What is known about this subject in regard to women and their families?
Vulvar allergic contact dermatitis (vACD) frequently complicates underlying vulvar dermatoses, affecting over 50% of women with preexisting vulvar lichen sclerosus (LS).
Fragrances, preservatives, and topical medicaments are the most implicated sources of allergens in vACD.
Women with LS seeking support via social media encounter a variety of topical preparations that may contain allergens.
What is new from this article as messages for women and their families?
The overwhelming majority of topical preparations encountered by women with LS on social media support groups contained vulvar allergens.
Our findings highlight the high prevalence of allergenic botanical extracts/spices within topical preparations used by LS patients on social media.
As social media represents an increasingly important source of health information, knowledge on prevalent allergens encountered by patients with LS on social media may inform patch-testing selection to identify culprits of vACD and patient counseling by physicians on therapies.
Vulvar allergic contact dermatitis (vACD) complicates preexisting vulvar lichen sclerosus (LS) in over 50% of cases, leading to misdiagnosis, treatment delays, and severe declines in quality of life.1,2 Allergenic fragrances, preservatives, and topical medicaments are major causes of vACD via local or systemic immune activation.1,3 Over time, social media (SM) has become an increasingly popular source of health information.4 Women with LS seeking support via SM encounter a variety of topical preparations that may contain allergens. We evaluated the prevalence of vulvar allergens within topical preparations recommended by women with LS on SM using a cross-sectional analysis of Facebook groups.
Facebook was systematically searched using the keywords “lichen sclerosus/sclerosis,” “vulva,” “vagina,” and “genital.” Groups containing at least 1,000 members were included. Groups targeting multiple/other vulvar dermatoses were excluded. Up to 500 consecutive posts were analyzed per group (April–September 2022). Ingredient lists of topical preparations recommended by members were analyzed to identify allergens implicated in vACD (Table 1).
Table 1.
Allergens implicated in vulvar and anogenital allergic contact dermatitis
Allergen class | Allergen name |
---|---|
Fragrances | Balsam of Peru (M. pereirae) |
Fragrance mix I and II | |
Cinnamal/cinnamic aldehyde | |
Eugenol | |
Isoeugenol | |
Hydroxyisohexyl 3-cyclohexene carboldehyde | |
Hydroxy citronellal | |
Preservatives | Quaternium-15 |
Paraben mix | |
MCI/MI | |
2-Bromo-2-nitropropane-1,3-diol | |
Ethylenediamine dihydrochloride | |
Stearyl alcohol | |
Imidazolidinyl urea | |
2-Phenoxyethanol | |
Chloroacetamide | |
Diazolidinyl urea | |
MDBGN | |
Sodium metabisulfite | |
Thimerosal | |
Kathon | |
Formaldehyde | |
Bronopol | |
Antibiotics | Framycetin sulfate |
Streptomycin sulfate | |
Neomycin | |
Bacitracin | |
Polymyxin | |
Anesthetics | Caine mix |
Antiseptics | Chlorhexidine |
Povidone-iodine | |
Cetrimide | |
Mercuric chloride | |
Gentian violet | |
Benzethonium chloride | |
Phenylmercuric salts | |
Potassium dichromate | |
Botanical extracts/spices | Arnica montana |
Compositae mix | |
Jasmine | |
Oak moss | |
Jojoba oil | |
Eucalyptus oil | |
Peppermint oil | |
Emollients | Propylene glycol |
Lanolin alcohol | |
Glycerin | |
Miscellaneous | Nonoxynol |
Acrylates | |
Thymol | |
Toluene-sulfonamide formaldehyde resin | |
Mercaptobenzothiazole | |
Carba mix | |
Thiuram mix | |
p-Phenylenediamine | |
Thymol | |
Tectol | |
Latex | |
Hexylresorcinol | |
Oxyquinoline sulfate | |
Quinine hydrochloride | |
Phenylmercuric acetate, butyrate | |
Colophony (rosin) |
MBDGN, methyldibromoglutaronitrile; MCI/MI, methylchloroisothiazolinone/methylisothiazolinone.
