New Updates in Vulvar Lichen Sclerosus

Lichen sclerosus (LS) is a chronic, inflammatory skin condition affecting the skin. While it can affect the extragenital skin (e.g., breast, abdomen), it more commonly affects the genital skin
(e.g., vulva, perianal area, and penis). Vulvar lichen sclerosus (VLS) affects the vulva and can cause symptoms such as vulvar itch, burning, soreness, stinging with urination, and pain with
sexual activity. Clinical signs (i.e., things that can be seen by looking at the skin) include changes to the texture of the skin (e.g., thickened areas of skin, skin that resembles wax paper), changes to the color of the skin (e.g., loss of pigmentation), and changes to the physical appearance of the skin (e.g., clitoral hood fusing over the glans clitoris or labia minora fusing to the labia majora). It is diagnosed via clinical examination or a punch biopsy. Gold standard treatment is topical corticosteroids, which are used more frequently initially and tapered to a maintenance dose of 1-3x per week for life.
For awhile, things felt abit stagnant in terms of advancing our understanding of VLS; however, there has been a recent burst of research, leading to new insights and the potential for more
targeted treatments and interventions to support the physical, emotional, and sexual well-being of people with VLS.

How VLS Develops and Progresses
Some of the biggest advances in understanding VLS come from genomics research. Genomics helps scientists understand how our bodies function, how we inherit traits from our parents, and
even how diseases can develop. Here’s what we now know. Initially, there are unspecific inflammatory changes in the skin–which may be caused by infections, trauma, or medications– followed by the overexpression of miR-155 (microRNA that controls certain genes in our cells), which leads to specific immune responses and skin hardening. Specific immune system signals called Th1 cytokines are
involved in the disease process. The skin shows an abnormal immune cell invasion in the upper layers. As the condition progresses, the skin may appear thinner or thicker on the topmost superficial layer, with significant skin thickening in the layers immediately below, blood vessel alterations, and loss of skin structures. In later stages, the skin can lose pigment, as the pigment-producing cells, melanocytes, become damaged by inflammation. Autoantibodies against a skin protein called EMC1 activate enzymes that contribute to skin hardening. Other proteins like TGF-β, BMP2, and galectin-7 also contribute to increased abnormal collagen production in the skin. The skin's blood vessels become hardened and inflammation can lead to stress in the skin cells, potentially impacting cancer-related genes. The exact order of events and how they interact are not entirely clear yet (De Luca et al., 2023; Tan et al., 2021).

Treatments
Identifying the cells, proteins, and molecules involved in the development and progression of VLS is fundamental for the development of more target treatments, therapies, and interventions.
Multiple ongoing clinical trials are investigating potential new treatments. For example, there are ongoing clinical trials in North America looking at the potential for a topical Janus Kinase
Inhibitor (Ruxolitinib Cream) as a more targeted treatment option for VLS. Topical Janus Kinase Inhibitors, if they prove to effectively reduce inflammation, could be a new, non-steroidal
treatment option for VLS.

New Study for Another Non-Steroidal Treatment Option
The Centres for Vulvovaginal Disorders are recruiting for another potential non-steroidal treatment option.
Who? Only 5 people with active and symptomatic VLS who are not currently treating their VLS (or agree to stop reading 4 weeks before and during the study)
What? New non-steroidal novel treatment that can lower inflammatory chemicals within the skin and provide a barrier
When? Recruitment is open now and will close when participants are full. 10-week study (3 visits total) and biopsies required at visits 1 and 3
Where? NYC only – you are expected to be at all appointments
Why? Help find new treatment options for VLS

Next steps: Visit clinicaltrials.gov for more information. After reviewing, if you are still interested in participating, please email research1.cvvd@gmail.com

Ideal Time to Start Treatment
New research by Borghi et al. (2024) shows early treatment for VLS offers therapeutic benefits. Initiating corticosteroid therapy within 13 months of onset improves symptom remission. Lower
initial scarring predicts better outcomes in sclerosis and scarring (e.g., fusing). Early intervention, especially within 6 months, significantly enhances improvement. Prompt treatment within 12 months alleviates symptoms, signs, and painful intercourse.

Of course, starting treatment means getting diagnosed, and we know there is a big delay from the onset of symptoms to diagnosis (5-15 years) (Krapf et al., 2020). More awareness on both the patient and provider sides may help lower this time delay.

Pregnancy
To date, there have been few studies investigating the effects of pregnancy on vulvar lichen sclerosus. Further, the few studies we did have were relatively small (the most extensive study
looked at 33 pregnancies). Motivated by this, Shaffer et al. (2023) conducted a retrospective, cross-sectional online study to examine different factors that may influence VLS in pregnancy.
The study included 134 people with VLS with a combination of 206 pregnancies. Key findings include: symptoms and architectural changes decreased during pregnancy and gradually increased postpartum, 50% of participants reported anxiety relating to delivery, VLS did not impact the mode of delivery, and more education for patients is required to help manage symptoms during and postpartum as well as ease anxiety.

Want More Information? Download my Free VLS eBook
I consulted over 40+ peer-reviewed VLS research papers, synthesized the findings, organized them into topics, and translated findings into plain language.

Includes the following: 

1) Basic VLS education—including the characteristics of VLS, risk factors, genetic and hereditary factors,
diagnosis, treatments, experimental therapies, vulvar cancer risk, and the importance of vulva checks

2) Guidance on choosing an appropriate treatment plan (including a discussion of risk vs. benefits)

3) Sexual health education

4) Quality of life education

5) Support resources

6) Glossary of VLS-related terms from dermatology, gynecology, and sexual medicine with plain language explanations to help improve health literacy in patients with and caregivers to patients with VLS

7) Includes strategically placed too-long-did-not-read (TLDR) sections that summarize more science-heavy parts for individuals who are overwhelmed by a lot of detail

8) Revised annually for scientific accuracy to reflect any updates to the field. 

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. 

Get the eBook here.

Please share this post and eBook widely so more folks can get the information and support they need.

Questions? Contact Jaclyn at jaclyn@lostlabia.com

Jaclyn is the founder of The Lost Labia Chronicles–an evidence-based knowledge-sharing hub for VLS information and support resources. She is actively involved in several ongoing VLS research studies as a patient representative or co-investigator. Jaclyn is a content creator, speaker, facilitator, and board member of Lichen Sclerosus Support Network. In 2023, she won a scholarship to enroll in the European Patients Academy on Therapeutic Innovation (EUPATI) Patient Expert Training Programme, to help hone her patient advocacy skills. Jaclyn did her Ph.D. in philosophy of neuroscience at Western University with a focus on the role of systematic reviews and meta-analyses for corroborating information about the mind-brain in cognitive neuroscience.