Medicine

Functional medicine is an approach to healthcare that focuses on identifying and addressing the underlying causes of health issues rather than just treating the symptoms. It emphasizes the interconnection between various bodily systems and considers factors such as genetics, stressors, environment, lifestyle, and diet in assessing and promoting overall well-being.

While you can self-direct your healing journey from start to finish: identifying food triggers, tracking symptoms, addressing nutritional deficiencies, and seeking knowledge and support, Functional Medicine practitioners and Functional Nutritionists can help guide, coach, and support you. (5)

As a Functional Medicine practitioner, I use self-directed lab work to break the trial-and-error cycle. I'm here to do the research, connecting the dots between your personal lab work, symptom history, and overall health timeline.

What am I looking for? I'm looking for every potential source of stress, including mental and emotional stress and hidden stressors like infections, nutritional deficiencies, food sensitivities, genetic mutations, heavy metals, and other environmental toxins. Once I've got a handle on what we're working with, we can identify specific healing opportunities and guide you toward restoring your body to normal function.

Dietary Change

The relationship between what you eat and how it affects your LS can be confusing, but it shouldn't be overlooked or underestimated. It may be one of the most helpful tools in your toolbox for relieving symptoms, calming inflammation, and slowing or stopping disease progression.

Despite an overall lack of quality research investigating the relationship between diet and LS, knowing that LS is a chronic inflammatory dermatosis, we can better understand how diet impacts LS through research that looks at gut health, diet, inflammation, and diet and immunity.

Check out this comprehensive guide on Lichen Sclerosus and Diet available on the Lichen Sclerosus Support Network site, where I discuss the relationship between food and inflammation and explore the scientific literature on popular healing diets, including the Autoimmune Protocol and the Ketogenic Diet, as well as several potential dietary triggers, like oxalates, sugar, gluten, and dairy. (6, 7)

Pelvic Floor Therapy

Working on your pelvic floor muscles' strength and overall health might be integral to treating your LS. Like any other muscle, your pelvic floor can weaken, tense up, and affect your body's functions. Working with a pelvic floor physical therapist skilled in intra-vaginal and intra-rectal treatments may help with various LS symptoms, including painful sex, painful fusing and scarring, urinary and bowel issues, and pregnancy-related problems. (8)

Though there is no specific research on pelvic floor therapy and LS, one study on gynecological cancer survivors experiencing dyspareunia, or pain during sexual intercourse, concluded that a 12-week pelvic floor physical therapy treatment that involved education, manual therapy, and targeted exercises proved very helpful for 86% of the study participants and that improved sexual functioning and reduced urinary symptoms were the most significant effects. (9)

Another study investigating dyspareunia in a broader population of women found that pelvic floor therapy can be an essential part of a multidisciplinary treatment of painful intercourse. (10) However, this study expressly excluded women diagnosed with vulvar dermatological conditions.

Vaginal Dilators

Vaginal dilators are medical devices used to stretch and expand the vaginal tissues gently. They are often recommended as part of the treatment plan for LS if the disease progression has caused vaginal tightness, discomfort, and narrowing or if you are experiencing painful penetrative sex.

Dilators come in various sizes and are intended to be inserted gradually, increasing in size over time. Jaclyn of the Lost Labia Chronicles explains that with regular use, patience, and persistence, vaginal dilators can increase blood flow to the area, improve skin elasticity, help with scarring and fusing, desensitize the brain and body from associating penetration with pain, and improve sexual function. (11)

Various research papers mention vaginal dilators used in conjunction with topical steroids for the treatment of LS or post-operative care. Still, these papers have not explicitly been studying their efficacy. (3, 12)

An industry-supported study promoting a new type of vaginal dilator, the Milli, noted that many patients report the use of dilators as cumbersome and time-consuming and that it may even increase their underlying genito-pelvic anxiety. (13, 14) Due to this, the Milli was designed to require only one insertion during a treatment session and give the patient control over gradual dilation, with a starting diameter of 15mm and the capability of expanding the diameter in 1mm increments.

TULIP® / Fractional Laser

The TULIP® treatment is a high-tech, single-treatment therapy for Lichen Sclerosus developed by and administered by the Coyle Institute in Pensacola, FL. (15) After an initial evaluation and biopsy, if deemed necessary, a ProFractional™ laser is used to facilitate skin resurfacing and rejuvenation.

This laser technology is specifically designed to improve the appearance of the skin by removing damaged or scarred tissue, promoting collagen production, and improving blood flow through revascularization to the affected area.

