In more than ten years of treating women with vulvar lichen sclerosus, I have seen a pattern that repeats in almost every story. It is not the symptom. It is not the diagnostic delay. It is something prior: the amount of unreliable information about vulvar lichen sclerosus they have read on the internet before sitting in front of me.
The figure is staggering. The most recent European studies place the average diagnostic delay for this disease between 5 and 7 years (Pérez-López et al., Climacteric 2017). Seven years. During a good part of those years, the patient seeks answers wherever she can: forums, networks, blogs, unsupervised artificial intelligence. And what she finds, almost always, worsens her situation.
Women who had abandoned ultrapotent corticosteroids out of fear. Women who had spent thousands of euros on “natural remedies” without clinical backing. Women convinced that the disease was contagious. Women certain they had cancer because a forum had suggested it.
This article stems from that observation. The problem with vulvar lichen sclerosus is not only that it is underdiagnosed. The problem, furthermore, is that the information available to the patient in Spanish is overwhelmingly poor. Learning to distinguish a reliable source from one that is not can literally change the course of your disease.
Why misinformation about lichen sclerosus is especially dangerous
In other diseases, poor information is annoying. Here it can be serious. For three specific reasons.
First, it delays diagnosis. Vulvar lichen sclerosus is a chronic inflammatory disease that progresses without treatment. Every month of delay means more active inflammation, irreversible architectural changes, and a small but real increase in the risk of malignant transformation to vulvar squamous cell carcinoma (around 4-5% over a lifetime in untreated VLS).
Second, it feeds corticophobia. Guidelines from the world’s most authoritative societies—the British Association of Dermatologists (BAD, 2018), the European Academy of Dermatology and Venereology (EADV, S2k Guideline 2024), and the International Society for the Study of Vulvovaginal Disease (ISSVD)—agree: ultrapotent topical corticosteroids, such as clobetasol, are the first-line treatment. Properly prescribed, they are safe and effective. The fear of corticosteroids fueled by non-medical information causes many patients to abandon treatment or not start it.
Third, it gives a platform to treatments without evidence. Esoteric herbs and oils, miracle diets, poorly indicated isolated infiltrations. Each of these paths equates to lost months, wasted money, and, occasionally, added tissue damage.
How to recognize a reliable source on vulvar lichen sclerosus
I ask my patients for five criteria before accepting any text, video, or publication about the disease as valid.
Criterion 1 — Who signs the content?
A text on vulvar lichen sclerosus must be signed by an identifiable healthcare professional, with a verifiable specialty and registration number. If there is no signature, or the signature is an alias, discard the source. Identifiable authorship is a direct proxy for responsibility.
Criterion 2 — Is it supported by international clinical guidelines?
A reliable source explicitly cites reference guidelines: ISSVD for terminology and diagnosis, BAD Guidelines 2018 for clinical management, EADV S2k 2024 for the most recent European consensus, or the recommendations of the Royal College of Obstetricians and Gynaecologists (RCOG). If a text makes claims without citing any guideline, assume it is opinion, not evidence.
Criterion 3 — Does it distinguish “cure” from “control”?
This is a very revealing test. According to international clinical consensus, vulvar lichen sclerosus is currently a controllable chronic disease, not a curable one. Any source promising a “definitive cure”—with corticosteroids, regenerative treatments, surgery, or anything else—is, at best, being imprecise. At worst, it is deceiving you.
Criterion 4 — Does it contrast treatments with peer-reviewed literature?
Serious content mentions authors, years, and peer-reviewed journals (Aesthetic Surgery Journal, JAAD, Dermatology, BJOG, among others). If treatments appear without scientific reference, it is dissemination without grounding.
Criterion 5 — Does it personalize or generalize?
Every patient is different: age, stage, predominant symptoms, history, skin type. Distrust any source that offers “the protocol that works for everyone.” That phrase, by itself, is a red flag.
Which sources are NOT reliable (even if they seem useful)
Patient forums and closed social media groups have real emotional value. Knowing you are not alone matters. But they are not a clinical source. Information about treatments, doses, duration, or prognosis should never be sought there.
Also distrust commercial pages that talk about lichen sclerosus without an identifiable medical team; content generated by artificial intelligence without specialist supervision; “alternative medicine” books that promise natural cures for a disease that, today, has no cure; and any source that speaks to you in absolute terms (“always”, “never”, “for everyone”). Serious medicine moves in margins, not in universal certainties.
The book I wrote to bridge this gap
Poor information about lichen sclerosus in Spanish has a specific root: until now, there was no clear, rigorous, and humane medical guide written specifically for the patient. Scientific articles are in English, full of acronyms, and intended for specialists. Official clinical guidelines are not written to be read on the sofa after diagnosis.
For this reason, after more than a decade of treating women with this disease in my practice, I wrote “Lichen Sclerosus: What No One Explained to You. A clear and humane medical guide to understanding the disease and knowing the treatments that really work” (Nixarian Institute SL, 2025; ISBN 9798279278671).
It consists of 26 chapters organized into 6 thematic blocks, with two medical forewords, real patient testimonials, a glossary of terms, and an entire chapter—Chapter 14—with a checklist of questions to take to your next consultation. Every clinical statement is anchored in ISSVD, BAD, and EADV guidelines and in explicitly cited peer-reviewed literature. And, most importantly: it honestly explains what works, what doesn’t, and what is still a hypothesis versus what is already evidence.
I wrote it thinking of the woman who has just received the diagnosis, who is sitting in the car after leaving the consultation, who doesn’t quite understand what she has been told and who is going to open a search engine in two minutes. For her. A portion of the sales proceeds also contributes to research on lichen sclerosus through the Nixarian Foundation.
Frequently Asked Questions
Where can I find reliable information about vulvar lichen sclerosus?
The most reliable sources are international clinical guidelines (ISSVD, BAD 2018, EADV 2024, RCOG), peer-reviewed medical journals indexed in PubMed, and educational texts signed by identifiable specialists with their own scientific publications. For the Spanish-speaking patient, the book Lichen Sclerosus: What No One Explained to You translates these sources with rigor and accessible language.
Why should I not trust patient forums about lichen sclerosus?
Forums have emotional value and help you know you are not alone, but they are not clinical sources. Treatments, doses, and prognoses vary greatly for each patient and require individualized evaluation. Using information from forums as a basis for clinical decisions can delay a correct diagnosis or lead to therapies without evidence.
What are the most authoritative clinical guidelines on vulvar lichen sclerosus?
The three international references are the International Society for the Study of Vulvovaginal Disease (ISSVD), which sets diagnostic terminology; the British Association of Dermatologists Guidelines 2018, a reference in clinical management; and the European Academy of Dermatology and Venereology S2k Guideline 2024, the most recent European consensus. Any reliable content should cite at least one of them.
Is the book “Lichen Sclerosus: What No One Explained to You” based on scientific evidence?
Yes. Each chapter is supported by international clinical guidelines (ISSVD, BAD, EADV) and explicitly cited peer-reviewed literature. The book honestly distinguishes which treatments have solid evidence, which are promising but still under investigation, and which lack scientific backing. It is written for patients without prior medical training.
Where can I buy the book on vulvar lichen sclerosus by Dr. Patricia Gutiérrez Ontalvilla?
The book is available in the official store of the Nixarian ecosystem with shipping to Spain and the countries where the platform operates. You can get it directly at the product URL, indicated below on the purchase button.
Lichen Sclerosus: What No One Explained to You
If you have been looking for reliable information on vulvar lichen sclerosus for a long time and have only found confusion, this book is the starting point you need.
