Article by Dr. Patricia Gutiérrez Ontalvilla, MD, PhD. Plastic surgeon, doctor of medicine, specialist in vulvar lichen sclerosus, and creator of the Liquenia Protocol®.
There is a question that almost always arises during consultations at the same moment, right after explaining that vulvar lichen sclerosus can increase the risk of vulvar cancer: “So, Doctor, if I get treated, does that risk decrease?” It is the right question. The relationship between lichen sclerosus treatment and vulvar cancer risk is one of the few aspects of this disease for which we have concrete data, and I believe every patient deserves to know them, along with their figures and limitations.
Vulvar lichen sclerosus is not cancer, but chronic inflammation maintained for years can favor the appearance of vulvar squamous cell carcinoma. Available evidence indicates that patients who correctly follow the prescribed topical treatment and attend regular check-ups have a significantly lower incidence of carcinoma and precancerous lesions than those who follow it partially. It is not an individual guarantee, but it is the factor that is within our control.
Why can vulvar lichen sclerosus lead to squamous cell carcinoma?
Vulvar squamous cell carcinoma associated with lichen sclerosus is not dependent on the human papillomavirus. It follows a different pathway, called HPV-independent, in which the main driver is sustained chronic inflammation on tissue that repairs itself repeatedly.
This repeated process of damage and repair accumulates alterations in the cells of the vulvar skin. Over time, an intermediate lesion, differentiated vulvar intraepithelial neoplasia (dVIN), may appear. This is not yet cancer but is a precancerous lesion that can progress if not detected.
That is why the time of evolution matters so much. Lichen diagnosed early and controlled from the beginning starts from a different situation than lichen that has been inflamed for fifteen years without anyone noticing. I elaborate on this in the section on phases and evolution of vulvar lichen sclerosus.
What risk figure is truly defensible?
Here it is important to be precise, because very different percentages circulate, and not all have the same backing. The largest population study published to date reviewed reports from 3,038 women with lichen sclerosus from the Dutch Pathology Registry between 1991 and 2011, and found a cumulative incidence of vulvar squamous cell carcinoma of 6.7%.
Cumulative incidence of vulvar squamous cell carcinoma in 3,038 women with lichen sclerosus (Bleeker et al., 2016)
10-year incidence in women without associated intraepithelial neoplasia, compared to 18.8% in women with it (Bleeker et al., 2016)
10-year incidence in those diagnosed before age 50, compared to 5.9% from age 70 (Bleeker et al., 2016)
That 6.7% is an average for a specific population, and it hides enormous differences. A systematic review that analyzed 31 studies found that the described absolute risk ranges from 0% to almost 22% depending on the studied population and the methodology used. Translated to what matters in consultation: your risk is not a headline percentage; it depends on your age at diagnosis, the time the disease has been uncontrolled, and whether or not there is an associated intraepithelial lesion.
Most women with vulvar lichen sclerosus will not develop vulvar cancer. This data is not here to scare, but to explain why follow-up is not optional. You can consult the complete overview on the page about the risk of vulvar cancer in lichen sclerosus.
Does lichen sclerosus treatment reduce cancer risk?
This is the best-supported part. A prospective study followed 507 women with biopsy-confirmed vulvar lichen sclerosus for an average of almost five years. They were treated with topical corticosteroids of adjusted potency until a specific goal was achieved: the skin regaining normal color and texture, not just the disappearance of itching.
Of the 507 patients, 357 (70.4%) followed the instructions, and 150 (29.6%) did so partially. During follow-up, none of the 357 adherent patients developed squamous cell carcinoma or vulvar intraepithelial neoplasia, compared to 7 cases (4.7%) among those who did not follow the regimen. Differences in adhesions and scarring were equally marked: 3.4% versus 40%.
What I explain in consultation is this: you don’t choose the risk percentage, but you do choose adherence to treatment. And it is the only variable in this entire equation that we can act upon every day.
Dr. Patricia Gutiérrez Ontalvilla
These numbers should be read with honesty. It is a single-center cohort study, not a randomized trial, and it describes an observed association, not a proven causal relationship or an individual promise. But it is the best available evidence, consistently points in the same direction, and supports a clear recommendation: correctly followed topical treatment and regular follow-up are, today, the two measures with real backing against progression.
Why treatment continues when symptoms disappear
The relief of itching and stinging is good news, but it does not mean that the inflammation is extinguished. The goal of maintenance treatment is not for you to stop feeling discomfort, but for the vulvar skin to regain and maintain a normal color and texture. That is the criterion used in the previous study, and it is also the criterion I use in my practice.
This is why an asymptomatic patient may still need treatment. I have explained this in detail in the article on whether lichen sclerosus continues to damage cells when there are no symptoms. Any change in regimen, whether reducing, spacing, or suspending, must be decided by the professional who is monitoring you, never on your own initiative.
