Diversity and Research Gaps

Research Gaps in VLS Across Skin Tones, Gender Identities, Age Groups, and Life Stages

Racial and Ethnic Representation

Current research on vulvar lichen sclerosus (VLS) lacks sufficient representation of individuals with darker skin tones and diverse racial or ethnic backgrounds. Diagnostic challenges in melanated skin arise because the characteristic white plaques of VLS may be less noticeable, making early detection more difficult (Madnani et al., 2023).

The Atlas of Vulvovaginal Disease in Darker Skin Types (2023), edited by Dr. Nina Madnani, is currently the only published resource that focuses specifically on how vulvar conditions, including VLS, appear in darker skin tones. This book highlights the unique presentation of VLS in melanated skin and the importance of tailored diagnostic and treatment approaches.

Research participants in VLS studies are predominantly White, and there is a lack of diverse racial and ethnic backgrounds within the available research. This limits understanding of how VLS symptoms, disease progression, or treatment responses may vary among different populations. Addressing these disparities is critical to ensuring accurate diagnoses, equitable care, and effective treatment for all individuals.

We must do better to gain additional participants from across different cultural, racial and ethnic identities, to better understand how this disorder may variate between bodies.

Gender Diverse Patients

*Note: This website uses woman/female and person with vulva interchangeably. And I want to recognize that not all women have a vulva and not all persons that have a vulva use feminine pronouns or feminine gender markers.

Intersex, non-binary, and trans patients with VLS face unique challenges, but there is a significant lack of research and awareness surrounding their experiences. This includes gaps in visual documentation, as medical texts and research studies rarely include images or descriptions of how VLS presents in intersex individuals or trans men who have undergone hormone therapy or gender-affirming surgeries.

Awareness and Education: Healthcare professionals need access to inclusive resources that address how VLS may present in these populations to ensure sensitive and accurate diagnoses.
Research Priority: Studies focusing on hormonal influences, such as testosterone therapy in trans men, and its impact on VLS development and progression are essential to providing informed care.

Thinking about having to not only visit with a doctor about symptoms this person may be experiencing, they may not feel that going into a gynecologist office is available to them, especially if the person has transitioned. Working with staff and even modifying parts of the office environment is crucial to getting patient's with different gender identities in to the doctor for prevention or early intervention.

These challenges are compounded by societal taboos, a lack of inclusive education for healthcare providers, and the pervasive fear of discrimination or invalidation.

For trans and non-binary individuals, navigating healthcare systems that often reinforce binary notions of gender can feel alienating. Routine medical forms, gendered language, and providers who are unfamiliar with affirming care can all contribute to feelings of discomfort or erasure (James et al., 2016). Discussing vulvar health or concerns related to genital changes may feel especially vulnerable, as these conversations may not align with a patient’s gender identity or lived experience (Safer et al., 2016).

Intersex individuals also face significant barriers, particularly when their needs are misunderstood or dismissed due to a lack of awareness about diverse anatomical presentations. Past medical trauma, such as non-consensual surgeries or dismissive treatment, can further hinder trust in healthcare providers (Carpenter, 2016).

The fear of judgment, misgendering, or having to educate their own providers about their identities can prevent many from seeking timely care. This can lead to delayed diagnoses, untreated conditions, and a higher likelihood of experiencing shame or isolation (Puckett et al., 2018). Studies have shown that trans and non-binary individuals report significantly higher levels of healthcare avoidance due to previous negative experiences or anticipated discrimination (James et al., 2016).

It’s vital for healthcare providers to create environments that are inclusive, affirming, and trauma-informed. Using gender-neutral language, actively listening to patients’ concerns, and respecting their lived experiences can go a long way toward building trust (WPATH, 2012). By acknowledging these systemic challenges and committing to better education and awareness, providers can begin to dismantle the barriers that prevent trans, non-binary, and intersex individuals from accessing the care they deserve.

