Patient discussions

​Ensure the patient is aware of the risk of neoplastic change (occurs in approximately 5% of women with genital lichen sclerosus [LS]), and that risk can be minimised by good disease control via continuance of maintenance therapy (if indicated) as recommended by the clinician.[4][5][34]​ Advise patients to contact their clinician if there is a major change in symptoms or if there is a change in appearance or texture of the affected skin (which may include scarring and associated structural changes).[34]​ Advise patients with only extragenital disease to self-monitor for signs and symptoms of anogenital disease and to contact their clinician for review if they occur. 

Demonstrate how much topical corticosteroid to use (e.g., a lentil or half pea-size amount may be appropriate in an adult woman with anogenital LS) and where to apply it - the use of photographs or having patients use a mirror in clinic can be helpful adjuncts. Allay any fears stemming from corticosteroid phobia, which is frequently encountered in patients with LS.[42][85]​​ Before initiation of topical corticosteroids, reassure the patient that:

  • Topical corticosteroids are safe and highly effective when an appropriate amount is used in the correct anatomical location

  • Adverse effects are minimal when used as directed

  • Using the correct amount will decrease symptoms as well as help to prevent future scarring; good control of the disease should decrease the chance of developing squamous cell carcinoma.

Advise patients to avoid irritant and fragranced products.[35]

  • Instruct patients with anogenital disease to clean affected areas with only water if they can tolerate this. If the patient’s preference is to use a soap, counsel them to use a gentle formulation without allergens or irritants, and to apply this with their hands rather than with a washcloth.

    • Soaps, if used, should be entirely rinsed with water.[35][56]

    • Advise women and girls that soap and other cleansers should not be used internally.

Advise the patient that emollient use (e.g., white petrolatum) is recommended for all affected areas as an adjunct treatment alongside standard therapies.[35][56]​ Advise that emollients and topical corticosteroids should not be applied simultaneously, because doing so may dilute the agents.[56]

  • Emollients may provide additional symptom relief, improve the skin barrier, and provide resistance to external irritants.[56]

  • Emollients may be used as soap substitutes when washing extragenital areas.[35]

  • Use of emollients may be continued following the acute phase to maintain improved condition of the skin.[35][56]

Provide patients with information regarding the condition, such as up-to-date patient information leaflets and links to trusted resources/websites.[34][35]​​​[56] It is important that the patient does not feel isolated; given the sensitive nature of this condition, they may not wish to discuss their diagnosis with family and friends. There are numerous support groups available for patients with lichen sclerosus and their families/carers, such as:

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