A comprehensive overview of symptoms, diagnosis, treatment, skin care, cancer risk, and daily management strategies based on a presentation by Dr. Audrey Rutherford. This article will specifically address Extragenital and Perianal Lichen Sclerosus and provide helpful information.
Introduction to Extragenital and Perianal Lichen Sclerosus
Most conversations about lichen sclerosus (LS) focus on the vulva and/or penis. But what happens when LS appears elsewhere on the body? What if symptoms develop around the anus? And why do some forms of LS carry cancer risk while others apparently do not?
These are questions many patients ask, yet information about extragenital and perianal lichen sclerosus remains surprisingly difficult to find.
This blog is based on a presentation by vulvar dermatologist Dr. Audrey Rutherford delivered during the 2026 Lichen Sclerosus Support Network Holistic Healing Summit. Throughout her presentation, Dr. Rutherford explored how extragenital LS differs from genital LS, how perianal LS fits into the picture, what these conditions look like, how they are diagnosed, current treatment options, and practical day-to-day strategies patients can use to care for their skin. The goal of this article is to summarize and expand upon those key takeaways in a patient-friendly format while remaining faithful to the information presented. Naturally, this is a high-level blog, so if you want the deep dive and all the images and explanations from Dr. Rutherford herself, you can always purchase the replay here.
Understanding Extragenital and Perianal Lichen Sclerosus
Dr. Rutherford emphasized that perianal LS and extragenital LS should not automatically be grouped together. While both fall under the broader umbrella of lichen sclerosus, they behave differently and have different considerations when it comes to symptoms, treatment, scarring, and cancer risk. Keep reading to learn what differentiates the two.
Extragenital LS
Extragenital lichen sclerosus refers to LS that develops outside the genital and perianal regions. Like genital LS, it is a chronic immune-mediated inflammatory skin condition that can cause white patches, changes in skin texture, and scarring.
While many patients think of LS as exclusively a vulvar or genital condition, Dr. Rutherford noted that extragenital lesions can occur almost anywhere on the body. Common sites include the back, shoulders, neck, chest, and abdomen, though lesions can occur elsewhere as well. Importantly, extragenital LS most often occurs alongside genital LS. Only about 6% of cases appear to involve extragenital disease without genital involvement.
Perianal LS
Perianal LS behaves much more like genital LS than extragenital LS.
In medical literature, genital and perianal disease are often grouped under the term anogenital lichen sclerosus because they share many similarities. Perianal LS is more likely to cause symptoms such as itching, burning, pain, fissures, and skin changes (compared to extragenital LS). It is also managed more similarly to genital LS because of concerns related to long-term cancer surveillance and scarring.
How Common Is Extragenital LS?
Researchers still have much to learn about the true prevalence of extragenital LS, but several interesting patterns have emerged.
Women appear to be affected more frequently than men, similar to many autoimmune and inflammatory conditions. Approximately half of patients with extragenital LS also have genital LS, while only 15–20% of people with genital LS develop extragenital lesions.
Interestingly, Dr. Rutherford noted that nearly 30% of patients with extragenital LS are diagnosed with body lesions before genital disease is recognized. In some cases, a dermatologist identifies suspicious lesions elsewhere on the body and only later discovers previously undiagnosed genital LS.
This highlights a couple of important lessons: 1. LS does not always follow the textbook. 2. Stigma around the genitals likely contributes to delayed diagnoses of penile, vulvar, and perianal LS. If more dermatologists routinely checked the genitals (and not just the extragenital skin) may catch anogenital LS earlier.
What Does Extragenital LS Actually Look Like?
One challenge with extragenital LS is that it does not always look the way we might expect it to.
According to Dr. Rutherford, early lesions often begin as small white or pearly papules that gradually merge together into larger patches or plaques. Over time, patients may notice white patches, pearly or opalescent spots, changes in skin texture, thin or wrinkled skin, bruising-like discoloration, or areas of darker pigmentation surrounding lesions.
