Article by Dr. Patricia Gutiérrez Ontalvilla, MD, PhD. Plastic surgeon, specialist in vulvar lichen sclerosus, and creator of the Liquenia Protocol®.
There are phrases that sound reassuring and achieve precisely the opposite. “It’s normal at your age.” “If nothing is visible, there’s nothing wrong.” “Learn to live with it.” I hear them almost every week, always within the same story: that of a diagnostic delay in lichen sclerosus that has extended for years. If any of these have been said to you, keep reading.
Vulvar lichen sclerosus (VLS) is a chronic inflammatory disease of the vulvar skin that alters collagen and can modify anatomy. Diagnostic delay in lichen sclerosus is the time that passes between the first symptoms and the correct diagnosis. It is usually measured in years, and that time is not neutral: while no one names the disease, the tissue continues to change.
Why Does Diagnostic Delay in Lichen Sclerosus Last So Many Years?
Lichen Sclerosus is underdiagnosed and undertreated, and the time to correct diagnosis is often measured in years: a systematic review published in 2025 indicates that in adult women, diagnostic delay can reach five years. In my practice, many patients arrive with even longer histories.
The reasons are repeated. The initial symptom, itching, is nonspecific and is confused with recurrent candidiasis, menopausal dryness, or supposedly inadequate hygiene. Detailed vulvar examination requires time and training, and is not always part of a quick check-up. Added to this is embarrassment: many women take months to put words to what is happening to them. And when they finally do, they receive a response that closes the conversation instead of opening it.
A useful fact for your next appointment: vulvar itching that persists for more than four to six weeks, or that does not improve with antifungals, warrants a specific examination. You can expand on this in our article about vulvar lichen sclerosus in early stages.
Five Phrases That Prolong the Wait (and What They Really Mean)
1. “Vulvar itching is normal at your age”
It is not. The decline in estrogen can produce dryness and discomfort, but does not explain persistent itching, especially if it is nocturnal and wakes you up. Attributing it to age converts a symptom that requires evaluation into a toll that must be endured. This is probably the mechanism that most contributes to diagnostic delay in lichen sclerosus.
2. “If nothing unusual is visible, there’s nothing wrong”
VLS can be active before changes are evident to the naked eye. An examination without striking findings does not rule out the disease, just as the absence of white plaques does not rule it out. When clinical suspicion persists, vulvar biopsy is the tool that establishes the diagnosis. It is also worth remembering that there can be disease activity with few symptoms.
3. “Since it doesn’t hurt much, we can wait”
Lichen sclerosus does not give warning before progressing. While waiting, the tissue can become thinner, more fragile, and less elastic, and fissures appear with friction. The early phase is the most valuable therapeutic window precisely because anatomical changes that have not yet occurred can be prevented. Waiting is not a clinical strategy: it is a decision with a cost.
“Each year without correct diagnosis costs tissue. And lost tissue does not recover simply because the name of the disease arrives later.”
Dr. Patricia Gutiérrez Ontalvilla
4. “Clobetasol is sufficient for life”
High-potency topical corticosteroids are the first-line treatment and have demonstrated their role in controlling inflammation. They are an essential tool, not a complete strategy. Controlling the flare does not equate to managing tissue evolution over ten or twenty years, which is why periodic clinical follow-up matters as much as the regimen. Neither fear nor abandonment helps: if you are concerned about using them, you should read about corticophobia in lichen sclerosus.
5. “Learn to live with it”
This phrase has reached too many patients. VLS is a chronic condition that can be managed, and reference clinical guidelines describe follow-up that must be maintained indefinitely, not a discharge with resignation. Furthermore, it is a disease that continues to be researched. Our group published a prospective open study with 18 patients in Aesthetic Surgery Journal (2025) that evaluated the use of stromal vascular fraction and autologous nanofat, with regenerative cells obtained from the patient’s own fatty tissue. This is a study without a control group and with a small sample, and in it, low-dose topical corticosteroids were maintained throughout the follow-up: it is proposed as a complementary approach to conventional treatment, not as a substitute. It is a line of research in development, not a promise of individual results, and its indication always depends on a medical evaluation.
What to Request If You Recognize Yourself in Two or More of These Phrases
You do not need to argue with anyone. You need to be specific. These are the requests that most help shorten diagnostic delay in lichen sclerosus:
- A specific vulvar examination, not a general check-up, describing how long you have had symptoms.
