Social stigma, sense of loss and shame associated with vulvar lichen sclerosus
Today’s report also covers research into the inherited pattern of skin aging, factors associated with facial melasma severity in Brazilian women, and more (1,353 words, 6.5 minutes)
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Good morning, and welcome to the Women in Dermatology e-newsletter from Chronicle Companies. We’re pleased to have you join us. This biweekly bulletin will update you on new findings regarding dermatologic issues that affect women and the dermatologists who treat them. We welcome your feedback and opinions, so let us know if you have any comments, observations, or suggestions. You can email them to us at health@chronicle.org
Chronic dermatological conditions of the vulva can have a significant impact on quality of life and identity, but a recent study in Health (Aug. 11, 2024) notes that those medical conditions have received almost no consideration in scientific literature. The study examined the experiences of women living with vulvar lichen sclerosus (VLS) and the impact of shame and stigma on their quality of life. The authors found that women with VLS often experience shame and isolation due to societal taboos and a lack of understanding about the condition.
The study included a patient advisory panel of three women with VLS who provided input on various aspects of the research, including the topic guide, recruitment, and interpretation of findings. The panel emphasized the importance of focusing on the silence surrounding the condition and its impact on everyday life and emotional well-being. Data collection took place in England and Wales in 2020 and 2021. The participants were recruited through online support communities and community center posters. Due to Covid-19, interviews were conducted via telephone or virtual video calls. The study included 20 participants, all of whom identified as cisgender women.
The authors found that women with VLS often described feeling dirty or unclean despite the condition not being contagious or caused by poor hygiene. Some even associated their condition with sexually transmitted diseases, leading to shame and self-blame. Visible indications of their condition, such as scratching or needing to adjust clothing, sometimes prevented women from participating in social activities. Some women isolated themselves during flares to avoid the stigma associated with the visible signs of their condition.
The interviews also revealed that women with VLS often find it difficult to disclose their condition due to the taboo nature of discussing genital health, fear of judgment, and potential negative reactions from others. The lack of general knowledge about VLS meant women had to provide intimate details when explaining their condition, which often led to shame. Most participants said they only disclosed their condition to partners and spouses due to fear of being blamed for their condition or having it attributed to poor hygiene or sexual behaviour.
The results also showed that women with VLS felt it was taboo to discuss or even think about their vulva, leading to delays in seeking medical help. Participants described overcoming profound embarrassment to speak about their condition, only to often feel dismissed by healthcare professionals. Most participants also stated to have been unaware of vulvar skin conditions, often believing their symptoms were normal aspects of womanhood, such as yeast infections, aging, or menopause.
The women in the study said they experienced a deep sense of loss due to the physical changes caused by VLS. They reported alterations in their vulvar anatomy, which they connected to their sense of womanhood and femininity. This loss of anatomy led to feelings of being degendered or defeminized. The women viewed this loss as a result of delayed access to proper care, which they attributed to the normalization and dismissal of women’s pain.
The Takeaway: Women with VLS often experience feelings of uncleanliness, shame, and isolation due to societal taboos and lack of understanding about the condition. Visible signs sometimes prevented women from participating in social activities, and many women isolate themselves during flare-ups to avoid stigma. Disclosing the condition is difficult for most women due to the taboo nature of discussing genital health and fear of judgment. Participants often delayed seeking medical help due to embarrassment, and when they did seek help, many felt dismissed by healthcare professionals.
From the literature on women in dermatology
Assessing the inclusion of women of colour in lichen sclerosus treatment studies
A study published in the International Journal of Women’s Dermatology examined racial demographic data in vulvar lichen sclerosus (VLS) treatment studies, focusing on the representation of women of colour. The researchers found that studies on vulvar lichen sclerosus rarely report racial demographic data, with Black and LatinX women being significantly underrepresented.
For this study, the authors conducted a primary literature search using four databases: Ovid Medline(R), Scopus, Cochrane, and Web of Science, covering all years up to Dec. 2022. The final review included 65 studies involving adult women with VLS who were treated with topical corticosteroids, and only six of those studies reported racial demographic data. White women constituted at least 93.9% of the sample population in five of these six studies. In three studies, participants were categorized as White, Asian, or other, without further detail. Black and LatinX women were represented in only two studies. In one, Black women comprised 1.8% of the participants, while LatinX women accounted for 5.7%. In the other study, Black women represented 3.8% of the sample, with no LatinX women included.
