If you’ve been diagnosed with Lichen Sclerosus, there’s a good chance you’ve been given a prescription for a steroids. That’s because high-potency topical corticosteroids are the gold standard treatment for Lichen Sclerosus.
Unfortunately, the prescription doesn’t usually come with an explanation of what it does or how to use it. This leads to a lot of confusion, questions, and misconceptions about the safety and effectiveness of steroids for LS.
That’s where my guest, Dr. Jill Krapf, comes in! Dr. Krapf is a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Tampa, FL. She’s an invaluable resource for those living with LS and helps them understand the condition and treatment. In this blog, we talk about how topical steroids help treat Lichen Sclerosus and how to use them properly.
Why are topical steroids used as a treatment for Lichen Sclerosus?
Before we talk about how to apply steroids, it’s helpful to understand why they are the most common treatments used for Lichen Sclerosus. Once you know how the condition changes your skin, the recommendations for applying it will make more sense.
How Lichen Sclerosus Inflames the Skin
When you have Lichen Sclerosus, your body doesn’t recognize a certain protein in your skin as part of yourself. Your body starts to attack it as it would a foreign object, causing inflammation in the skin. Because this protein is in the very bottom layer of your skin, inflammation forms in the basement layer and builds up into the higher layers. Think of this as a building with a busted water pipe that will flood the building.
This layer of inflammation causes changes to the skin, which are the symptoms of Lichen Sclerosus. The skin thickens, it may tear, become sticky, and cause scarring or fusing around the clitoris, urethra, or vaginal opening. The skin may also develop a wax paper texture or crinkly appearance.
How Steroid Ointments Help
“Topical steroids decrease inflammation,” says Dr. Krapf. “When they’re applied, they need to absorb through all the skin layers to get to where that inflammation is located. That skin is so thick, it’s hard for the steroid to get all the way down there unless you’re applying it the right way.”
Decreasing inflammation with topical steroids helps the skin function how it’s meant to. It becomes more elastic and can stretch more easily. This helps heal existing tears and also helps prevent future tears.
One of the fears that pop up with topical steroids is that they will thin the vulvar skin. But it’s important to know that, when used properly, steroids will not thin skin affected by Lichen Sclerosus. That’s because the skin is not normal skin. It’s inflamed. Even if tears are present, it’s not because the skin is too thin.
“When we see tears, it’s not like tissue paper tearing,” explains Dr. Krapf. “Instead, it’s like a thick sidewalk of concrete cracking. The tears occur because there's no give to the tissue. The tissue cannot expand. It's not elastic. It can't stretch like normal tissue would. And when it can't stretch, it tears.”
Even when a person with LS is in remission, the inflammation is still building in the bottom layer of the skin. That’s why a maintenance routine is so important.
How should you apply topical steroids?
If you’re using a topical steroid to treat LS, it’s so important that you learn how to apply it properly.
“Unfortunately, with this condition, if you’re not using the medication optimally, then you may not be getting the treatment that you need, or it may not work as well,” says Dr. Krapf.
Ideally, you would have an amazing Lichen Sclerosus specialist to walk you through the best way to apply topical steroids for your specific situation. But, unfortunately, many of us don’t. So here are some general guidelines to follow to make sure you’re getting the most from your topical steroid.
Where to apply your steroids.
Your provider should indicate where precisely you need to apply your steroid. As mentioned above, this is often not the case.
Some providers, such as Dr. Ulrike Deahack at the British Columbia Centre of Vulvar Health, recommend a thin layer on all the nonhair-bearing parts of the vulva. Understandably, many people are worried about healthy skin thinning. This is not an issue for most, as vulvar lichen sclerosus skin tolerates steroids well, even when there are no visible signs or symptoms.
If you're not a one-and-done type, apply the steroid wherever you have signs or symptoms, such as white skin, itching, or tearing. This includes the hair-bearing parts of the vulva. Although, according to Dr. Krapf, LS does not extend into the groin area, it can affect the mons pubis, the hairy area above the clitoral hood. It is also common to get fissures along the hair edge of the labia majora. These areas can be treated with steroids.
Although not referenced in any studies, I also recommend applying to the labia minora and clitoris and clitoral hood as a preventative. These are the areas that tend to be affected by fusing and resorption. If you are not doing monthly vulva checks, you may not be aware of these symptoms until there are significant changes, which may not be reversible.
If you do apply the steroids where you do not have signs or symptoms, and you feel burning or irritation after, this could be your body's way of telling you that you don't need steroids there. Skip that area and continue with the rest of your routine. The skin will heal, and you will be protected everywhere else you need.
Opt for a steroid ointment instead of a cream.
In general, a steroid ointment is recommended instead of a steroid cream. Ointments are thicker, making them more soothing and moisturizing to the skin. It’s also easier for the medication to penetrate down to the bottom layer. Creams tend to have alcohol in their bases, which may burn if you have fissures or small cuts.