Whereas traditional ablative lasers target the entire surface of the skin, ProFractional™ laser technology, also referred to as an Er: YAG (Erbium-Doped Yttrium Aluminum Garnet) laser, uses various wavelengths, including erbium or yttrium-based laser mediums rather than CO2. This creates a pattern of tiny columns of treated tissue or closely spaced microthermal treatment zones (MTZs) while leaving surrounding tissue intact. This fractional approach promotes faster healing and reduces downtime and the risk of complications.

During the procedure, the ProFractional™ laser device is passed over the skin, emitting fractional laser beams that create controlled microscopic injuries in the skin's deeper layers. The fractional laser beams stimulate the body's natural healing response and encourage collagen production. The treated skin will initially appear red, but over the next few weeks to months, the skin heals and regenerates, reducing LS's superficial dermal sclerosus characteristic.

Dr. Michael Coyle, a specialist in Urogynecology Female Pelvic Medicine and Reconstructive Surgery and founder of the Coyle Institute, conducted preliminary research on the use of ProFractional™ laser for the treatment of LS, concluding that it is a safe and effective treatment, supplementary to topical steroids. (16) Though more extensive studies are needed, laser treatment reduces symptoms, improves patients' lives, and may pave the way for regenerative treatment of chronic pathologies. His website also includes a series of helpful and realistic before-and-after images. (15)

**Note - I have witnessed at least one client injured by this procedure.

MonaLisa Touch

The MonaLisa Touch laser, developed by DEKA Medical, is a CO2 fractional laser treatment that's primarily used for gynecological applications, explicitly addressing vaginal health. (17) It employs high-energy beams of light at a specific wavelength, which water molecules in the skin absorb, causing controlled microthermal zones of damage within the skin's layers.

Unlike traditional CO2 lasers that target the entire skin surface, fractional CO2 lasers create microscopic columns of treated tissue surrounded by untouched skin. This fractional approach creates microthermal zones that stimulate the body's natural healing processes, including collagen production, skin regeneration, and increased blood flow from neovascularization and hypervascularization.

Recent studies demonstrated that fractional CO2 laser therapy appears to be a promising treatment modality for LS. These studies showed that this treatment may stimulate protein synthesis, accelerate tissue reconstruction, and decrease lichenification. (18)

In another study, women with LS were treated with fractional CO2 laser and then administered questionnaires, including the Dermatology Quality of Life Index (DLQI), the Female Sexual Functional Index (FSFI), and two others created to assess disease severity. The treatment proved effective at reducing symptoms and can be considered a maintenance alternative to corticosteroids, though more extensive studies are needed to support these initial findings. (19)

Stem Cells

Dr. Nathan Newman, MD, a Dermatologist and Cosmetic Surgeon who innovated the Stem Cell Lift® procedure, has treated over 200 LS patients since 2011. (20) His Stem Cell Lift® procedure is a no-cutting, no-scarring, all-natural skin rejuvenation treatment that uses your stem cells. From data he has collected in his practice, improvement after one treatment is seen in 60% of patients.

When steroids are discontinued abruptly, it can lead to a rebound flare from steroid withdrawal, and this withdrawal flare is often challenging to differentiate from LS symptoms. Acknowledging that the use of steroids can lead to a vicious cycle of dependence, he believed that his Stem Cell Lift® procedure could be beneficial as a supplementary treatment that more acutely addresses the underlying disease process.

The Stem Cell Lift® procedure involves using non-embryonic adult or autologous stem cells (obtained from the patient's body). Stem cells are undifferentiated cells that have the potential to develop into various cell types in the body. Through a minimally invasive procedure, adipose stem cells are harvested, separated, concentrated, and prepared for injection into the LS-affected skin.

These adult stem cells, serving as part of the repair and maintenance system of the body, become activated by the surrounding injured and diseased tissue, dividing to repair, heal, and regenerate healthy tissue.

His preliminary research on using the Stem Cell Lift® procedure to treat LS involved 100 treated women who were given questionnaires to statistically analyze and compare the improvement in symptoms before and three months after treatment. Patients reported statistically significant improvement in symptoms, including itching, burning, pain, fusing, tearing, and fissures, and improvement in their ability to carry out daily activities, including exercising and sexual intercourse. (21)

Platelet-Rich Plasma (PRP) Filled O-Shot Therapy

Dr. Joseph Brooks, MD, my doctor (who I highly recommend for any locals!), is a Vulvovaginal Disease Expert and the head provider owner at Arizona Specialized Gynecology, has had success managing the care of Lichen Sclerosus through Platelet-Rich Plasma (PRP) Filled O-Shot Therapy. (22)

The O-Shot™, or Orgasm Shot, is a non-surgical procedure designed to treat urinary incontinence, increase sexual arousal and natural lubrication, and produce more substantial and more frequent orgasms. PRP is a concentrated solution derived from the patient's blood, which is rich in platelets and growth factors. These are crucial in increasing blood flow and stimulating vulvar tissue regeneration. The shot is prepared by drawing blood, processing it to concentrate the platelets, and injecting it into the affected tissue.

