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?
The critical part of topical steroid use in treating Lichen Sclerosus is ensuring the patient is applying their steroids optimally. Both the schedule of steroid application and how it is applied to the genitals are crucial for success.
“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.
Preventative application
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.
Use an ointment versus a cream. Ointments are more potent and last longer within the skin. Furthermore, many creams contain alcohol. For those with tears or fissures, this can cause additional burning, deterring many from steroid use and leading people to think they have a poor reaction to the medication.
Learn more about steroids and bases here.
Soak for 15-20 minutes before applying.
Soak for 15-20 minutes in warm water before applying the steroid if LS is active (if there is thickening of the skin). Patients can use a tub, sitz bath, litter box, kiddie pool, or shower for soaking. Soaking softens the skin and opens the pores, enabling the steroid to penetrate deeper, closer to the bottom layer of the skin, targeting the deepest inflammation. If LS is in remission (no thickening or patches), it is fine to apply the topical steroid after a warm shower. It’s important to gently pat dry after soaking before applying the steroid to remove any water, which could prevent the steroid from being absorbed.
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.
Use between a fingertip and a half a pea-sized amount for the ENTIRE area. A little goes a long way, and more is not necessarily better. Work your way down to the minimum you need without symptoms returning. Using the minimal amount will ensure medication overuse (which can lead to side effects) does not occur.
Rub it in well.
Rub the ointment in until it is sufficiently absorbed. For a small area, this may take 30 seconds; for a very large area, this may take up to two minutes. Due to the high levels of inflammation LS causes, soaking alone is often insufficient in allowing the steroid to penetrate deep enough. Rubbing the ointment in until it is fully absorbed allows the medication to penetrate deeper into the skin, increasing its likelihood of reaching its target. However, it is important not to scratch the skin while rubbing or to rub so much that the skin breaks down. Although excessive rubbing or scratching may feel good at the moment, it can lead to overlying conditions, such as lichen simplex chronicus (itch-scratch-itch condition) on top of LS.
How often to apply ultra-potent topical steroids to treat Lichen Sclerosus (LS)?
Steroid schedule guidelines vary from country to country, as well as by steroid potency. Unfortunately, these inconsistencies confuse patients and practitioners, making it hard to know which treatment plan is accurate.
It’s important physicians learn the guidelines and then develop treatment plans tailored to each patient’s unique case. Not only should they create individualized treatment plans, but they also need to explain them to the patients so they become partners in their care.
The following are general application guidelines in the United States for ultra-potent topical steroid ointments for ACTIVE vulvar lichen sclerosus, but again, they vary even among individual doctors, the type of topical steroid used, and how severe your individual condition is on medical examination.
- Once a day, every day for between 2-6 weeks (depending on level of disease activity).
- Then once every other day for between 2-6 weeks (depending on level of disease activity).
- Then, two times a week for life to prevent symptoms from returning. Two to three times a week is considered maintenance, depending on the level of topical steroid you are using.
- If symptoms return, begin the schedule over again and consult with your doctor.
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.
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.
Virtual Meetup Information
If you’d like to share your voice in person (virtually), join our next virtual meetup.
We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.
Share your experience and heal. I have met many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up HERE for notifications and updates. I cannot wait to meet you!
Did you find this article helpful?
If you found this article or website helpful, we’d appreciate your financial help to continue providing resources and services like this. Click HERE or the donate button to show your support today.
Hi I was wondering if steroids or other treatmets are able to restore the skins natural pigmentation back I’m naturally brown and the vulvar skin has become light pink is it possible for it to go back to being brown thank you
It is possible to get the color back but it could take lots of time. Check out this resource on skin pigmentation. Vulvar Lichen Sclerosus and Skin Color Changes – https://lssupportnetwork.org/vulvar-lichen-sclerosus-and-skin-color-changes/
I’ve been dealing with a vulvar and anal skin issue for 2.5 years. Pain, redness, burning, skin splitting, frequent UTIs after sex and urgency, painful bowel movements, and rarely red spots. Sudden onset on a specific day in August 2022. Started in the clitoral area and spread to the anal area. Itching for 4 days that evolved into all the symptoms described above. No white plaques or itching. I’ve seen 5 gynaecologists and all have said it’s not LS. A recent dermatologist said it is LS and said it doesn’t need a biopsy because she’s sure.
