“You have lost the majority of your labia minora”, my doctor said to me casually. 

I lost my…what?

Yes, you read that right. That day, when my doctor told me about my lost labia, I was diagnosed with lichen sclerosus. I had no idea what that meant. Unfortunately, vulvovaginal and pelvic health conditions are rarely, if ever, discussed in sex education. So what exactly is lichen sclerosus?

Lichen sclerosus is a chronic inflammatory skin disease that typically affects the genitals such as the vulva. Less commonly, it can affect the extragenital skin such as thighs, abdomen, and chest. It is considered to be an autoimmune disease with a genetic component (although that component has yet to be fleshed out). It can affect anyone with a vulva of any age. Due to the area it tends to affect – i.e., the vulva and perianal regions – it sits at the intersection of gynecology and dermatology. For a more in depth explanation of lichen sclerosus, check out my video on what lichen sclerosus is here. 

Signs of lichen sclerosus include whitening of the vulvar area, thickened white plaques/patches on the vulva, bruising, and changes to the vulvar anatomy. For example, the clitoral hood can fuse to the clitoral glans, the labia minora can fuse to and even reabsorb into the labia majora, etc. Symptoms include itch, which may be sporadic and mild or severe and persistent, pain with sex, tearing during sex, fissures, difficulty urinating or having a bowel movement, and burning. 

Having lichen sclerosus means you carry a 2-6% risk of developing “malignant squamous cell neoplasia of the vulva, including invasive squamous cell carcinoma and vulvar intraepithelial neoplasia…” (Lee and Fischer, 2018). However, a 2015 study by Lee, Bradford, and Fischer suggests the proper use of steroids *may* help in the prevention of vulvar cancer for those with lichen sclerosus. For further info on vulvar cancer and LS research, click here.

Lichen sclerosus is diagnosed either by clinical examination (if both signs and symptoms are present and the doctor is confident in their diagnosis) or via a vulvar punch biopsy. 

The gold standard for treatment is ultrapotent topical corticosteroids, with the second line treatment being topical calcineurin inhibitors. Platelet-rich plasma and energy-based modalities such as CO2 fractional laser, phototherapy, etc., are still experimental and require more research. Complementary/adjunct treatments include pelvic floor physiotherapy, mindfulness and meditation, nutrition therapy, emollients/barrier creams, sex therapy, counselling, etc. For more details on these treatments, you can check out my free eBook Three Key Things To Have In Place When You Have Vulvar Lichen Sclerosus.

Remission is possible with appropriate treatment and lifestyle changes. Clinical remission occurs when there are no more signs of active disease on the vulva. Generally, there is also a reduction in symptoms with remission. You may have zero symptoms or mild symptoms with remission.

Lichen sclerosus does NOT just affect the vulva; it also has a deep impact on one’s mental health. It is not uncommon for those with vulvar lichen sclerosus to feel deeply ashamed, depressed, angry, and embarrassed. People with lichen sclerosus often experience profound grief. Anxiety can take a strong hold over the mind and, consequently, the body. 

Personally, getting diagnosed with lichen sclerosus led to serious and debilitating health anxiety. My nervous system was chronically charged and it was near impossible for me to relax. Of course, this only made my symptoms worse and slowed my healing progress.

It is as important to address and heal the mental health aspects of lichen sclerosus as it is the physical. For the mental health piece, I created The Vagus Nerve and Lichen Sclerosus Workshop to help you learn how to stimulate your vagus nerve in order to help reduce mind-body stress, and therefore help manage your lichen sclerosus. In this workshop, you will learn all about the autonomic nervous system and the impact of stress on lichen sclerosus, the importance of the vagus nerve, and how to stimulate the vagus nerve in order to help manage lichen sclerosus (in addition to your treatment plan). It will be informative and interactive – get ready to learn, have fun, and heal!

Register today for The Vagus Nerve and Lichen Sclerosus Workshop and subscribe to The Lost Labia Chronicles newsletter here for more LS content.

Questions? Contact Jaclyn at jaclyn@lostlabia.com

Jaclyn is founder of The Lost Labia Chronicles, a content hub for information about all things lichen sclerosus. Jaclyn is passionate about disseminating evidence-based information and addressing mental and sexual health with Lichen Sclerosus. She is on the executive board of Lichen Sclerosus Support Network and a patient representative for the Core Outcomes for Research in Lichen Sclerosus (UK). She also spends a lot of her time in the LS communities to help provide support and information to folks with LS. Jaclyn did her Ph.D. in philosophy of neuroscience at Western University with a focus on the role of systematic review and meta-analyses for corroborating information about the mind-brain.