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Podcast

What if my medicine stops working?

What if my medicine stops working?

What would you do if your topical medication 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. Thinking, “Is 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 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 finally had a plan to manage it.

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

Now Imagine

Instead of having a flareup every month or two, you get them every other week. Your itching gets worse. Your fissure won’t go away.

What if my medication stopped working?
Image by StockSnap from Pixabay

Imagine 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 stay medicated.

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? If 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. Goodness knows I don’t have the money but I would probably figure something out.

We’re going to look at what options we have if our medication stopped working today. Forewarning, insurance does not cover theses treatments in the US. I don’t know about other countries.

Alternate Treatments If Your Medication Stopped Working

Fractional Co2 Lasers

Fractional Co2 lasers go by various names, MonaLisa Touch or CO2RE Intima, depending on the manufacturer. They use light energy to remove layers of skin. Theoretically, the skin will be supple, revitalized, and symptom-free when it rejuvenates.

Treatments can range anywhere from $1,300 – $3,000 and up depending on the doctor, size of the facility, and location of the practice.

What does the science say?

A study sponsored by Medstar Health Research Institute published on March 1, 2020, in the American Journal of Obstetrics and Gynecology studied 52 women with Lichen Sclerosus from 2015 to 2018.

The women were broken up into two groups. One was given 3 sessions of fractional Co2 laser treatments 4 weeks apart. The other was given a topical corticosteroid, clobetasol propionate, to apply nightly for one month and then three times weekly for 2 additional months.

They were checked up at 1- month, 3- months and 6- months to monitor their symptoms.

At the 6-month checkup

89% of laser patients rated their symptoms as being “better or much better” on PGI-I compared to 62% of steroid patients.

Overall, more patients were “satisfied or very satisfied” with the laser treatments compared to the steroid. The only complaints were minor burning and blistering at the laser site which healed in about a week.

Another study

Another study published in December 2019 in the Journal of Obstetrics and Gynecology Canada showed similar results.

This time they followed 40 women with Lichen Sclerosus. Again they had two groups. One group was given laser treatments and the other was given the topical treatment, betamethasone. They did a 1-, 3-, and 6-month follow up.

At 1- and 3-month follow-up, patients in the laser group had significantly greater improvement in LS symptoms (burning, itching, pain, and dyspareunia), better patient satisfaction, and greater reduction of sclerosis than patients in the topical corticosteroid group.

They concluded that

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

Platelet-rich plasma treatments or PRP use injections of your platelets, which have been harvested from your blood. These are injected into your vulva. They are supposed to improve the blood flow and “encourage tissue regeneration”, thus curing your symptoms.

The O-shot is a popular form of PRP treatment. One treatment of O-shot can range between $500-$1500.

What does the science say?

The Journal of the American Academy of Dermatology published a study funded by the Gynecologic Cancers Research Foundation in 2018. They created a double-blind clinical trial to see if there were any true benefits to PRP.

They studied 29 women broken into two groups. The first group was given 2 treatments of PRP separated by 6 weeks. The second group was given saline, placebo, injections on the same time schedule. Neither the doctor administrating the procedure nor the ladies knew who was getting what.

The results:

Of the 19 women receiving PRP, 5 had improvement in histopathologic inflammation between pre-and-post treatment biopsies, 10 had no change, and 4 had more inflammation. Of the 10 women receiving placebo, 5 had improvement, 4 had no change, and 1 had more inflammation

They concluded PRP was not a good treatment for vulvar Lichen Sclerosus and suggested there be further comparative studies.

Ultrasound Therapy

Ultrasound therapy sends ultrasound waves through the skin of the vulva. The thinking is to use sound energy to rejuvenate the skin and cure the patient of their symptoms.

A clinical trial published in August 2017 done in China and published in BJOG An International Journal of Obstetrics and Gynaecology studied a group of 136 patients with different forms of Lichens disease. Fortyfour of them had vulvar Lichen Sclerosus.

From March 2011 to June 2016 they gave the 44 women 1-2 rounds of ultrasound treatment. After a year 23 (52%) were cured (no symptoms) and 17 (39%) saw some improvement. At the 5 year checkup, 12 (27%) of the cured had regressed to prior symptoms.

They felt ultrasound therapy was a viable alternative treatment for Lichen diseases in general. I disagree when you look at the long term results for vulvar Lichen Sclerosus.

Conclusion

Well, if our medication stopped working now we know we have alternatives. Fractional Co2 laser treatments seem to be the most effective with minimal pain. Unfortunately, they are expensive and we don’t know how long the results will last. On the other hand, the odds of getting successful longterm results from PRP or ultrasound treatments are to low for my taste.

If you have had any of these treatments please share your experience in the comment section. We would love to hear if you are happy and how long the results have lasted.

Also, if you know anyone who is thinking of having these treatments please share. I believe every bit of information helps make better decisions.

I look forward to hearing from you soon. Have an amazing week!

By Kathy

I'm 42, a wife and mother of three. I have been suffering from Lichen Sclerosus since 2013. I started this podcast to build community and learn more about this incurable condition.

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