Can LS cause the symptoms described? The UTIs and urgency are most confusing.
I’ve just started a daily steroid treatment (3 weeks in) on betaderm (0.1%) which may be decreasing some symptoms but is making the skin more red and look a bit bubbly like a ready-to-peel sunburn. I can’t get ahold of the dermatologist to ask for her input. I’m desperate and would love your feedback and to join your community. Thank you for the thorough information!
So sorry you’re going through this. Some the symptoms you described could be attributed to LS but they could also be lots of other things. The fact that the steroid is making things worse could be an indicator there is something else happening. The only way to know for sure is a biopsy. Here are some resources they may be able to help.
I hope these help. If you do decide to get a biopsy check out our biopsy checklist. lssupportnetwork.org/biopsy
I was recently diagnosed with LS and started on Triamcinolone. I’m wondering if the medication will reveal my clitoris again or if it’s “gone forever.” Thoughts?
Hi Emily! There are several ways to reverse clitoral fusing. Check out these resources Help! I Can’t Feel My Clitoris. Now What?
– https://lssupportnetwork.org/help-i-cant-feel-my-clitoris-now-what/ and https://lssupportnetwork.org/?s=clitoris Good luck!
Hi Kathy,
Just diagnosed with LS this week but my GP. Unfortunately, I just got a phone call saying “the doctor called in a steroid cream”. I looked at the prescription in my online portal and it’s triamcinolone acetonide 0.025% twice a day and says it comes with 60 applicators…. But I am seeing Clobetasol is the steps for LS.
The office is closed for the holiday weekend, and I will get in touch when they reopen but I was wondering if you had any insight on this. Hearing “applicators” makes it sounds like it’s for internal use (as you would do with a yeast infection) but my LS is on my mons pubis and the clitoral hood area has swelling.
Appreciate anything you can speak to and thank you so much for providing this website as a resource for us all!
Best,
Kay
Hi Kristin! So sorry you have this condition. I’m glad you found us so quickly. Triamcinolone is a weaker steroid then Clobetasol. A couple of reasons your doctor would prescribe a weaker steroid are they feel your case does not warrant an ultra potent steroid or they may not be very educated on steroids and are afraid to prescribe such a strong steroid. I don’t know about the applicators but we do not use the steroid internally for lichen sclerosus. I encourage you to read these resources we have concerning steroids as well. https://lssupportnetwork.org/lichen-sclerosus-treatment-series-part-1-steroids/ and https://lssupportnetwork.org/lichen-sclerosus-treatment-series-part-2-steroids/
Hi Kathy, thanks for the great info and support 🤍
I was diagnosed 3 months ago. Steroids worked fine for a while. I started having problems (dryness, skin cracking, etc) on the finger I used to apply them though, so I started using nitrile gloves. I’m in a flare-up now, wondering if the gloves changed my routine or caused a reaction.
Do you apply your steroids directly with your finger? Do you have any recommendations on how to avoid side effects on the finger’s skin?
Thanks again!
You are so welcome! I’m glad our resources have been helpful.
I have used my bare finger for the last 5 years of applying my steroid and have not had a reaction. That being said every one is different and some members do report a change.
Personally I minimize how long I have the steroid on my finger by washing my hands really well with soap and water under warm water and then applying hand lotion. I’m currently on a twice a week schedule so my exposure is even less then those that are just starting their schedules.
We did have a member who started using latex gloves and had a reaction to the latex. Once she went back to her bare fingers her skin healed. Is it possible your vulva is having an allergic reaction to the gloves? The LS vulva skin is different then other areas of the body and maybe have a reaction to things that are normally fine.
An alternative to gloves are finger cots. They are like gloves but for individual fingers. I’m not sure of all the different materials they come in but that could be something to try.
I hope you feel better and find a long term solution quickly. 🥰🤗
Thank you for your answer 🥰 I suppose I may be having a reaction, yes, I’ll try finger clots from a different material, sounds like a good starting point. Let’s hope it’s just that and my steroids keep working 🤞🏻💛
Hello
I have been diagnosed with LS. 4 days ago I had a vulvar PRP session. Should I keep using Dermovate? Also, I have pain whenever urinating. Should I apply Dermovate on/around urethra?