The characteristics and inheriting pattern of skin aging in Chinese women
A study in Clinical, Cosmetic and Investigational Dermatology assessed the skin aging characteristics of Chinese women and the similarity in aging skin characteristics between mother-daughter pairs. The researchers found that skin aging characteristics were notably similar between mother-daughter pairs. Furthermore, age 50 represents a pivotal point in skin aging, and skin aging accelerates significantly beyond this age, with increased wrinkles and skin laxity.
The authors analyzed 40 mother-daughter pairs, evaluating their perceived ages and systematically grading their skin aging traits. They used statistical methods to identify trends in aging characteristics and introduced a new similarity parameter to compare skin aging patterns between mothers and daughters. The results indicated a significant similarity in skin aging characteristics within mother-daughter pairs, suggesting a possible genetic influence on skin aging.
Factors associated with facial melasma severity in Brazilian women
A study published in Anais Brasileiros de Dermatologia (Brazilian Annals of Dermatology) examined the factors associated with facial melasma severity in Brazilian women. The researchers found that sun and heat exposure, hormonal influences, psychological stress, and poor sleep quality were linked to more severe melasma.
For this study, the authors used a cross-sectional internet-based survey that included 2,271 responses, with 1,878 valid melasma cases. The results showed that melasma was more severe in women between 30 and 45 years, with intermediate skin pigmentation, multiple pregnancies, impaired sleep quality and higher levels of anxiety and depression. The study also identified three main facial melasma patterns: upper face, centro-facial, and peripheral.
Influence of collagen peptide supplementation on visible signs of skin and nail health and aging
A study published in the Journal of Cosmetic Dermatology assessed the effects of a collagen peptide dietary supplement on skin aging in a sample of East Asian women. The researchers found that daily collagen peptide supplementation positively affects visible signs of skin and nail aging and overall beauty perception.
For this study, 85 female participants between 43 and 65 years were randomly assigned to receive either 5 g of a collagen peptide supplement or placebo for 84 days. Both groups used a specific face cream throughout the study to standardize daily skin care. The results showed that the collagen peptide group experienced significant improvements in dermis density and skin moisture after 84 days. Additionally, positive effects on skin elasticity, reduced wrinkle visibility, and improved nail colour were observed in the peptide group within 28 days of supplementation. In contrast, the placebo group experienced similar improvements only after 84 days.
VIDEO: Dermatology below the waistline with Dr. Stephanie Gallard
Liverpool-based dermatologist Dr. Stephanie Gallard shares her specialized knowledge of vulvar skin conditions.
Diffuse dermal angiomatosis of the breast
A case report in Cureus described a 56-year-old woman with recurring, extremely painful sores on her lower breasts, which had appeared six months earlier. The patient reported that the same ulceration occurred two years prior and was treated with antibiotics, which led to symptom resolution. Her medical history included hypertension, hyperlipidemia, coronary artery disease, and obesity, and she was a smoker at the time of presentation. On examination, she had purple, net-like patches and shallow open sores. A mammogram and tissue culture were negative for cancer and infection. After wound care, including cleaning and dressing changes, the patient was diagnosed with diffuse dermal angiomatosis of the breast. Lifestyle modifications, weight loss, smoking cessation, and treatment with pentoxifylline led to ulcer resolution and improvement in lesions.
Coming Up in Women in Derm
Sept. 25–28 → European Academy of Dermatology and Venereology (EADV) Congress (Amsterdam)
Oct. 4 → Indigenous Skin Spectrum Summit
Oct. 5 → 10th Annual Skin Spectrum Summit
Oct. 19 → Skin Basics for Primary Care
This month:
August is Gastroparesis Awareness Month
August is Spinal Muscular Atrophy Awareness Month
Aug. 31 is International Overdose Awareness Day
June is ALS Awareness Month
June is Brain Injury Awareness Month
June is Spina Bifida and Hydrocephalus Awareness Month
June is Migraine Awareness Month
Jun. 1 is Intergenerational Day Canada
Jun. 2 to 8 is Hidradenitis Suppurativa Awareness Week
June 5 is World Environment Day
Something to think about
“We often had just one lecturer, who was sometimes unavailable due to other engagements. Working without daily guidance during my internship motivated me to address the shortage of dermatologists in Rwanda. We need more dermatologists, not just in Rwanda but across Africa. If more professionals enter dermatology, we can shift our focus from merely treating conditions to also preventing them.”
— Dr. Uwajeni Amani, a Kigali City, Rwanda-based dermatologist, in an interview with the New Times.