- An evaluation by gynecology, dermatology, or a vulvar pathology unit, which are those who see these conditions frequently.
- That the indication for biopsy be assessed if suspicion persists, even if the vulva appears normal.
- A written follow-up plan, with periodic reviews. Long-term monitoring also seeks to detect skin changes early, because poorly controlled VLS is associated with an increased risk of vulvar squamous cell carcinoma according to clinical guidelines.
- Distinguish the levels of approach: daily care (gentle hygiene and specific cosmetics, such as those developed by Dermnix for dry or fragile vulvar skin, always as a complement and never as treatment), medical treatment, reconstructive surgery for anatomical sequelae, and clinical research.
If you wish to review my training, my doctoral thesis on vulvar lichen sclerosus, and my publications, they are available at dragutierrez.com.
Frequently Asked Questions About Diagnostic Delay in Lichen Sclerosus
How long does it take on average to diagnose vulvar lichen sclerosus?
There is no single established average figure, but the literature describes delays that in adult women can reach five years from the first symptoms. Contributing factors include the nonspecific nature of vulvar itching, confusion with infections or menopause, and embarrassment about seeking care. This is a population range: every case is different, and an early consultation can shorten it significantly.
If my examination was normal, can I still have lichen sclerosus?
Yes. The disease can be active before clear visible signs appear, such as white plaques or anatomical changes. An examination without findings does not rule out VLS when symptoms persist. In those cases, evaluation by professionals experienced in vulvar pathology is advisable, who will decide whether a biopsy is indicated.
Is biopsy essential to diagnose VLS?
Not always. In clinically typical cases, diagnosis can be established by examination. Biopsy is indicated when there are doubts, when response to treatment is not as expected, or when lesions appear that require ruling out other causes. It is your specialist who assesses the indication at each moment, not an automatic protocol.
Are topical corticosteroids sufficient for life?
They are the first-line treatment and are effective in controlling inflammation and symptoms. Abandoning them out of fear usually worsens disease control. Even so, controlling the flare does not replace long-term clinical follow-up or management of tissue sequelae. The regimen should be reviewed periodically with your physician.
Can a vulvar cosmetic treat lichen sclerosus?
No. A vulvar cosmetic supports daily care of dry or fragile skin and can provide comfort, but does not treat the disease or replace prescribed medical treatment. If you have persistent symptoms, fissures, pain, bleeding, or visible changes, what you need is an evaluation by gynecology or dermatology.
Your Body Deserves Answers, Not Stock Phrases
If you have had vulvar symptoms for months or years without a clear explanation, request a specialized evaluation. The sooner what is happening is named, the more options there are to protect the tissue.
Informative and educational content, prepared for educational purposes. Does not replace individualized diagnosis or medical advice. For persistent symptoms, consult with your gynecologist, dermatologist, or vulvar pathology unit. You can find additional information about research and education at Fundación Nixarian.
References
- Gutierrez-Ontalvilla P, Gomez Rojas A, Iborra Colomino M, Canikyan S, Kul Y, Duyan C, Codoñer P. Clinical and Histopathological Investigation of Stromal Vascular Fraction and Nanofat in Vulvar Lichen Sclerosus. Aesthetic Surgery Journal. 2025;45(11):1166-1174. doi:10.1093/asj/sjaf148
- Pérez-López FR, Vieira-Baptista P. Lichen sclerosus in women: a review. Climacteric. 2017;20(4):339-347. doi:10.1080/13697137.2017.1343295
- Lewis FM, Tatnall FM, Velangi SS, Bunker CB, Kumar A, Brackenbury F, Mohd Mustapa MF, Exton LS. British Association of Dermatologists guidelines for the management of lichen sclerosus, 2018. British Journal of Dermatology. 2018;178(4):839-853. doi:10.1111/bjd.16241
- Conte S, Mohamed SD, Cohen Y, et al. Clinical presentations and complications of lichen sclerosus: A systematic review. JDDG: Journal der Deutschen Dermatologischen Gesellschaft. 2025;23:143-149. doi:10.1111/ddg.15606
- Kirtschig G. Lichen Sclerosus: Presentation, Diagnosis and Management. Deutsches Ärzteblatt International. 2016;113(19):337-343. doi:10.3238/arztebl.2016.0337
