If you’ve been diagnosed with Lichen Sclerosus, there’s a good chance you’ve been given a prescription for a steroid ointment or steroid cream. That’s because high-potency topical corticosteroids are the gold standard treatment for Lichen Sclerosus.
Unfortunately, a prescription for topical steroids doesn’t usually doesn’t come with a lot of explanation on what it does or how to use it. This leads to a lot of confusion, a lot of questions, and a lot of 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 Washington, DC. 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 steroid ointments, it’s helpful to understand why they are one of 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, a layer of inflammation forms in the basement layer, or basement membrane, 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, and it may 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.
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.Â
Learn more about steroids and bases here.
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.”
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.
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.
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 tell 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, can take up three to five 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. But 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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Thank you so much for this very interesting article which answers many of my questions. I am thinking I might change my steroid to ointment and am going to take more time to apply correctly and take more time.
Thank you your articles are much appreciated x I am happy for my first name to be used, Susan
We’re so happy the article has been helpful. We have even more helpful topics planned for the future.
I have ls. Have steroid cream. It says to put it externally on the vulva.can u tell me how to
do that? I’ve been putting my t under the flap of skin where I shave? From the top to the bottom. Is that the right way. Only the right side is effected so I only put it on that side. Thx
This is a great question, Hilary. Ideally your provider will tell you exactly where and how often to apply the steroid. Unfortunately that’s not accessible to most of us. So from talking to hundreds of people with LS and my research, I apply it on my mons pubis (because I have symptoms there), my clitoral hood, inside my labia majora, my labia minora, and once a week my perineum. My opinion is to apply where you have symptoms (including the anus) and for preventative reasons the labia minora, clitoral hood, and perineum. I do my labia minora and clitoral hood to combat fusing and resorption. I do the perineum because I know this is a common problem area with sex for many. If I had issues with fusing at the vaginal opening or anywhere else I would also apply it there. If I had a problem area I would increase my schedule on that area only and continue using a maintenance schedule everywhere else. If I saw I was getting red or irritated I would reduce my schedule. Most importantly, ALWAYS listen to your body. Everyone is different and you may react differently. Adjust as needed. I encourage you to join one of our 2-4 PM ET virtual meetups. This is something we discuss in our education class. You can get more information at lssupportnetwork.org/connect
Thank you very much for all the great information here. I have a much better understanding now of this condition. My gyn is good, but she zipped through the follow up session (after biopsy) and I left feeling a bit confused. So again, thank you! What a scary thing it was to hear “your labia are fused”; and what a relief to know that if I apply the ointment correctly/thoroughly, and follow up regularly with gyn, I can best keep this whole situation at bay.
You are so welcome! Yes it is definitely a jolt to the system when we first learn about this condition but it’s good to know that it can be managed.
Your article has really made me think about how I apply the steroid ointment. I got very little in the way of advice from my gynae. and no follow up so your articles are invaluable and very much appreciated.
Thank you
We’re so happy! I got the same treatment. It wasn’t until my conversation with Dr. Krapf that I learned the science and proper way to treat. It changed my life, and now I’m over a year in remission. I hope you’ll be able to say the same soon.
Thank you so much, very helpful and new to me! You talk about Dr Krapf picture of a vulva to show where to put the medication, how long to rub it in, and how frequently to apply it. Can I find this somewhere?
Hey Maaike! The diagram is just a drawing of a vulva that Dr. Krapf color codes for each of her patients. It’s not a general application handout. You can print any vulva diagram out and ask your provider where you should apply and how often. Unfortunately, this should be individualized. I hope this clears up any confusion.
Hi Anne
I have struggled with LS for 7 years and yesterday was the first time I heard of anyone else with it, and today I find your blog. Thank you for this.
I have chronic LS, which I have attempted to manage with steroid ointment.
Thank you for your advice on soaking it in warm water before applying the steroid, I have nevner been advised of this before.
Jane
I just had my 2nd Mona Lisa procedure. My doctor says I should stop I using the clobetosol ointment & I stopped inserting IMVEXXY (estradiol vaginal inserts)
I’m going crazy with the burning & itching & not sure what to do.