Thank you
Hi Aurelija! I hope you are feeling better. Studies have not shown PRP to be an effective management treatment for lichen sclerosus but could be used in conjunction with topical steroids to help people with hard to manage LS. I encourage you to read these posts. https://lssupportnetwork.org/platelet-rich-plasma-for-lichen-sclerosus-experimental-treatment-series/ https://lssupportnetwork.org/lichen-sclerosus-treatment-versus-adjunct-therapy/ Also check out this video interview with Dr. Racheal Rubin on LS and urethral tissues. https://lssupportnetwork.org/vulvar-lichen-sclerosus-and-urethral-health/ In the meantime you can try using a peri bottle or bidet while you pee to keep the urine off the skin. It’s probably the urine irritating fissures or tears causing your pain. Good luck!
Hello,
Recently diagnosed without biopsy, apparently mild. Have consistently had mainly burning. I’ve been using Dermovate/clob every day, now every other day for second month. I am just getting red and the burning has been unbearable :(
I thought it helped a little at the start but now after application it is just making things worse. Dr didn’t take it seriously to start with that it was irritating me but now has switched me to hydrocortisone butyrate which I’m due to start soon. I’ve been reading all the advice and trying to do everything correctly. Any thoughts on why I could be getting worse?
Hi Alena! Sorry you’re going through this. We’re not medical professionals so don’t give medical advice. It sounds like you may have steroid overuse. If it were me I’d stop for 4-5 days and let my skin heal. Then I’d start back at every other day. If I started feeling irritated and getting red again I would pull back to 2x a week (ex. Mon/Thur or Sun/Wed). This is considered maintenance. If I’m still having the same issues I’d look to see if I’m allergic to the medication, have a secondary condition, and have the correct diagnosis. In the meantime I would also try to get in with my provider to get checked out. I hope you feel better soon. 🥰🤗
I am completely reliant on my bike for everything. I read one should avoid biking until symptoms subside. This is very difficult for me.
Hi Mic! Many people with VLS still ride bikes. You may need to make some adjustments such as getting a seat that does apply pressure or friction to the vulva. We’ve had this discussion in our private group and there were many recommendations for gel seats with holes in the seat for the vulva area. You could also use a Sili Saddle. It’s a silicone insert used to cover the vulva much like a jock strap in men’s sports. This may not even be an issue when you go into remission. Overall do not give up on your bike yet. 😁
I am about to do a 185 km bike ride for MS tomorrow. It’s over 2 days. I just finished with what I thought was a flare up but was an awful yeast infection. My gyno never told me clob could cause that. I’ve had LS for probably 15 years but was diagnosed 8 years ago (I’m almost 72). I’m good now and will just apply and reapply aquaphor. What I’m worried about is the temps that will be above 30. I may have a flare up next week after the long ride which has happened in past years. But I’ll deal with that as it happens or not. Love my bike riding!
Hello,
I was diagnosed with LS a few months ago after symptoms for probably a decade. I was prescribed Clob and have been using daily but I feel I’ve developed worsening redness and soreness of the labia. I wonder if it’s because I’ve been using too much steroid? Perhaps it’s a thrush? Any help would be appreciated as I was so happy to finally have a diagnosis but now feel I’m taking steps backwards!
Hi Zoe! I would encourage you to get checked out with your provider as it could be either of these or a different condition.
Hello,
Newly diagnosed and having a hard time finding more help than being told it’s LS use this on it for 2 weeks.
I’ve been shown where the white locations are and have been applying. They did not address other concerns or seem aware of them.
Questions I do have are:
1. I have dark spots on the inner labia and extending inside that weren’t there before. Is that also LS and can or should clobeatsol be applied to any of the inner areas?
2. I had no burning before starting the clobeasol anywhere, now my whole vag is burning. Even locations the ointment was not applied.
Thanks for any suggestions!