What a truly effective follow-up includes
- Regular check-up with a professional experienced in vulvar pathology. At least annually, more frequently if the disease is poorly controlled or if there is associated intraepithelial neoplasia.
- Targeted examination, not just an interview. Follow-up for lichen sclerosus requires looking at and palpating the vulva; simply asking about symptoms is not enough.
- Monthly self-examination with a mirror and good light, to familiarize yourself with your own anatomy and recognize any new changes.
- Biopsy for any doubt. It is the test that confirms or rules out a precancerous or malignant lesion, and it should not be postponed in the presence of a suspicious lesion.
- Review of actual adherence, without judgment. If you have stopped corticosteroids due to fear of side effects, say so. It is more common than you think and has a solution.
Ultrapotent topical corticosteroids remain the recognized cornerstone of vulvar lichen sclerosus treatment. The regenerative medicine approaches we develop, based on regenerative cells and autologous nanofat, are considered for established tissue damage and quality of life. They do not replace corticosteroids, and there is no data to attribute oncological risk reduction to them.
Signs that should not wait for the next check-up
Consult without delay if a thickened, hardened, or raised area appears; an ulcer or fissure that does not close within several weeks; a persistent reddish lesion that does not respond to usual treatment; a painful lump; bleeding not explained by a known fissure; or a new area of pigmentation. None of these findings alone means cancer, but all warrant an in-person evaluation.
References
- Bleeker MCG, Visser PJ, Overbeek LIH, van Beurden M, Berkhof J. Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiol Biomarkers Prev. 2016;25(8):1224-1230. doi:10.1158/1055-9965.EPI-16-0019
- Lee A, Bradford J, Fischer G. Long-term Management of Adult Vulvar Lichen Sclerosus: A Prospective Cohort Study of 507 Women. JAMA Dermatol. 2015;151(10):1061-1067. doi:10.1001/jamadermatol.2015.0643
- Leis M, Singh A, Li C, Ahluwalia R, Fleming P, Lynde CW. Risk of Vulvar Squamous Cell Carcinoma in Lichen Sclerosus and Lichen Planus: A Systematic Review. J Obstet Gynaecol Can. 2022;44(2):182-192. doi:10.1016/j.jogc.2021.09.023
Frequently asked questions
Does lichen sclerosus treatment reduce the risk of vulvar cancer?
Available evidence suggests yes, although it does not eliminate it. In a prospective study of 507 women (Lee, Bradford, and Fischer, JAMA Dermatology, 2015), none of the 357 patients who followed the prescribed topical treatment developed squamous cell carcinoma or intraepithelial neoplasia, compared to 4.7% of those who followed it partially. This is an observed association, not an individual guarantee.
Can I stop corticosteroids when symptoms disappear?
Not on your own. The absence of itching or stinging does not mean that the inflammation is extinguished. The goal of maintenance treatment is for the skin to regain and maintain normal color and texture, not just for you to stop feeling discomfort. Any change in regimen must be decided by the professional who is monitoring you.
How often should long-standing lichen sclerosus be checked?
It depends on your clinical situation. Generally, at least an annual check-up with a professional experienced in vulvar pathology is recommended, and more frequently if the disease is poorly controlled, if there have been suspicious lesions, or if there is associated intraepithelial neoplasia. Between check-ups, monthly self-examination helps detect changes early.
What signs should prompt me to consult without delay?
A thickened, hardened, or raised area; an ulcer or fissure that does not close within several weeks; a persistent reddish lesion that does not respond to treatment; a painful lump; bleeding not explained by a known fissure; or new pigmentation. Any of these findings warrants an in-person evaluation and, if appropriate, a biopsy.
Do regenerative treatments reduce the risk of vulvar cancer?
There is no data to prove it. Evidence of risk reduction comes from well-followed topical treatment and regular clinical follow-up. Regenerative approaches are considered for established tissue damage and quality of life, not as a substitute for corticosteroids or as a measure of cancer prevention.
Has your lichen sclerosus gone years without structured follow-up?
If you don’t remember when your last targeted vulvar examination was, or if you stopped treatment some time ago, the first step is an assessment with a professional experienced in vulvar pathology.
Dr. Patricia Gutiérrez Ontalvilla is a doctor of medicine, surgeon, and scientific researcher specializing in lichen sclerosus and regenerative cells. President of the Nixarian Foundation and creator of the Liquenia Protocol®. View professional profile and publications.
Content for informational and educational purposes. Vulvar lichen sclerosus is a chronic disease that can be controlled with appropriate treatment and follow-up. This article does not replace diagnosis or individualized medical advice. For persistent symptoms, pain, fissures, bleeding, or visible changes in the vulva, consult with gynecology, dermatology, or a vulvar pathology unit.