Hey Dianne. I encourage you to reach out to your doctor. Mona Lisa has not been proven to be an effective treatment for LS. Ultimately you are the CEO of your body and how you treat it. Steroids have been researched for over years for treating LS. While they are not for everyone they have been proven the most effective for the most people. If they are working for you, I would discuss with your doctor why they want to take you off of them. It may help to get a second opinion from a vulvar specialist. Check out our provider directory for provider referrals. lssupport.net/providers
Thank you so much for sharing this important information! I would like to ask: should the steroid be also applied on the fissure? Do not wish to prevent it from healing…
Hey Tereza. Fissures are usually small and it’s ok to apply the steroid. When we have a tear, which tend to be bigger, you want to apply to slow down the healing so that it doesn’t create more scar tissue. It’s best to discuss with your doctor how you want to go about treating them. Hope this helps.
Hello,
Thank you so much for the information,it was so helpful.
I have been in remission for over 7years now which my specialist tells me,however even using the ointment twice a week I still feel a little tingle sore every now and then.
There’s no cracking,red or white signs just feel a little irritation every now and then.
Is this normal even though in remission.
Look forward to your answer
Thank you
Hey Shanell! congrats on being in remission this long. Yes. It’s not uncommon to have these feelings. Being in remission doesn’t necessarily mean symptom free. I get fissures every once in a while. They last a day or two and then I’m fine. Usually I just increase my moisturizer and all goes back to normal. Thanks for the question.
What moisturizer do you recommend?
You don’t need anything fancy. Coconut oil is a popular moisturizer. Jaclyn has a couple of videos on her channel that should help. Emollient: One of the Most Overlooked Products for LS https://youtu.be/pxrP_Gzfe_Q Lichen Sclerosus Emollient Review: My Favorite Products for LS https://www.youtube.com/watch?v=fRf_-Pmh9QY
Thank you! Thank you for this invaluable information! Like many others, newly diagnosed, I’ve been left in the dark to search for “how to” and answers with LS. I will be forever grateful for this information!
You are very welcome! I’m glad we were able to help.
This has been very helpful as I don’t feel there is enough attention given to the condition here in England. I am treating a flare up now and after moving have a different surgery. I was given cream despite having requested dermavate ointment and had reaction..now on the ointment and have just discovered hydromol as moisturises were never discussed. I am hoping it will help .
I hope you get relief fast and you’re able to manage better with the ointment and moisturizer.
I’ve been diagnosed for about a month now, and like others, very much left in the dark on any proper instructions..
Just to be sure, is the area to be treated all the way from the clitoris to the anus?
It’s not uncommon. That’s why this is so important.
You should only apply it to the anus if you have been diagnosed with anal LS. Because the skin there is already thin you don’t want to accidentally apply it to health tissue.
Sending you hugs and hope. 🥰🤗
Hello All! Im newly diagnosed. How do i properly apply? Please help!
Hey Tammy! I’m sorry you got this condition but I’m glad you got diagnosed. Everything on how to properly apply is laid out in the article.
I have been diagnosed with LS and had a biopsy today to rule out cancer. I was told to start on the Clobetasol regime for 3 months, but I am unsure if it is wise to start putting the steroid on while healing from the biopsy? should I wait a few days?
Hey Carla. You can skip the biopsy site and then apply there after you are healed. Steroids slow the healing process so it may help to wait. If you have any issues with the biopsy site contact your provider as soon as possible.
Is it safe to apply steroid on vaginal opening when there are LS symptoms? This article is so helpful, much appreciated!
Hey Kate! Thank you for your kind words. It is safe and recommended to put steroid at the opening of the vagina if you have symptoms there. Something I learned is that the “introitus”, opening of the vagina, is considered part of the vulva not the vagina. 🤔
Is it normal for the clobetasol to burn or turn the tissue red when first beginnning clob treatment?
I have only been using for3/1/2 days and this is happening.
Thank you so much for this information! I have seen a lot of different doctors since my biopsy came back and none of them broke down half of what this post did! All of them just told me we don’t know and this is a trial and error process.
You are so welcome, Jordyn! We’re happy to get the information out there.
Hi! Do you have any opinion about using Clobetasol lotion instead of ointment or cream. The lotion consistency is like liquid. I was at a pharmacy abroad (Thailand) They only had cream or lotion. Was told lotion absorbing faster compared to cream and ointment. Bought the lotion and tested one time. Burned a little on the skin, maybe it’s alcohol in.
According to the information from our experts and the literature we’ve seen ointment is the number one best method of application followed by cream, which tend to have alcohol in the base. I will say I use Halobetasol which has a lotion type constancy and I love it. But it is a Halobetasol ointment. We believe it’s important to find what works for you.
