What if my medicine stops working?
Play • 18 min

What would you do if your topical corticosteroid stopped working? I mean think about. Remember how it felt when you first noticed something was off with your vulva. The uncertainty that crossed your mind. Was this all in your head?

How it felt every time you went to the doctor and they gave you a new diagnosis but the medications they gave didn’t work. The frustration and fear that you would never truly know.

What about the day you were finally told you had Lichen Sclerosus? The feeling of devastation that you would never be rid of this but the feeling of relief that it had a name and you had a plan to manage it.

How freeing did it feel after you started using your medication? To not itch, to stop burning, feel kind of normal again? Now imagine your symptoms start coming back and your medicine is not working anymore.

The anxiety, the fear, the desperation that would wash over you because now you know. You know what Lichen Sclerosus is. You know what it can do to your body. What it can turn into if you don’t use your medication.

What would you be willing to do? Would you try a treatment that only had a 25% chance of working? What about 50% or 90%? Okay, what if it wasn’t FDA approved? Would it make a difference if your insurance didn’t cover it and you had to pay out of pocket? Would you pay thousands of dollars for this treatment? What if you didn’t know how long the results would last? Would that make a difference?

I don’t know. I might be desperate enough to try it. We’re going to look at what options we have if our corticosteroid treatments stop working. Forewarning, none of them are covered by insurance in the USA. I don’t know about other countries. 

Alternate Treatments Fractional Co2 Lasers

  • Go by various names, MonaLisa Touch or CO2RE Intima, depending on the manufacturer
  • Use lasers to remove layers of skin. When the skin regenerates it’s supposed to be supple, revitalized, and symptom-free
  • Can range anywhere from $1,300 - $3,000 and up depending on the doctor, size of the facility and location of the practice
  • Have past two recent clinical trials
    • "Laser therapy is a promising option for patients not responding to topical corticosteroid therapy or patients wishing to reduce long-term corticosteroid maintenance use."

Platelet-rich plasma/PRP

  • O-Shot
  • Use injections of your platelets, which have been harvested from your blood injected into your vulva to improve the blood flow and “encourage tissue regeneration”, thus curing your symptoms
  • can range between $500-$1500
  • Double-blind clinical test recently published
  • They concluded PRP was not a good treatment for vulvar Lichen Sclerosus and suggested there be more comparison studies.

Ultrasound therapy

  • Sends ultrasound waves through different areas of the vulva. The thinking is to use sound energy to rejuvenate the skin and cure the patient of their symptoms.
  • Could not find a price range
  • Chinese clinical study published in 2017
  • Although 90% had some improvement after one year only 25% maintained cured after five

Please see complete show notes for more details and links to studies. Don't forget to subscribe! Thanks! Kathy

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