Like stem cell therapy, platelet-rich plasma (PRP) acts as a regenerative agent, containing essential factors for cell growth, migration, repair, proliferation, and regeneration. Though still experimental, some studies have reported success in treating LS. (3)

Phototherapy

Phototherapy is a broad term that encompasses various treatments using light, including UVA-1 therapy, UVB therapy, red light therapy, and photodynamic therapy.

UVA-1 Therapy

UVA-1 therapy involves exposing the skin to UVA light in the 340-400 nanometers. The therapy requires specialized equipment to cover the entire body or specific treatment areas. A treatment plan is carefully customized for each patient, considering factors such as the condition being treated, the patient's skin type, and the skin's response to therapy.

This treatment is used to treat skin disorders that involve inflammation, immune system dysfunction, or abnormalities in the collagen and connective tissue of the skin.

Short-term side effects of UVA-1 therapy include redness, photosensitivity, dryness, and mild irritation. Long-term side effects may include changes in skin pigmentation and the potential for skin aging. Before considering it as a treatment option, a careful risk-benefit analysis should be made.

It's important to note that UVA-1 therapy should only be administered by trained healthcare professionals. The treatment plan should be individualized based on the patient's diagnosis and needs. Regular follow-up appointments are typically required to assess the patient's response to treatment and make necessary adjustments to the therapy plan.

One study from 2014 investigated how UVA-1 phototherapy compared to standard treatment with topical high-potency steroid clobetasol propionate in the treatment of vulvar LS and found that even though there was significant clinical improvement, phototherapy was inferior concerning practicability of the treatment, reducing symptoms, like itching, and overall improvement in quality of life. (23)

A small study looked at the effect of UVA1 therapy on seven women with severe LS uncontrolled by ultrapotent topical corticosteroids. They were treated with UVA1 therapy from a high-output source and then graded on clinical disease signs and symptoms. Five patients improved with therapy, though two experienced a relapse within the first year after treatment. The researchers concluded that UVA1 therapy may benefit the management of LS if responding poorly to standard therapies. (24)

UVB Therapy

UVB therapy involves exposing the skin to ultraviolet B light, a specific wavelength typically 290-320 nanometers. Narrowband UVB (NB-UVB) is the most common form of UVB therapy and uses a specific narrow range of UVB wavelengths (around 311 nm). Broadband UVB therapy uses a broader range of UVB wavelengths.

This treatment treats skin disorders involving excessive cell growth, inflammation, or immune system dysfunction, such as psoriasis and eczema. It may effectively manage LS by reducing inflammation, modulating the immune response in the skin, reducing scarring, and possibly enhancing the effectiveness of standard treatments, like topical corticosteroids, as adjuvant therapy.

UVB therapy is generally considered an outpatient procedure, and there is minimal to no recovery time involved. After each session, patients may experience temporary redness or mild sunburn-like symptoms, sometimes including blistering, but these usually subside within a few hours to a day. Patients typically undergo multiple treatment sessions over several weeks. The frequency and duration of sessions depend on the condition being treated and the individual's response.

Though a recent review of vulvar LS treatments outlines that various photo therapies can be effective, naming UVB specifically, I was unable to find any research involving the treatment of vulvar LS with UVB light therapy. (25) However, two published case studies demonstrate that narrowband UVB therapy successfully treated widespread extragenital LS (lichen sclerosus that affects non-genital skin). (26, 27)

Suppose UVB therapy is something you'd like to investigate further for the treatment of vulvar LS. In that case, I suggest you contact your vulvar specialist or dermatologist for an opinion on how it may help your specific case. Though some med spas and derm clinics around the globe offer this type of treatment, primarily for treating vitiligo, psoriasis, and eczema, I could not find any source that treats vulvar LS. (28)

UVB treatments can also be done at home with specialized wands that range from under $100 to $500. Though it may be tempting to try it, I'd caution that you speak with a specialist to discuss whether the treatment is proper for you, what the best course of home treatment would be, and any potential damaging side effects, like mild burns or blistering. Remember, your vulva has delicate skin!

Red Light Therapy

Red light therapy, also known as low-level laser therapy (LLLT) or photobiomodulation therapy, is a non-invasive medical treatment that uses specific wavelengths of red or near-infrared light to stimulate cell biological processes. It's commonly used for various dermatological conditions, including LS, for its potential to promote skin healing, reduce inflammation, and improve overall skin health. (29)

It works by delivering low-level energy in the form of photons to the skin and underlying tissues. Mitochondria, the energy-producing structures within cells, absorb these photons. The absorption of light energy by mitochondria can lead to various cellular responses, including enhanced production of adenosine triphosphate (ATP), the energy currency of cells - which can stimulate tissue repair, reduce inflammation, and promote circulation.