Hi Amy! Sorry you didn’t get more information when you were diagnosed. LS can cause dark spots from post inflammation. Check out this resource. https://lssupportnetwork.org/vulvar-lichen-sclerosus-and-skin-color-changes/
LS does not affect the vagina, only the vulva, the external genitals. I encourage you to see your provider to talk about these new symptoms as they could indicate a secondary condition.
When remission stops and new lesions are present. Do you treat only the new lesions or all the old ones too? So basically would I be treating everything all over again from the start with the Clobetasol regime?
Does remission mean no more visible white spots? Can the skin not be thickened but still be white? I understand that remission can take more than 3 months but can I use the ointment past the once a day for a month application guidelines before I start using it every other day? Because of the potency is it not advised to use daily for more than a month?
Do I rub all the LS sections with steroid ointment for 90 seconds total or each individual area for 90 seconds each?
You do the whole area for 90-120 seconds.
Hi! I have been recently diagnosed with ls after I saw my labia minora disappear and clittoral hood disappear with shiny white patches around my anus/ perineum as well. A biopsy was taken from the introitus and the result shows lichen simplex chronicus. Does LSC have same clinical picture of fusing? Also i was just given deemovate and read about estrogen cream on this site. Do I need eatrogen cream as well?
We have information on LSC that may help you. Lichen Simplex Chronicus And LS: What’s The Difference? – https://lssupportnetwork.org/lichen-simplex-chronicus-and-ls-whats-the-difference/
Not everyone gets estrogen. It’s given when there are also signs of atrophy. Here’s a video that talks more on hormones. What’s The Deal With Hormones And Lichen Sclerosus? – https://lssupportnetwork.org/whats-the-deal-with-hormones-and-lichen-sclerosus/
I hope you get better quickly. 🥰🤗
Thanks for so much helpful information.
You’re very welcome!
I’m sorry Eva. Im very new to LS myself. It’s overwhelming at minimum. I’m also not the most tech savvy so im not benefitting from all the support that I think this group offers. I think the vaginal opening and urethra area is different than the labia area. MUCH different in fact MORE delicate. Remember more is not necessarily better so stick to a pea size amount and rub GENTLY for the 90 seconds. This LS stuff is like the devil … the harder you try to stomp it out the more it rears its ugly head!! It’s difficult to apply the ointment and even more difficult to be certain you know where the LS is unless it is a blatant white spot !!! Do the best you can and know you’re not alone. We all hate it !!
My anus feels a bit sore and itchy now so should I use my steroid cream there?
We do not recommend applying steroids on the anus unless you have been diagnosed with anal LS. You can do more damage then good. there are also a lot of different reasons your anus can feel sore. I encourage you to see your provider if it does not improve.
Thank you. All the questions and answers are very useful. I have been diagnosed just week ago, just by visual examination. My symptoms were mild burning pain and signs of white patches or porcelain white plaques near the entrance to vagina and a little bit of redness. After applying the steroid ointment correctly to the effected area my condition seemed to get worse, the area is very painful and burning while urinating. Is normal for the situation to get worse before getting better.
In some rare cases it may get worse before it gets better. It may also be a sign of something else going on down there. We always recommend reaching out to your provider for follow-up. There could be several reasons you hare having a negative reaction. 1. You don’t have an inflammatory condition. 2. You’re having an allergic reaction to the medication. 3. You’re using to much. 4. You have a secondary condition that’s not being addressed. Your provider can access you and help you move forward. Be prepared that they may want to preform a biopsy to make a proper diagnosis. Good luck!
Most of this is new information to me. I’m just overwhelmed with my diagnosis of LS. My gyn says my case is very mild. Confirmed with biopsy that hurt like hell! No directions for after care of that either. She said only apply clob if white spot is itchy or sore. What the heck. Not at all correct. Never mentioned soaking. Moisturizer or rubbing ointment for 90 seconds. Said apply 2x daily for 2 weeks to spots. It’s hard to see just do the best you can. Really!! I can see one on labia minora. Looks like it’s shiny at clit/hood. White at vaginal opening, Perineum and anal areas. Wish I had taken my husband and made her show him where the LS is on my body!! I’m so frustrated and angry!! How does one find an LS specialist? My gyn acts like this is nothing very minor a lot of women have it . Doesn’t seem minor to me !!! This has caused me soooo much stress. I really want to see a LS specialist. Can Dr Krapf do virtual visits? Definitely want to join this group!! Thanks for the advise. Most informative. Tomorrow begins a new ritual of treatment.