Some lesions may appear bright white, while others can look gray, pink, or even lavender, depending on an individual’s skin tone and the location of the lesion. Because of this variation, extragenital LS does not always fit the stereotypical image patients may have in mind when they think of lichen sclerosus.
*Photographs taken from Dr. Rutherford’s talk. Her talk contains so many other images of cases of LS across the body – to access the talk, click here.
One of the most important clues is texture. Dr. Rutherford emphasized that LS is not simply a pigment disorder. While conditions such as vitiligo can cause areas of skin lightening, the skin texture itself typically remains normal. With lichen sclerosus, the skin often feels and behaves differently. Medical literature frequently describes the characteristic appearance as a “cigarette paper” texture, while Dr. Rutherford compared it to parchment paper or crinkled wrapping paper.
People with extragenital LS may also notice areas that bruise more easily. These purple-red spots can occur because inflammation weakens the skin and makes small blood vessels more susceptible to injury. Another feature sometimes seen in extragenital LS is the presence of comedone-like openings that resemble tiny blackheads or clogged pores. These openings are thought to result from inflammation and scarring around hair follicles.
Why Cancer Risk Appears Different
Perhaps the most reassuring point from Dr. Rutherford’s presentation is that there have been no confirmed reports of malignant transformation arising from extragenital LS.
In contrast, perianal LS is generally managed similarly to genital LS because it falls within the anogenital category and carries concerns regarding long-term cancer surveillance.
Researchers believe the difference may be related to the unique environment of genital and perianal skin. These areas experience chronic friction, moisture, microbiome differences, and distinct immune signaling that may contribute to cancer development over time. Skin elsewhere on the body simply exists in a different biological environment. However, proper and consistent treatment, good skin hygiene, and regular follow-ups can help lower the risk.
The Koebner Phenomenon: Why Friction Matters
One fascinating concept discussed during the presentation was the Koebner phenomenon.
This refers to the tendency for new lesions to develop in areas of friction, trauma, surgery, or injury. Patients may notice lesions forming beneath bra straps, around waistbands, after radiation therapy, or near surgical scars.
Not everyone experiences this phenomenon, but it offers another reminder that skin injury and inflammation may play an important role in disease expression. Kathy and I (Jaclyn) have also heard community members describe lesions developing in areas such as bra straps and waistbands, which aligns with what Dr. Rutherford discussed.
Why Extragenital LS Is Often Missed
One of the biggest challenges with extragenital LS is that many lesions are asymptomatic.
Imagine developing a small white patch on your upper back. It doesn’t itch. It doesn’t hurt. You can’t easily see it in the mirror. Years may pass before it is noticed by you or a healthcare provider.
This is one reason extragenital LS is likely underrecognized. Another is that many healthcare providers do not routinely examine the entire skin surface when patients present with genital LS. A gynecologist may focus on the vulva. A dermatologist may focus on a specific concern. Unless someone looks carefully, lesions elsewhere on the body may go unnoticed.
Another lesson: dermatologists play an important role in overall health, and a yearly, full-body skin check is something to consider advocating for. I (Jaclyn) have never had a full-body check, but I’m making it my 2026 goal to 1. Get a dermatologist and, 2. Request a full-body skin check.
Conditions That Can Mimic Extragenital LS
Another reason diagnosis can be difficult is that several conditions can closely resemble extragenital LS.
Lichen planus may produce similar white or violaceous plaques. Morphea can create areas of whitening and sclerosis. Vitiligo can cause striking white patches. Idiopathic guttate hypomelanosis, chronic radiation dermatitis, and tinea versicolor may all enter the differential diagnosis as well. Some patients may even have multiple conditions simultaneously.
This is one reason Dr. Rutherford strongly encourages patients with suspected extragenital LS to seek evaluation from a dermatologist familiar with inflammatory skin disease whenever possible.
Daily Care for Extragenital LS
Gentle Skin Care
One of the strongest practical messages throughout the presentation was surprisingly simple: be gentle.