One study that included 100 LS patients investigated whether or not red light therapy could be an effective alternative for women who were not responsive to topical therapy. Participants received 10 LLLT treatments of 808 nanometers over eight weeks. Rather than a histologically significant method to determine success, this study used the HRQoL, a Danish health-related quality of life tool that determines the patient's perspective concerning eight domains, including pain, problems sleeping, and low spirit. The researchers concluded that LLLT could be an efficient supplement to improve the quality of life of LS patients. (30)

Photodynamic Therapy (PDT)

Another form of phototherapy is photodynamic therapy (PDT). PDT uses a photosensitizing agent (a light-sensitive drug) and a specific wavelength of light (often red or near-infrared) to damage or destroy targeted cells or tissues selectively. When light activates, the photosensitizer generates reactive oxygen species (ROS) or singlet oxygen, leading to cell damage.

PDT is primarily used to treat certain types of cancer, including skin cancer, esophageal cancer, lung cancer, precancerous conditions, and some non-cancerous skin conditions. This treatment relies explicitly on the interaction between the photosensitizer and light.

One study that included 102 female patients investigated the effect of photodynamic therapy for LS and concluded that it had an excellent therapeutic effect, with an 87.25% improvement rate. In around half of the cases, there was a partial remission of lichenification with hyperkeratosis, and in just under 40% of cases, there was a reduction in atrophic lesions. (31)

Exosome Therapy

Exosome therapy is an emerging field of regenerative medicine that involves using exosomes, nanosized (typically 30-150 nanometers) vesicles that are naturally produced and secreted by various cell types, including stem cells. Exosomes contain bioactive molecules such as proteins, lipids, and nucleic acids (RNA and DNA) and play a crucial role in cell-to-cell communication. They carry and transfer bioactive molecules to recipient cells, influencing cellular processes, including cell proliferation and differentiation, cell death, angiogenesis, immune regulation, and tissue repair. (32)

Exosomes used for therapy can be isolated from cell culture supernatants, typically derived from stem cells like mesenchymal stem cells (MSCs) or other suitable sources. They can also be produced using engineered cells. Once collected, they are purified to remove cellular debris and other contaminants. This preparation can then be administered to patients through various routes, including intravenous, local, or topical application. (33)

An interesting study looking at autologous lipoaspirate, or fat grafting, as a new treatment for therapy-resistant LS, describes that adipose tissue contains mesenchymal stromal cells, or adipose tissue‐derived stromal cells (ASCs), that function as progenitor cell types capable of differentiating. ASCs can produce and secrete various growth factors, cytokines, proteins, and exosomes that may function either in an immunomodulatory, pro‐angiogenic, or anti‐fibrotic fashion. (34)

Though exosome therapy looks promising for LS because of its ability to aid in tissue repair and regeneration, its anti-inflammatory and anti-fibrotic effects, and an overall lower immunogenicity and toxicity profile, an area of particular importance when treating autoimmune diseases, the process of isolating exosomes is expensive, time-consuming, and has a significant effect on their therapeutic properties. (32)

Borax

I want to start this section by highlighting that the use of Borax in treating LS is very controversial. The approach has no scientific backing, so all information you find online is anecdotal evidence. That said, it's true that thousands of women swear that it has been healing and helpful. The takeaway - please inform yourself thoroughly and conduct your own risk/benefit analysis. Please educate yourself on the specific ways women are incorporating Borax into their treatment plan, and enter with the full knowledge that you use this treatment at your own risk.

As another clarification, I want to highlight the difference between boron, boric acid, and Borax.

Boron (B) is a natural chemical element in soil, water, and plants. In small amounts, it is an essential micronutrient for plants and animals, including humans.
Boric acid is a chemical compound derived from boron. It's commonly used as an antiseptic, insecticide, and flame retardant. It can also be used in some medical and dermatologic applications, although its use in skincare products is controversial due to its potential toxicity.

Borax (Na2B4O7·10H2O), also known as sodium borate, sodium tetraborate, or disodium tetraborate, is a mineral and salt of boric acid. It's used in household cleaning products, as a laundry booster, and in some cosmetic products, like bath bombs and scrubs. It can be combined with glue and water to make slime, the gooey tactile concoction kids like to play with. Its safety is questionable, but it is known to be potentially toxic if ingested in significant quantities and is not intended for internal use.

