Lichen Sclerosus: Understanding Your Diagnosis and the Role of Pelvic Floor Physical Therapy
You’ve been told it’s “just a yeast infection” or simple skin irritation—but the itching, burning, or pain keeps coming back. Maybe treatments help temporarily, or maybe they don’t help at all. Maybe some days it is better and some days it is worse. You’ve tried to ignore it, pushed through discomfort, or felt frustrated that no one has given you a clear answer. If this sounds familiar, you’re not alone—and you’re not imagining it. This is common with people experiencing Vulvar lichen sclerosus (VLS). The path to treating VLS can be long, winding, and frustrating. In this article, we’ll walk through possible causes, why symptoms persist, and how a more comprehensive, whole-body approach, that includes physical therapy, can help you finally find relief.
Crystal vulva
What Is Lichen Sclerosus (LS)?
Lichen sclerosus is defined as a chronic inflammatory disease that causes skin changes, typically scarring and hardening of the skin. The cause of LS is unknown, though it can be linked with onset of following stress or a traumatic event either physically or emotionally. It most commonly affects the genital region in both males and females, though it affects females more. In females, it presents visually as white, shiny plaques at the clitoris, vulva, or perineum. Symptoms include pelvic pain, itching, pain with urination, and pain with penetration (dyspareunia). In males, lichen sclerosus visually presents as white penile lesions or plaques and thickening of the foreskin. Physical symptoms in males also include itching, pain with urination, erection, and penetration.
Vulva from Netter MD Anatomy Book
Is Lichen Sclerosus an Autoimmune Disease?
The cause of lichen sclerosus is unknown, however, it is linked with chronic inflammation and dysregulation of the immune system. Currently, it is associated with other immune diseases, but is not considered an autoimmune disease itself. The cause of lichen sclerosus is unknown and still not much is known about this disease.
Lichen Sclerosus Symptoms
Lichen sclerosus can affect males and females of all ages, however, it most commonly affects females in pre puberty and menopause and in young and adult aged males. Lichen sclerosus can vary in severity from mild to severe. It can be treated but not cured and is best diagnosed with a biopsy. It is important to seek treatment if you notice changes in the skin and that symptoms are not improving with over the counter creams and medicines. Below is what early to severe lichen sclerosus symptoms look like:
Early stage lichen sclerosus:
White lesions
Redness
Itching
Pain
Mild Stage to severe lichen sclerosus
White lesions (hyperkeratinosis) progressing and accompanied with itching
Atrophic skin
Lacerations or cuts in the skin
Bruising purple/blue discoloration
Severe lichen sclerosus
Scarring of the vulva and clitoris
Narrow vaginal opening
Thickening and hardening (sclerosus) of the foreskin or clitoris
Plaques, fissures, or ulcers appear and are not healing or recurring
Complications present as difficulty with urinating and narrowing of the urethra and urethral opening.
What Causes Lichen Sclerosus?
Unfortunately, the cause of lichen sclerosus (LS) is unknown, It is also underdiagnosed and undertreated due to its complexity and presentation. LS is also unique in that it overlaps several specialties in medicine and can be overlooked or underdiagnosed. Dermatology, urology, and urogynecology can all diagnose and treat LD. While LS is not considered an autoimmune disease, it is linked to chronic inflammation and autoimmune diseases. In fact, about 20-30% of people with LS report an autoimmune disease. Contributing factors for lichen sclerosus include hormonal influences, traumatic events ranging from persistent scratching or itching to surgical procedures to sexual abuse, and certain medications. Other factors influencing LS include increased or persistent stress. Fragrances, detergents, and other skin irritants can also contribute to the worsening of LS. While it can be triggered by several things, it is also important to note that LS is treatable through a multidisciplinary approach of professionals such as nutritionist or dietician, physician, physical therapist, and mental health therapists. This team can help you address all angles of LS.
Lichen Sclerosus VS Yeast Infection
Lichen sclerosus has overlapping symptoms with other diseases such as yeast infection, candida infection, lichen planus, eczema, psoriasis, and autoimmune blistering dermatosis. These diagnoses also share symptoms such as pain, itching, redness, irritation, and blistering. The best way to diagnose LS is through a biopsy. This is the gold standard for diagnosing this disease and being able to treat it appropriately. Sadly, the average person has symptoms for 5 years before getting a diagnosis of LS and receiving treatment. This delay in care is because providers are unfamiliar with LS due to how uncommon it is. LS is underdiagnosed and undertreated due to providers not having knowledge or knowing little about the disease. Those with LS are often dismissed or incorrectly treated resulting in increased pain and worsening of symptoms.
Lichen Sclerosus Diagnosis & Treatment
Lichen sclerosus can be diagnosed by a urologist, urogynecologist, dermatologist, and gynecologist. It has overlapping specialities due to its location and nature of symptoms. To accurately diagnose LS, providers take into consideration the visual presentation of the disease and a biopsy of the affected tissue. It is important to note that lichen sclerosus cannot be cured; it can only be treated. Upon diagnosis, the recommended treatment is a potent to ultra potent corticosteroid ointment for 3 months. This greatly improves symptoms in 75-90% of people with LS. Once symptoms are improved, your physician will help guide weaning of the steroid until a maintenance program has been reached or the symptoms completely resolve. Other treatments for LS include calcinerium inhibitors and lifestyle changes including consuming an anti-inflammatory diet and managing stress and regulating the nervous system appropriately to improve symptoms. Daily activities such as wearing silk underwear, avoiding soaps and lotions with fragrance or irritants significantly help with symptoms. Pelvic floor physical therapy can help educate on and reinforce proper bowel and bladder toileting habits and can help to teach you how to coordinate the muscles to improve blood flow and healing. Lichen sclerosus is best treated with a whole body approach that includes medications, nutrition, and physical therapy to ensure the disease moves into remission and flair ups are minimized. At Summus we see you and hear you and will develop a treatment plan with your input to help you find relief of your symptoms.