This is great information. I’m in Canada. I’ve had LS (seen by GP) for over a year (noticed by sight), and finally got to see a gynecologist two weeks ago. She pointed out many vulva areas affected, but I can’t recognize them all, tho I was looking in the mirror as she pointed them out. I can only recognize what’s actually glaring white, thick, and wrinkled, other areas that are simply thin, I can’t recognize because the color is normal for me. She told me to use the steroid ointment and estrogen cream on alternate days, so for now, I’m just using the steroid on the glaring white areas. No biopsy on any area unless the ointment fails to start working in two months. I had zero LS symptoms before, no itch, no pain. not even in the fused areas. Now, after starting the steroid, there is pain in the original area, the thickest area, and it radiates into the bone and lymph nodes. I’m not sure what that’s about, but I’m hoping it will stop once the LS starts getting better. Fingers crossed. Thanks for the info. I find your site very useful.
Hey Lili! Thank you for sharing. I hope you start feeling better soon. I’m glad the information was useful.
I find the itching almost unbearable, nothing much helps and it’s so debilitating.
Hey Sharon, same, gurl same! When itched it was the worst. I even did a whole podcast episode on it. 7 Ways To Stop Vulvar Itch From Lichen Sclerosus https://www.youtube.com/watch?v=vPfUsnYuB2M
Thankfully it was one of the first symptoms to go away when I started using my steroid properly. I hope it’s the same for you. 🥰🤗
Hello, you mention a moisturizer. Is it in addition to the steroid treatment? If so, is there a kind I should look for? I’m in Canada. Many thanks.
Hey Sarah! Yes you want to use a vulvar moisturizer as well as your steroid, as steroids can be drying. You don’t need anything fancy. Coconut oil is a popular moisturizer. Jaclyn has a couple of videos on her channel that should help. Emollient: One of the Most Overlooked Products for LS https://youtu.be/pxrP_Gzfe_Q Lichen Sclerosus Emollient Review: My Favorite Products for LS https://www.youtube.com/watch?v=fRf_-Pmh9QY
THANK YOU!!
Hi, I use pure castor oil everyday. Just a very small amount and it seems to be working well. I add one drop of pure lavender oil too.
Hello,
My gynaecologist prescribed Linoladiol HN cream as a topical steroid for my early stage LS. I live in the European Union (EU) and have read that this is no longer recommended as effective by the EU Medicines Agency. Would you have any info on whether Linoladiol HN cream is recommended?
Thank you!
I’m sorry. I’m not familiar with that medication. I know most people are getting prescribed Dermovate, which is Clobetasol, in the UK.
How long until the cream stops the burning and symptoms please?
Hey Kate! It’s very individualized. It can take anywhere from 3-5 months to reach remission, which for most people means being symptom-free. If you find your skin is looking good and you’re still having burning you may want to be evaluated by a pelvic health physical therapist as burning is can also be a symptom of overactive pelvic floor disfunction. Check out this interview where we go in-depth on the subject. https://lssupportnetwork.org/lichen-sclerosus-and-overactive-pelvic-floor/
My doctor gave me a weaker steroid, in a lotion, and told me nothing about soaking before application or rubbing it in. It helped with the itching, but did not put me in remission from LS. I was very unwell and dealing with other medical issues and have only just realised that two-thirds of my inner labia have diappeared. I imagine there are problems with my clitoris too, although I faint easily and have been too upset to check. (I have an enlarged abdomen due to failed surgery so can’t see my genitals “by chance”.)
One “side effect” of rubbing in a topical treatment for 90 seconds would be that you could feel structural changes. Not that this is any substitute for a self-exam or exam from your doctor, but I keep thinking if only she had told me to rub it in for 90 seconds, or I had looked this up, I would have caught the labia changes ages ago. It seems like she got every aspect of my care wrong, and because I was so ill I never checked what she was telling me.
Now I have to argue with the clinic to organise urgent stabilising treatment while I wait for a specialist. Nightmare.
This post and these answers have been super helpful. My last question is: how can you make sure you don’t accidentally apply the cream to your anus and by mistake your vulva, i.e. how do you make sure you don’t accidentally give yourself a bacterial infection. I’ve started applying to the vulva first and then the area between my anus and vulva and then a little around the anus (where I have lichen) and then I end my treatment, but I worry about cross-contaminating, forgetting…I don’t think this has been addressed anywhere.
WOW! Best I have ever read. Thank you very much
Mig
You are so welcome!