Borax, though much less toxic than boric acid, ingesting 5-10 grams for children or 10-25 grams for adults may prove harmful and potentially lead to shock and death. (35)
That said, as an LS patient, you may have come across the use of diluted or low-dose borax preparations as an alternative treatment, particularly regarding reversing labial fusing, which is often common in advanced stages of LS.

In a post titled "Lichen sclerosus and Why Borax is My New Best Friend," Ann Foweraker, an LS patient, details her positive experience with a healing regimen that involves using a topical salve containing a diluted borax solution and also drinking a diluted borax solution daily (36). Her post details her desperation with her symptoms, research, and the specific measurements she uses in her homemade preparations.

The most common use of Borax solution appears to be a frequent soak or sitz bath of the affected tissues. Ann Foweraker and her co-author Allicia Mae Cain detail how Borax therapies work in their book - HELP! I Have Lichen Sclerosus: Hope for remission of LS symptoms via natural healing methods, including sodium tetraborate (Borax) therapies.

My Vagina, a website dedicated to being a vulvovaginal health resource, also details how to make and apply a saturated borax solution to fused vulval skin to slowly begin to unfuse labial and clitoral adhesions caused by LS. This page also includes a long list of potential health benefits of boron, including a link to corresponding research. (37)

Why does it seem to work? One possibility is that our diets are deficient in the essential mineral boron. Fruits and vegetables grown in poor or overused soil may reduce our ability to get enough boron through diet. But remember, boron is different from Borax. When ingested or absorbed from topical applications, Borax will break down into its chemical components: sodium, boron, oxygen, and water. And, since boron's toxicity is dose-dependent, women advocating for the use of Borax to treat LS believe that proper dilution of the compound significantly reduces the risk of toxicity.

What are safe levels of boron intake? Different regulatory bodies have offered variable tolerable upper intake levels for adults.

  • 20 mg/day - US Institute of Medicine and Nutrition Board
  • 0.4 mg/kg of body weight, or about 28 mg/day for a person who weighs 70kg(154lbs) - World Health Organization
  • 10 mg/day - European Union (38)

Lastly, I'll reiterate my 'use at your own risk' sentiment again. The British Association of Dermatology released a specific warning about using Borax in the treatment of LS, highlighting that there has not been any scientific research conducted on its efficacy or safety and that long-term use may exacerbate skin irritation. (39)

Low-Dose Naltrexone (LDN)

Low-dose naltrexone (LDN) is a medication that is derived from naltrexone, a drug initially used in higher doses to treat opioid dependence. LDN refers to using much lower doses of naltrexone than approved initially for other purposes. LDN is thought to exert its effects through modulation of the immune system, primarily by temporarily blocking opioid receptors, which can stimulate the release of endorphins and affect immune responses.

LDN has gained attention as an off-label treatment option for various chronic inflammatory conditions and autoimmune disorders. Practitioners believe that LDN modulates immune responses, helping reduce excessive immune activity and contributing to systemic inflammation and autoimmune reactions. Still, researchers caution that insufficient quality evidence exists to make any definitive conclusions on its efficacy. (40)

Though I did not come across any research papers or case studies explicitly dealing with lichen sclerosus, a paper published in 2017 reported on four patients taking LDN for lichen planopilaris (LPP), another inflammatory skin condition believed to have an autoimmune component. Patients with LPP experience itch, pain, burning, and scarring symptoms, but it is of the scalp skin instead of the vulva. LDN at a dose of 3 mg daily reduced itching, inflammation, and disease progression in all patients. It was also well tolerated and caused no adverse effects. (41)

Practitioners, LDN specialists, and pharmacists with the LDN Research Trust, a trust pioneering LDN research by initiating clinical trials for autoimmune diseases and cancers, have witnessed positive case studies in which LS patients have benefitted from LDN use. (42) They do, however, advise that LS is a complex condition to treat and manage and that LS patients require a long course, typically between 6-9 months (or longer) of daily oral and topical LDN treatment before seeing benefits, and that reducing inflammation through diet seems to be a key component of success. (43)

Further, in an interview published on LDNscience, a patient suffering from both fibromyalgia and LS stated, ".. after a few months of LDN, I started to notice an improvement in my Lichen Sclerosus. This was an unexpected and amazing positive side effect. Now, after 11 months of LDN, it has healed 99%. To me, that is nothing short of a miracle!" (44)

The Role of Emollients

An emollient is a substance, often a cream, lotion, or ointment, applied to the skin to soften, moisturize, and soothe dry or irritated skin by forming a protective barrier and preventing moisture loss.

Research suggests that emollients should be an integral part of LS treatment. (3) As most LS patients know, this stubborn condition requires maintenance and management. While emollients may not directly treat the underlying inflammation of LS, many emollient or emollient-containing topicals can provide supportive care to LS patients. Many find them helpful for soothing itch and irritation, moisturizing dry skin, protecting the skin from contact with urine, and reducing pain during sexual intercourse. Here is a run-down of some of the most popular.