A total of eight Facebook groups (median number of members: 4,759; range: 1,330–8,680) and 4,000 posts were analyzed. In total, 78.7% (118/150) topical preparations contained at least one known anogenital allergen (Table 2). Emollients, namely glycerin, lanolin, and propylene glycol, were the most prevalent allergens, present in 62.7% of topical preparations. Preservatives (52%), fragrances (20.7%), botanical extracts/spices (20.7%), and medicaments (14.6%) followed. Allergenic preservatives included stearyl alcohol, 2-phenoxyethanol, paraben mix, and methylchloroisothiazolinone/methylisothiazolinone. Fragrance mix I/II was the most common fragrance (71%). Jojoba was the most prevalent botanical extract/spice (58.1%), followed by Arnica montana, peppermint, eucalyptus, jasmine, and oak moss.
Table 2.
Frequency of vulvar allergens in topical preparations recommended to lichen sclerosus patients on Facebook groups
Allergen | Frequency (No. %) |
---|---|
Fragrances | 31 (20.7) |
Balsam of Peru | 1 (0.7) |
Fragrance mix I and II | 22 (14.7) |
Cinnamal | 2 (1.3) |
Eugenol | 1 (0.7) |
Hydroxy citronellal | 5 (3.3) |
Preservatives | 78 (52) |
Quaternium-15 | 1 (0.7) |
Paraben mix | 15 (10) |
MCI/MI | 12 (8) |
Ethylenediamine dihydrochloride | 1 (0.7) |
Stearyl alcohol | 20 (13.3) |
Imidazolidinyl urea | 8 (5.3) |
2-Phenoxyethanol | 18 (12) |
Diazolidinyl urea | 3 (2) |
Antibiotics | 11 (7.3) |
Neomycin | 2 (1.3) |
Bacitracin | 6 (4) |
Polymyxin | 3 (2) |
Anesthetics | 9 (6) |
Caine mix | 9 (6) |
Antiseptics | 2 (1.3) |
Chlorhexidine | 1 (0.7) |
Benzethonium chloride | 1 (0.7) |
Botanical extracts/spices | 31 (20.7) |
Arnica montana | 5 (3.3) |
Jasmine | 1 (0.7) |
Oak moss | 1 (0.7) |
Jojoba oil | 18 (12) |
Eucalyptus oil | 2 (1.3) |
Peppermint oil | 4 (2.6) |
Emollients | 94 (62.7) |
Propylene glycol | 21 (14) |
Lanolin alcohol | 20 (13.3) |
Glycerin | 53 (35.3) |
Miscellaneous | 12 (8) |
Nonoxynol | 1 (0.7) |
Acrylates | 9 (6) |
Thymol | 1 (0.7) |
Toluene-sulfonamide formaldehyde resin | 1 (0.7) |
MCI/MI, methylchloroisothiazolinone/methylisothiazolinone.
The overwhelming majority of topical preparations encountered by women with LS on SM contained known vulvar allergens, highlighting the importance of patient counseling by physicians before the application of topical therapies. We demonstrate the high prevalence of allergenic emollients and botanical extracts/spices within natural topical preparations. Older adults and those unfamiliar with SM platforms may have been excluded. The keywords for inclusion criteria may not have captured all LS Facebook groups. The narrow timeframe studied may have limited the types of topical preparations identified, which may not reflect current trends. To prevent the exclusion of allergens known by multiple names, we analyzed ingredient lists using all known names of allergens.
Our findings highlight the high prevalence of allergenic botanical extracts/spices within topical preparations encountered by LS patients on SM. Over 60% of women with chronic vulvar disease use botanical products, and this percentage is increasing, which may be due to the belief that natural preparations are safer than their synthetic counterparts.1,5 Tea tree oil and compositae mix are allergenic sensitizers. Additionally, fragrance mix is an indicator allergen for several spices.3 Women with LS on SM forums are often keen to trying alternative treatments:5 thus, botanical extracts/spices may represent important culprits of vACD due to increased topical exposures in the context of underlying vulvar barrier impairment.1,3 As SM represents an increasingly important source of health information for patients with LS, our findings may inform patient counseling by physicians on therapies and patch testing selection to identify culprits of vACD.
Conflicts of interest
None.
Funding
None.
Study approval
The authors confirm that any aspect of the work covered in this manuscript that involved human patients has been conducted with the ethical approval of all relevant bodies.
Author contributions
SA and YL contributed to research design, performance of research, and writing of the paper. YL contributed to data analysis.
Footnotes
Published online 18 July 2023
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