Soak for 15-20 minutes before applying.
Before you apply your topical steroid, it’s important to soak first for 15-20 minutes. This will soften the thickened skin of Lichen Sclerosus, making it easier to apply the steroid and help it penetrate to the bottom layer. You can soak in warm water with or without anything in the water.
While soaking is the gold standard before applying, there are options if soaking doesn’t work for you. Dr. Krapf says the next best thing is to have a warmer or hot shower, pat the area dry, and apply the steroid right away afterward. If you’re traveling or can’t shower, you can hold a warm washcloth to the area for 10-15 minutes, then pat dry and apply.
“It depends on how thickened the skin is. If the skin is very thickened, then I would definitely recommend soaking first,” says Dr. Krapf. “As the medication is working over time and the skin becomes more healthy and less thickened, you can probably get away with some of these other logistical ways.”
Use a pea-sized amount.
When it comes to topical steroids, more isn’t necessarily better. You really only need a pea-sized amount each time you apply, as long as you’re doing it the right way.
“It’s more important to do it in the exact correct way rather than slathering this all over the place and thinking that more is better, when actually it’s about technique,” Dr. Krapf says.
Dr. Gayle Fischer, a dermatologist with an interest in vulvovaginal skin, once explained in a podcast I listened to that if the Lichen Sclerosus skin is white, you’re not using enough steroids. If it’s red, you’re using too much. You want your skin to be right in the middle. And, you want to be sure to listen to your body. When I’m treating a flare-up, if I start to feel burning and irritation after I apply, I know it’s my body saying I can taper down the steroid.
According to Dr. Krapf, too much topical steroid can also lead to a vulvar yeast infection.
“It’s not like a typical yeast infection that you would think of with the white clumpy discharge and all of the itching. It’s more of a baby diaper rash kind of yeast. Sometimes we will see that, especially when people are applying too much,” she explains.
Rub it in well.
After you’ve soaked, pat the area dry and apply the topical steroid. Be sure to really rub that steroid in to help it penetrate all the way down to that bottom layer. Even if the skin is softened by soaking, it won’t penetrate if it’s just a layer of steroid on the top of the skin.
In general, Dr. Krapf recommends that people rub in their steroids for a minute and a half or even two minutes. It seems really long, but a timer can help make sure that you rub it in long enough.
How often should you apply topical steroids for Lichen Sclerosus?
How frequently to apply the topical steroid will depend on your clinical situation of how thick the skin is, and where the thickened skin is. You may be advised by your health care professional to apply more often if you have a lot of inflammation or less often if you are in remission.
Dr. Krapf has a personalized way of teaching each patient how and how often to apply their topical steroid. She color codes a picture of a vulva to show where to put the medication, how long to rub it in, and how frequently to apply it. That’s because not all areas of the vulva and around the anus are going to need the same treatment. You may have some areas that are showing more inflammation than other areas. Eventually, as you get closer to remission, every area of the vulva and around the anus will be on the same schedule.
If your provider can not give you an individualized plan, the general guidelines developed by the British Association of Dermologogy may give you some guidance. They are
- One a day for four weeks
- Every other day for four weeks
- Twice a week
One important thing to know is that steroid cream and steroid ointment will have different recommendations because of how strong they are. The ointment is more potent and typically should not be applied more than once a day.
Do you still need topical steroids once you’re in remission?
The goal of topical steroids and other treatments for Lichen Sclerosus is to get a person into remission. Remission is when the skin no longer appears thickened. The wax paper-like texture has been resolved. Getting to remission depends on your starting point, but according to Dr. Krapf, it can take up to three to five months. Some studies say up to 12 months.
This is where recommendations for maintenance vary between Lichen Sclerosus providers. Some say that as symptoms improve, you can stop using the topical steroid. However, Dr. Krapf recommends a maintenance program of applying a topical steroid twice a week.
She references a study where women who were consistent with applying steroids twice a week and received an annual follow-up were less likely to develop vulvar cancer. That study, as well as other studies and the full breadth of research, convinced Dr. Krapf that a maintenance application of topical steroids is best.
“If you’re applying it in the right way, and you’re just using a pea-sized amount, and you’re just doing it twice a week, the risks are really, really limited, and the benefits are really great. You’re helping to prevent further fusion, you’re preventing symptoms from recurring, and you’re also preventing progression to precancer and cancer.”Jill Krapf, MD
How are you going to use topical steroids to treat your LS?
So now you know how to use your topical steroid treatment for Lichen Sclerosus properly. Having this knowledge has changed people's lives. People who thought steroids did not work for them are now living symptom-free. Newly diagnosed folks are getting into remission quicker. Now it's your turn.
To get more information on what LS is and how to take care of yourself, check out our LS Overview page. Are you going to change the way you use topical steroids to treat your LS? Let us know your thoughts in the comments.
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