Dr. Rutherford recommends fragrance-free, soap-free cleansers, lukewarm water, avoiding scrubbing, patting the skin dry, and moisturizing regularly with fragrance-free emollients. These measures help support the skin barrier and reduce unnecessary irritation.
She also encourages patients to think of themselves as having sensitive skin. Long hot showers, heavily fragranced products, fabric softeners, and harsh cleansers may all contribute to irritation.
Diet and Lifestyle Considerations
While diet is not a cure for LS, Dr. Rutherford discussed several lifestyle strategies that may support overall skin health.
She highlighted omega-3 fatty acids, vitamin D, and vitamin E as nutrients that support skin barrier function. She also recommended minimizing highly processed foods and diets high in refined carbohydrates and sugars. The Mediterranean diet, in particular, has been associated with lower levels of systemic inflammation and may be a reasonable dietary pattern for many patients.
Daily Care for Perianal LS
Because the perianal region experiences constant friction, moisture, bowel movements, and wiping, perianal LS often requires additional management strategies.
Preventing Constipation
Dr. Rutherford recommends focusing on soft, regular bowel movements through hydration, adequate dietary fiber, and avoiding constipation whenever possible. Stool softeners or non-habit-forming laxatives may be helpful for some individuals. She is also a strong advocate for proper toileting posture, including using a footstool to improve positioning during bowel movements.
Hygiene and Wiping
When it comes to hygiene, bidets and peri bottles can be valuable alternatives to aggressive wiping. If toilet paper is used, she recommends avoiding heavily processed, fragranced, or plush varieties that may contain additional additives and preservatives. During flares, some patients may even find soft cotton cloths more comfortable than traditional toilet paper.
Barrier Care
Barrier ointments play an especially important role in perianal LS.
Dr. Rutherford’s preferred option is zinc oxide because it functions as a physical barrier while also offering mild antimicrobial and anti-inflammatory properties. Zinc oxide is in most diaper rash creams/ointments in the baby section of your pharmacy (e.g., Zincofax (what I use), Aquafor has one, etc.). Petrolatum jelly (e.g., Vaseline) is another option that protects from friction while minimizing exposure to additional ingredients. Some patients may also find silicone-based lubricants helpful as protective barriers.
Importantly, she cautions against assuming that “natural” products are automatically safer. Ingredients such as botanicals, beeswax, and essential oils can still trigger irritation or allergic reactions.
Sitz Baths and Flare Management
Dr. Rutherford also discussed the potential benefits of sitz baths and cooling products during flares. Storing medications or barrier products in the refrigerator can provide a soothing cooling sensation that may temporarily reduce the perception of itching and burning.
Treatment Options for Extragenital LS
Treatment decisions depend on symptoms, lesion extent, cosmetic concerns, and patient goals.
First-line therapy typically involves topical corticosteroids, followed by topical calcineurin inhibitors. The image below is adapted from Dr. Rutherford’s talk and is meant for illustrative purposes on the application of topical corticosteroids for extragenital lichen sclerosus.
A fingertip unit (FTU) is a standardized way of estimating how much topical medication to apply. One FTU is the amount of cream or ointment squeezed from a standard tube along the length of an adult fingertip, from the tip to the first finger crease.
Using the correct amount of medication can help ensure effective treatment while minimizing waste and reducing the risk of side effects. The examples shown in this infographic illustrate how FTUs may be used to estimate treatment amounts for larger body areas.
General examples shown in this graphic:
- One hand: approximately 1 FTU
- One arm: approximately 3 FTUs
- One foot: approximately 2 FTUs
- One leg: approximately 6 FTUs
- Face and neck: approximately 2.5 FTUs
- Front and back of the trunk: approximately 14 FTUs
- Entire body: approximately 40 FTUs
Important Note
This infographic is provided for educational and illustrative purposes only. The amount of medication that is appropriate for you may vary depending on your diagnosis, the medication being used, the body area being treated, and your healthcare provider’s recommendations.