Lichen Sclerosus and the Pelvic Floor
Living with lichen sclerosus can be frustrating because it requires ongoing treatment to prevent it from worsening. It is well studied that medications and pelvic health physical therapy are helpful and necessary in providing relief. Physical therapy does not replace medical treatments, but rather supports and works alongside it helping to provide relief. Because LS causes pain and irritation this can cause muscle guarding and tension to build up which can impact the nerves, blood flow, and cause pelvic pain from trigger points or overactive/tight muscles. Pelvic health physical therapy can help in the following ways to provide relief:
Education regarding skin sparing techniques and habits
Scar and skin mobilization
Understanding healthy bowel and bladder habits to improve pain and pelvic floor muscle function.
Improve trigger points and overactive or tight muscles contributing to pain and impaired blood flow.
Improve blood flow.
Improves nervous system regulation to decrease stress hormones contributing to pain and inflammation.
Completing a full exam of the low back, hips, and pelvis can improve movement which can help improve tension and pain contributing and worsening symptoms of LS. If you are curious about how physical therapy can help you, please do not hesitate to reach out for a conversation.
How Pelvic Floor PT Can Help
If you are experiencing any symptoms of LS or have LS, our therapists at Summus Rehabilitation can help provide relief. This can be a frustrating, lonely, and confusing experience and we are here for you. At Summus we will combine various treatment methods such as manual therapy, education, postural education, healthy toileting habits for bowel and bladder, and movement patterns to help you get relief of symptoms and maintain those improvements made in therapy. Physical therapy for lichen sclerosus can help decrease pain from tight/ overactive pelvic floor muscles, improve blood flow, improve tissue mobility, elasticity, and scarring, and improve and prevent narrowing of the vaginal opening. Manual therapy techniques such as trigger point release of muscles, soft tissue mobilization, instrument assisted soft tissue mobilization, and/or functional dry needling all help improve the skin conditions. Additionally, we can educate you on the use of self release tools for the pelvic floor such as dilators or a pelvic wand to help maintain tissue elasticity and prevent narrowing of the vaginal opening. The goal of pelvic floor PT with lichen sclerosus is to support medical management, decrease symptom severity through regulating the nervous system and decreasing muscle guarding so that you return to daily activities with greater comfort and confidence. We know this is a sensitive area and a sensitive conversation and we are here to listen, support, provide answers, and give relief of symptoms!
Vulvar Lichen Sclerosus: Your Questions, Answered
Is lichen sclerosus contagious?
No, lichen sclerosus is not contagious. It is a chronic inflammatory skin condition that is believed to have an autoimmune component. You cannot contract this disease from contact with others.
Can you die from lichen sclerosus?
No, lichen sclerosus is typically localized to the genitals. Rarely does it present on other areas of the body. It is, however, a chronic inflammatory condition and thus should be treated seriously in the event that other autoimmune diseases are present.
What causes lichen sclerosus to flare up?
Lichen sclerosus is most likely to flare up during times of increased stress. It can also be triggered by traumatic events such as an accident, fall, surgery, or sexual abuse.
Is lichen sclerosis the same as lichen sclerosus?
Lichen sclerosus is a disease specific to a disease that affects the skin and genitals. The term sclerosis is a general term to describe skin or tissue hardening or stiffening and is not a specific diagnosis or disease.
Is lichen sclerosus an autoimmune disease?
No, lichen sclerosus has not been deemed an autoimmune disease. It does involve the immune system and it is mediated by an immune response.
Can Lichen Sclerosus Lead to Cancer?
Lichen sclerosus is not cancer, however, the chronic inflammation and scarring can cause changes in the cells and lead to skin cancer. Because of the chronicity of the disease, it is important to find a provider to follow up with to monitor it and provide treatment as needed.
What foods should you avoid if you have lichen sclerosus?
We are what we eat! If you have lichen sclerosus, we recommend talking to a registered dietician or nutrition coach to develop an appropriate diet to improve the inflammatory effects of LS. It is advised to avoid high oxalate foods and to follow a general anti-inflammatory diet to improve inflammation and irritation associated with LS. Please consult with your physician or a nutritionist or dietician for further and more specific guidance.
What is the main symptom of lichen sclerosus?
The main symptoms include skin changes in the genitals and persistent itching and burning that is not relieved with over the counter creams.
How do you treat lichen sclerosus in the vulva?
Lichen sclerosus of the vulva is treated with corticosteroids, lifestyle changes (using gentle cleansers and undergarments), physical therapy, and consistent monitoring.
Lichen Sclerosus Support at Summus Rehabilitation
Our therapists at Summus Rehabilitation can help you navigate care and relief of lichen sclerosus. If you suspect you have this or you have a confirmed diagnosis, please give our office a call and we can get you started on a path to relief. This is not something you have to suffer with alone and we are here to help you through it!
*Please note this is general information and not to be used personally. Please consult your healthcare team for determination and appropriate use of treatment for VLS.
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