Lichen sclerosus - an underdiagnosed skin disease
Lichen sclerosus (LS) is a non-contagious skin disorder that mostly affects the genital and anal areas but can appear elsewhere on the body. Although we don't know the exact cause, we believe that an overactive immune system (autoimmune disease), hormone problems and genetics may play a role. . It is common for those who have LS to have other autoimmune diseases.
LS of the genital skin needs to be treated. Even if it isn't painful or itchy, the patches can scar and fusion (usually irreversible) can take place. This can cause problems with urination or sex. If you don’t maintain your treatment, there is also a small chance that vulvar cancer may develop.
Diagnosis: BIOPSY is the best way to diagnose LS. Biopsy results may be skewed if a topical steroid has been used within two weeks, so it’s best to stop application two to three weeks prior. Doctors are the specialized in vulvar disease like me are particularly trained and skilled at treating such diseases.
Cancer: Patients with LS may be a little more likely to develop skin cancer in the affected areas. However, it only occurs in about 3-4% of patients with LS and early treatment may reduce this risk even further. Any new lumps or non-healing sores or a major change in your symptoms should be reported to your doctor.
Topicals: Treatment usually begins with an ultra-potent topical steroid, i.e. Clobetasol. When applying the steroid, use the least amount that will provide a thin covering and gently massage it into moist skin. You may want to soak first by applying a warm moist towel for at least 15minutes. That way, the steroid gets to the basement membrane of the skin, otherwise it might just sit on the top and not be as effective.
I recommend using the cream once daily for 2 weeks or until the symptoms abate, then tapering down the frequency to twice a week for a maintenance dose. It is advised to do this slowly to avoid a rebound (a severe recurrence of symptoms).
If the steroid is causing irritation or you are not seeing any improvement after a few weeks, you may want to try a different steroid or different type of base. Although most women prefer the ointment, some find the cream, lotion or foam work better for them.
Another good option is to have your steroid compounded in a different base. Most compounding pharmacies will let you try a few of their bases first to determine which base is most comfortable for you. Your doctor will need to write a prescription to have it compounded.
If you apply moisturizers shortly before or after applying a steroid, these can dilute the steroid and potentially make it less effective. Try to apply your moisturizers at a different time of day, or at least 30 minutes before or after the steroid.
Other options: If steroids are not working, the second line of treatment are topical calcineurin inhibitors or immunomodulators, i.e. Protopic (tacrolimus) and Elidel (pimecrolimus). The draw-back may be that these are often quite irritating in the beginning. Also, some doctors will try testosterone, which years ago was the standard treatment for vulvar LS.
Hormones: I occasionally prescribe an estrogen cream for women with atrophy or damaged tissue. Estrogen is used to plump up and nourish the vulvar tissue, making it more elastic, sensitive, full of innervation and blood supply. It is often prescribed to be applied in the traditional method (inserted into the vagina), however, in the case of vulvar LS it is most helpful to be applied topically, directly to the vulvar tissue. You will probably find that a small amount will suffice - a lot less than what is suggested on the label. Because of the ingredients in the base of many estrogen/estradiol creams, some women find them to be irritating. We can chance the base by using a compounding pharmacy.
Experimental treatments: PRP with stem cells, Mona Lisa Touch Laser
Natural remedies and self-help
A few of these topicals are organic virgin coconut oil, pure emu oil, Lisepten, Emuaid, TerraSilk, CBD oil, Aquafor. You may also find relief from itching by taking an OTC antihistamine at bedtime, i.e. Benadryl or using Benadryl gel/cream.
Some women have said applying a mixture of organic apple cider vinegar and water to the vulva helps with itching and/or pain. Some mix baking soda, Epsom salts, Dead Sea salt, corn starch, or borax in water in the bathtub or a sitz bath.
Cleansing - Sanitary Items: Using water on the vulva is usually recommended but if that doesn’t work for you you can try an unscented, dye-free, perfume-free, soap-free cleanser. Some brands are: DermaVeen Soap-Free Wash, Aquanil, Dermol.
Dress: It is advisable to wear loose fitting clothing and white cotton or silk underpants.
Diet: Many people find that elimination of sugar, gluten, dairy, all processed foods, GMOs, and MSG from their diet can be extremely helpful, as these foods cause systemic inflammation. Others find being on a low-oxalate diet beneficial.
Stress: Control stress as best you can, because it exacerbates autoimmune diseases. Perhaps try meditation. Stress raises cortisol, which slows down production of thyroid hormones and high cortisol lowers estrogen and progesterone.
Thyroid: About 20% of LS patients have other autoimmune conditions, i.e. hypothyroidism. We can test you for Hashimoto’s and discuss dietary changes.