Always follow your clinician’s instructions regarding how much medication to apply, where to apply it, and how often to use it. If your healthcare provider’s guidance differs from the examples shown here, their instructions should take precedence.
Phototherapy, particularly UVA1 phototherapy, has some of the strongest evidence for extragenital LS and is considered first-line in parts of Europe. Narrowband UVB is often easier to access and is commonly used by dermatologists.
For more extensive disease, systemic therapies such as methotrexate and mycophenolate mofetil currently have the strongest evidence. Other therapies being explored include hydroxychloroquine, retinoids, JAK inhibitors, laser treatments, platelet-rich plasma, and additional emerging therapies. Research in this area continues to evolve rapidly.
Treatment Options for Perianal LS
Although this presentation focused primarily on extragenital LS, Dr. Rutherford emphasized that perianal LS is generally managed similarly to genital LS because it shares a similar microenvironment, symptom profile, scarring risk, and cancer considerations. For this reason, many of the same principles used in vulvar LS management also apply to the perianal region.
Topical corticosteroids remain a cornerstone of treatment. However, Dr. Rutherford noted that the perianal skin can sometimes be more susceptible to thinning than vulvar tissue. Because of this, she may incorporate lower-potency corticosteroids or topical calcineurin inhibitors earlier in treatment than she would for vulvar LS.
In terms of “how much should I use”, you might be surprised to learn Dr. Rutherford recommends about the size of half of a small lentil (see image below–just the white, not the blue included). You need only the tiniest amount of high-potency topical corticosteroid for the perianal area alone.
Treatment of perianal LS also extends beyond medication alone. Because the area is exposed to ongoing friction, moisture, stool passage, and wiping, management often includes barrier protection (e.g., zinc oxide creams such as Zincofax or Aquaphor), constipation prevention, gentle hygiene practices, and strategies to reduce skin irritation and trauma.
Final Thoughts
The most important message from Dr. Rutherford’s presentation may be that extragenital LS is real, it is often overlooked, and it deserves recognition.
Although extragenital LS generally does not appear to carry the same cancer risk as anogenital disease, it can still significantly affect quality of life, body image, and emotional well-being. Perianal LS, meanwhile, should generally be approached much more similarly to genital (vulvar or penile) LS with respect to treatment (e.g., topical corticosteroids or calcineurin inhibitors) and long-term monitoring.
Most importantly, patients should know they are not alone. Education, support communities, knowledgeable healthcare providers, and ongoing research continue to improve our understanding of these lesser-known forms of lichen sclerosus. As Dr. Rutherford reminded attendees, this is a team sport, and no one has to navigate it alone.
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Support Resources
P. S LSSN is Expanding Our Support: Introducing AboutLichenPlanus.com
At LichenS Support Network (LSSN), our mission has always been to provide trusted education, resources, and community support for people living with chronic vulvar and skin conditions. We’re excited to share that we’re expanding our efforts beyond lichen sclerosus to include other closely related conditions, including lichen planus (LP) and lichen simplex chronicus (LSC).
To support this growing community, we’ve launched AboutLichenPlanus.com — a dedicated resource designed to help patients and caregivers better understand and manage lichen planus.
On the site, you’ll find:
- Easy-to-understand information about lichen planus and its various forms
- Expert educational resources
- Patient stories and lived experiences
- Treatment and management information
- Videos, blogs, and downloadable resources
- Opportunities to get involved in research and advocacy initiatives
If you or someone you know has lichen planus, we encourage you to explore the site, share it with others who may benefit, and help us spread awareness.
We’re also inviting individuals living with lichen planus to participate in our patient survey. Your experiences can help identify unmet needs, improve educational resources, and guide future research and advocacy efforts.
Visit AboutLichenPlanus.com to learn more, and please share it with anyone affected by lichen planus or related conditions. Together, we can build a stronger, more informed, and more supported community.
