What Everyone with Lichen Sclerosus Needs
By Dr. Jaclyn Lanthier
Founder, The Lost Labia Chronicles
Lichen sclerosus is a chronic, inflammatory skin condition that the medical community considers an autoimmune disease. While it can affect the extragenital skin (e.g., abdomen, chest), it primarily affects the genitals (i.e., the vulva, the perianal area, and the penis). Vulvar lichen sclerosus (VLS) can cause symptoms like itch and pain. It can cause the skin or areas of the genital skin to appear ashy or white, depending on the colour of your skin. The vulvar skin can also change in texture, appearing thickened, waxy, wrinkled, etc. Folks with VLS may also experience architectural changes; this is where parts of the vulva can stick to other parts of the vulva (fusing), or a part of the vulva can completely be reabsorbed by another part of the vulva (resorption).
The average time it takes to get diagnosed with VLS is approximately 5-15 years. That is a long time for folks to suffer alone with distressing symptoms.
Imagine going 15 years, feeling like you are losing your mind. Being chronically dismissed by healthcare providers telling you you’re just stressed. Living with an unbearable and relentless itch that can cause insomnia. Trying to push through excruciating tearing and pain during penetrative sex; feeling isolated from romantic and/or sexual partners.
Then, you finally get a diagnosis, only to be given little to no education about VLS. Many doctors do not take the time to explain to their patients what VLS is, how it is diagnosed, what their treatment options are (including explaining the benefits and risks of the treatment), how to apply/use their medication, the risk for vulvar cancer and how to keep it low.
Further, many doctors do not provide any mental health and support resources. In my experience co-hosting LS virtual meetups and doing my own 1:1 individualized LS peer support calls, the majority of patients leave the doctor’s office with a prescription for Clobetasol and vague instructions on how to use it. A lot of patients do not even treat because their doctor told them ‘it’s just a skin thing’ and they didn’t understand how serious it can be if/when it goes untreated.
The lack of education and support resources causes harm. It means some people will choose not to treat, treat improperly, and/or their mental health plummets and they are left alone in significant distress.
To help bridge this gap between provider and patient, I decided to create an eBook that goes over LS fundamentals. I launched this eBook in 2021; however, the field of medicine is constantly evolving, and, I’m constantly learning from the medical community and the LS community. As such, I recently revised this eBook and it is now bigger and better than before.
Best of all, it is completely free! It was important to me that this information be accessible to anyone with LS.
In this eBook, I go over education fundamentals. This includes a review of the medical on different treatment options, vulvar cancer and how to lower your risk, adjunct therapies and things to consider, etc. In my second chapter, I discuss how to choose a treatment plan that is right for you. I provide targeted advice to help walk you through what can be a difficult and confusing decision-making process. Finally, in chapter 3, I share how to build a unique and diverse support team to help guide and support you on your LS journey. Of course, the eBook also includes heaps of LS resources that you may want to tap into.
If you have VLS or know someone with VLS and want to learn more to better support them, you’ll want to download this eBook.
If you are a healthcare provider (e.g., family doctor, gynecologist, dermatologist, pelvic floor physical therapist, naturopath, etc.), consider downloading the eBook and sharing it with your patients and your network.
Please share this post and eBook widely so more folks can get the information and support they need.
Questions? Contact Jaclyn at firstname.lastname@example.org
Jaclyn is the 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.