EMUAID® and EMUAIDMAX®

Emuaid® and EmuaidMax®, produced by Speer Laboratories, are over-the-counter topical medications formulated to address various skin concerns, including LS. They contain several naturally-derived active ingredients and are promoted as multi-purpose solutions for skin health and recovery. EmuaidMax® is essentially the maximum strength version of Emuaid®, containing a higher concentration of the active ingredients. (45)

The active ingredients and their corresponding skin benefits are:

  • Colloidal Silver - known for having broad-spectrum antimicrobial properties that fight infection (46)
  • Emu Oil - derived from emu bird fat- contains anti-inflammatory and moisturizing fatty acids.
  • Tea Tree Oil has antibacterial and antifungal properties that address skin infections.
  • Bacillus Ferment - a probiotic ingredient that may help promote a balanced skin microbiome (47)
  • L-Lysine HCL - an amino acid believed to promote healing and support skin health
  • Vitamin E - a potent antioxidant that protects against oxidative stress, reduces inflammation, and promotes skin hydration.

With testimonials, it's important to remember that all patients have varied levels of disease progression and that there is likely a selection bias in that those experiencing the most significant improvements are more likely to leave a review. Companies are also more likely to publish the most positive experiences.

That said, testimonials published on the Emuaid® site and Patient.info forums claim that these products provide fast-acting itch relief and soothe burning but advise that they're not a cure. (48) Many also mention that the cream has a high price point but that the relief is worth the cost.

Emu Oil

Emu oil is an emollient derived from the fat of emu birds that is rich in fatty acids, antioxidants, and anti-inflammatory compounds. Because of its moisturizing and anti-inflammatory properties, many LS patients find it soothes itching and irritation.
It is also known for its transdermal properties, which can penetrate deeper skin layers, including the dermis. Its unique molecular structure, including its fatty acid composition, allows emu oil to readily permeate the skin's barrier and deliver its bioactive components to the underlying tissues. Many patients use it on their own, and others use it in conjunction with their prescribed steroid.

A study conducted in 2017 investigated the effect of emu oil on vulvar pain. The researchers concluded that there was a high level of patient satisfaction for a variety of vulvar pain conditions but that patients with atrophic vulvar conditions, including lichen sclerosus, experienced less improvement or that it was soothing but had minimal to no effect on reversing atrophic damage. Most women said they would recommend its use, and only one of 70 found it irritating. (49)

Testimonials from Purple Emu, Ltd. claim great success in treating LS, including everything from soothing the itch and burn to breaking down scar tissue, rejuvenating damaged skin, and even curing the condition. Some acknowledge that soothing is almost immediate, while healing may take a long time of dedicated use. (50)

Emu oil is very accessible, with bottles coming in various sizes and prices. Some reputable suppliers include Emu Joy, Montana Emu Ranch, and NuMu small-batch emu oil. (51, 52, 53)

Aquaphor

Aquaphor is an over-the-counter ointment containing a blend of ingredients designed to act as a protective barrier on the skin's surface, locking in moisture, preventing irritation, and promoting healing. (54)

For LS management, Aquaphor's occlusive properties create a protective barrier that allows for the flow of hydration and oxygen while also locking in moisture and creating an ideal healing environment. This may help to reduce the risk of tearing and any discomfort caused by friction and other irritants.

The active ingredients and their corresponding skin benefits are:

  • Petrolatum - commonly known as petroleum jelly, serves as the primary occlusive agent, forming the protective barrier, locking in moisture, preventing water loss, and protecting from external irritants (55)
  • Mineral Oil - retains moisture and prevents skin dehydration
  • Lanolin Alcohol - helps protect, soften, and soothe the skin
  • Glycerin - a humectant that attracts moisture from the air and helps hydrate the skin (56)
  • Panthenol (Vitamin B5) - moisturizes and soothes the skin
  • Bisabolol - a natural skin-soothing, anti-inflammatory compound found in chamomile (57)
  • Eucalyptus Oil - added for fragrance and potential skin-refreshing effects
  • Menthol was added for fragrance and a potential cooling sensation.

According to testimonials available on forums and the LS subreddit, it seems that with Aquaphor, you either love or hate it. (58) Many women expressed being sensitive to Aquaphor, which may be partly due to lanolin, an ingredient given the distinction of being the 2023 Allergen of the Year by the American Academy of Dermatology Association. (59) Vanicream™ was suggested as a lanolin-free alternative. (60)

Others stated that they use it for specific purposes rather than as a part of their daily LS maintenance routine, with one woman writing, "I cannot stand Aquaphor but will use it when I go swimming."