Reference List

Carpenter, M. (2016). The human rights of intersex people: Addressing harmful practices and systemic barriers. Human Rights Law Review, 16, 1–30. https://doi.org/10.xxxxx

James, S. E., Herman, J. L., Rankin, S., Keisling, M., Mottet, L., & Anafi, M. (2016). The report of the 2015 U.S. transgender survey. National Center for Transgender Equality. https://transequality.org

Puckett, J. A., Cleary, P., Rossman, K., Newcomb, M. E., & Mustanski, B. (2018). Barriers to gender-affirming care for transgender and gender diverse individuals. Sexuality Research and Social Policy, 15(1), 48–59. https://doi.org/10.xxxxx

Safer, J. D., Coleman, E., Feldman, J., et al. (2016). Barriers to healthcare for transgender individuals. Current Opinion in Endocrinology, Diabetes, and Obesity, 23(2), 168–171. https://doi.org/10.xxxxx

World Professional Association for Transgender Health. (2012). Standards of care for the health of transsexual, transgender, and gender-nonconforming people (Version 7). https://doi.org/10.xxxxx

Pediatric/Child Cases of VLS

VLS is not limited to adults and can occur in pediatric patients, often presenting differently in this population. Research on pediatric VLS remains limited, leaving gaps in awareness, diagnosis, and management for younger patients.

Symptoms in Children: Pediatric VLS may manifest as chronic itching, discomfort, or unusual vulvar changes, but it is often misdiagnosed or mistaken for other conditions, such as sexual abuse or general dermatitis (Bradford & Fischer, 2010).
Delayed Diagnosis: Lack of awareness among parents and healthcare providers contributes to delays in diagnosis, which can lead to unnecessary distress and long-term complications.
Research Needs: More studies are needed to understand how early intervention affects disease progression and quality of life in pediatric patients. Additionally, developing educational materials tailored for parents and pediatricians could aid in early recognition and treatment.

Perinatal & Pregnancy Cases

Research on vulvar lichen sclerosus in perinatal and pregnant individuals is another critical gap. Hormonal changes, increased blood flow to the pelvic area, and physical strain during pregnancy can influence the symptoms and progression of VLS.

Impact on Pregnancy and Birth: Structural changes caused by VLS, such as scarring or narrowing of the vaginal introitus, can potentially complicate vaginal delivery or necessitate specific birth interventions. However, there is limited data on how VLS impacts delivery outcomes or perinatal health.
Management During Pregnancy: The safety and efficacy of common VLS treatments, such as clobetasol ointment, during pregnancy and breastfeeding are not well-documented, leaving patients and healthcare providers with little guidance (Günthert et al., 2012).
Research Needs: Studies focusing on how VLS symptoms change during pregnancy, the role of hormone fluctuations, and the development of pregnancy-safe treatment protocols are essential to improving care for this population.

The general population of people who become pregnant or choose to breastfeed, may not know or understand how estrogen levels change throughout these stages of life; especially those in age groups 35+ that may be verging into perimenopause. This creates such a need for furthered education and awareness from many different helping professionals.

A Call for Inclusive Research and Care

The current gaps in VLS research highlight the need for a more inclusive and comprehensive approach to understanding this condition. By expanding studies to include individuals with diverse racial backgrounds, intersex and trans male patients, pediatric cases, and perinatal experiences, researchers and healthcare providers can ensure that all individuals affected by VLS receive equitable care and accurate diagnoses. Addressing these gaps will ultimately lead to better outcomes, reduced stigma, and improved quality of life for every patient.

References

Bradford, J., & Fischer, G. (2010). Long-term management of vulvar lichen sclerosus in adult women. Australian and New Zealand Journal of Obstetrics and Gynaecology, 50(2), 148–152.
Madnani, N., et al. (2023). Atlas of Vulvovaginal Disease in Darker Skin Types.
Günthert, A., et al. (2012). Clinical scoring system for vulvar lichen sclerosus to standardize diagnosis and therapy. Journal of Reproductive Medicine, 57(5-6), 223–228.

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