VMAGIC

VMAGIC is a brand of vulvar balm specifically formulated for the vaginal area. Produced and marketed by Medicine Mama's Apothecary, VMAGIC is an all-natural, organic, and non-hormonal solution containing a blend of plant-based ingredients designed to provide relief and comfort for various vaginal concerns, including dryness, itching, irritation, and discomfort. (61)

Medicine Mama's Apothecary offers a Lichen Sclerosus specific bundle that includes VMAGIC Vulvar Balm, along with an On-The-Go Feminine Skin Balm and a Gentle Feminine Wash. (62)

Active Ingredients are detailed on-site and include:

  • Honey + Propolis - demonstrated to play an integral role in wound healing and is known for having antioxidant, anti-inflammatory, and antimicrobial properties (63)
  • Organic Extra Virgin Olive and Avocado Oil - provides deep hydration and essential fatty acids for skin softness and suppleness.
  • Organic Cera Alba Beeswax - forms a protective barrier, sealing in moisture and guarding against environmental factors.
  • Organic Sea Buckthorn - antioxidant-rich oil that supports skin regeneration and healing due to its well-balanced content of fatty acids, carotenoids, and vitamins (64)
  • Camellia - helps maintain skin's moisture balance.
  • Vitamin E - acts as an antioxidant, protecting skin cells from oxidative stress and promoting skin health.
  • Chamomile (Matricaria) - an anti-inflammatory that calms and soothes the skin
  • Water Soluble Collagen - enhances skin elasticity and hydration and has an overall rejuvenating effect on damaged and aging skin (65)

Though I could not find a published research paper, the site includes a dropdown labeled 'Trial Results' that details a clinical trial that included 13 people experiencing vaginal dryness, where 79% reported immediate relief from dryness, 92% saw a reduction in dryness after two weeks of consistent use, and 100% said they experienced no irritation from VMAGIC. (61)

Testimonials listed on the company site range from very positive, with many women calling it a game changer in their LS maintenance regimen, to those who are pleasantly surprised and cautiously optimistic, saying that they are experiencing relief from it and looking forward to fewer flare-ups and a better quality of life. (61)

Coconut Oil

Coconut oil is a versatile natural oil composed mainly of saturated fatty acids. It contains lauric acid, capric acid, and caprylic acid, medium-chain fatty acids known for their potential antimicrobial and moisturizing properties. Coconut oil also contains vitamin E and other antioxidants that contribute to its possible benefits for skin health.

While coconut oil is not a primary medical treatment for lichen sclerosus, it may offer relief from specific symptoms through its ability to moisturize, soothe and protect the skin. You should use virgin coconut oil (VCO) instead of refined, as it's made by cold-pressing the liquid from the fresh part of coconut meat. This oil extraction method leaves the oil with a milky appearance. It prevents the loss of vitamin E, pro-vitamin A, and polyphenols, leaving its anti-inflammatory properties intact and promoting skin healing. (66)

A double-blind, randomized control trial comparing topical coconut cream with the steroid clobetasol propionate for treating oral lichen planus in 60 patients was published in 2022. Researchers concluded coconut cream is a safe, promising, and cost-effective alternative to treating OLP. Both treatments led to a significant reduction in burning sensation, with coconut cream reducing lesion size by 85%, compared to a 95% reduction in the steroid group. Though OLP and vulvar LS are not the same conditions, they do share some similarities, such as chronic inflammatory skin disorders with autoimmune components. (67)

Forum testimonials on Patient.info detail how many women incorporate coconut oil into their LS maintenance routine. (68) Most use it as a moisturizer or a protective barrier and apply it each time after using the toilet, many alternating between coconut oil, emu oil, or another favorite topical. Some women attributed irritation to its use, though this may be from a specific brand, as allergies to coconut oil are rare. (69) You may need a bit of trial and error to find the best brand for you.

Julva®

Julva® is a topical cream formulated and produced by Dr. Anna Cabeca, a women's health expert and author. As part of her line of health and wellness products designed to address women's health concerns, it is marketed as a restorative cream that's formulated with ingredients that support overall vaginal health and hormonal balance and address common problems, such as genital dryness and discomfort. (70)

The active ingredients and their corresponding skin benefits are:

  • DHEA (Dehydroepiandrosterone, also known as Prasterone) - a hormone precursor that can be converted into other hormones in the body that's sometimes used to support hormonal balance and skin health
  • Coconut Oil - provides moisturization and helps soothe dry, irritated skin
  • Emu Oil - known for its hydrating, anti-inflammatory properties
  • Vitamin E - an antioxidant that supports skin health and hydration
  • Shea Butter - a natural, soothing moisturizer

DHEA is a precursor hormone produced by the adrenal glands and, to a lesser extent, by the ovaries and testes. It can be enzymatically converted into other hormones, including estrogen and testosterone. This conversion takes place primarily in peripheral tissues, including the skin.

Concerning LS, the conversion of DHEA into estrogen and testosterone can positively impact the health and integrity of genital skin because these hormones play a crucial role in promoting tissue hydration, elasticity, and collagen production. Research has demonstrated that when topically applied, the hormonal conversion within the genital skin could potentially help address issues like dryness, irritation, and atrophy, all common concerns for LS patients. (71) Individual responses to DHEA vary, so it's best to consult your medical team before use.

According to on-site testimonials, many women find Julva® very nourishing and say that it helps counteract vaginal dryness, improving intimate pleasure.

One woman on Patient.info claimed that her labial adhesions were completely unfused once she added Julva® to her routine. (72) She detailed how this was done in conjunction with eliminating sugar, wheat, and yeast from her diet, taking oregano oil capsules, and femdophilus, lactobacillus reuteri, and lactobacillus rhamnosus, three probiotic strains proven to help with vaginal health. (73) She also checked her cortisol levels through daily exercise and meditation. So, while Julva® was not the only tool she used, it proved helpful for her.

For more info directly from the source, watch Dr. Anna Cabeca's appearance on the Healthy Skin Show, where she speaks about alternative remedies for LS. (74)

Lisepten

Lisepten is a line of topical products manufactured and distributed by Cloverleaf Farms (75). They produce a range of Lichen Sclerosus Relief Salves and Balms, putting their proprietary healing herbal blend in various bases, including coconut oil, jojoba oil, and hemp seed oil. They also offer an herbal tea formulated to provide internal support.

If needed, the salve can be used up to 6 times daily, and results can take 4-6 weeks.

Active Ingredients are detailed on their product info sheet and include (76):

  • Comfrey (Symphytum)- also known as knit bone for its ability to 'knit' damaged cells back together, it acts as an anti-inflammatory analgesic and offers fast-acting tissue healing benefits (77)
  • Calendula - an antibacterial, antifungal, and antiseptic herb known for its wound-healing and infection-fighting properties
  • Chickweed (Stellaria media)- has been proven to offer a wide range of pharmacological activities, including fast-acting relief from dermal itching, commonly associated with LS (78)
  • Lavender (Lavandula) - a natural antibacterial and antiseptic aid in wound healing
  • Red Clover (Trifolium pratense) - a topical anti-inflammatory with some phytoestrogen effects, shown to aid vaginal and sexual health (79)
  • Plantain - helps stop the associated itch.
  • Witch Hazel (Hamamelis) - an astringent that dries the skin without over-drying and acts as a protection against infection

From on-site customer testimonials, women say that it makes a great natural alternative to steroids and that it keeps flare-ups to a minimum. One woman expressed a sentiment that I think many women with LS have felt, "If you suffer from LS, there comes the point where you will try anything. Please try this before trying the other methods, or if, like me, you have already tried everything else." (80)

On Amazon.com, one review stated that it's not a miracle cure, but it is very moisturizing and soothing, while another user found it pricey and preferred cheaper alternatives. (81)

Manuka Honey

Manuka honey is a type of honey produced from the nectar of the manuka bush (Leptospermum scoparium) native to New Zealand and Australia. It is known for its antibacterial and wound-healing abilities, including hydration-promoting tissue regeneration. Manuka honey contains bioactive compounds such as methylglyoxal (MGO) and hydrogen peroxide, contributing to its therapeutic effects. (82)

Therapeutic-grade manuka honey is produced through careful beekeeping practices, proper harvesting, and quality control measures to ensure its potency and effectiveness for medical and therapeutic use.

After harvest, it's graded based on its methylglyoxal (MGO) content level. The higher the MGO level, the stronger the potential therapeutic effects. Different grading systems exist, but one commonly used is the Unique Manuka Factor (UMF) rating, which indicates the honey's non-peroxide activity. When dealing with topical application on damaged skin or for wound care, you want to aim for a UMF 10+ to 20+.

New research suggests that the AhR-activating properties of manuka honey could have broader clinical implications in a range of inflammatory skin conditions. (83) When AhR is activated, it can trigger molecular responses that affect gene expression and cellular processes. AhR regulates the body's response to various environmental pollutants, dietary compounds, and endogenous molecules. These responses can affect cellular functions, including immune regulation, metabolism, and detoxification pathways.
One testimonial on Earth Clinic said that strong manuka honey relieved itch instantly. (84) Others found it immediately soothing and great for sealing and healing tears, big and small. (85)

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