Thank you for sharing your story, Franci. I’m so sorry you didn’t get the direction and after care you deserved. We have a provider directory where you may find a provider. lssupportnetwork.org/providers
Dr. Krapf does some virtual visits but you have to live in certain locations. You can get more information on her website at jillkrapfmd.com Dr. Corey Babb also does virtual visits and comes highly recommended. havencenter.com
I hope the new ritual bears fruit for you. It’s helped me be almost two years in remission.
Is there a infographic or visual simulation that would support specifically showing and demonstrating how to apply with animations and anatomical hellp?
Unfortunately, we do not have the funds to have that made right now. We discuss this in our Saturday Meetups. Also join our email list because we’ll be hosting an upcoming event discussing this.
Can you have sex after applying steriods, or shlould you wait and if so is there a recommended wait time?
There’s no research to answer this but speaking with different specialist, they recommend waiting 20-30 minutes after applying before applying another substance such as lubricant or moisturizers. Using lube every time you have sex to help reduce friction is highly recommended even if you feel you have good natural lubrication. We have resources on different type of lubes at What’s The Best Lube For Lichen Sclerosus? – https://lssupportnetwork.org/whats-the-best-lube-for-lichen-sclerosus/
I try to plan ahead and apply Clob after sex. I have a detachable shower sprayer and I clean up, blow dry the area, apply my Clob and I’m back to snuggle pretty quickly. Wishing you the best. You’re not alone in this and we ALL hate LS !!! 💕
Loved this interview, too. Oh to be a patient of hers! I’ve had LS for probably at least 12 years. Finally diagnosed myself after seeing 3 doctors, naturopath, a gynaecologist and a dermatologist! Finally found a ob/gym that agreed, though no biopsy. He gave me the opposite advice, use clobestasol only when flare ups so thank goodness I have listened to this and found other great blogs. I often get purple looking blisters. Should I apply the clobetasol on them as well?
I know, Deb, me too! Dr. Krapf says those are blood vessels near the surface of the skin that get broken due to the build up of inflammation. Yes you want to apply there. They will fade over time once the inflammation goes down but it can take a lot of time.
You’re also not alone with what your doctor told you. I was given the same info and continued progressing until I changed to Dr. Krapf’s method. It’s unfortunate but common. That’s why we need to get this information out there.
Thank you for your support!
This was a really great interview, and very informative. I have had LS for nearly 20 years and stopped steroids after the initial six years of treatment. I was doing many things right, but many things wrong. I obviously now have a very advanced state of damage, but believe I’m in remission or mostly in remission. I *think* I’d likely be classified as having ‘burnt out’ disease. But how could I use steroids effectively at this point. Do I still need the ultra-potent course? I’ve seen it recommended to use OTC steroid for burnt out LS, but do they mean at the maintenance dose? So much helpful information, and still so confused. I asked my specialist, and he was unsure if there would be any benefit of returning to steroids, but I still want to manage any underlying inflammation and prevent any further progression. Any thoughts or experience on this? I’d love to be a part of a virtual meetup, but I live in Europe! Thank you so much!
Thank you for your comment, Abby. Burnt out LS is not a term I am familiar with. While LS can be dormant and you can be in remission for a time it is important to monitor and treat accordingly. If it were me I would work with my provider to work out a schedule where I could be monitored at least every six months, while I do monthly vulva checks to catch signs of changes early.
We’d love you to join the virtual meetups. We have people from Europe in our 2-4 PM EDT sessions all the time. Hope to see you soon.
WOW! Best I have ever read. Thank you very much
Mig
You are so welcome!
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.
I have this worry as well.
I’m glad these have been helpful. I understand your concern. Speaking to the community, I will say this has not been an issue. I think the way you’re doing it is fine. If you are overly concerned, you could apply around the vulva first, wash your hands and then apply around the anus. Find a routine you are comfortable with.
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.
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/
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.
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.
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. 🥰🤗
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.
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.
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.
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.
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. 🤔
Hello Kathy, is it also ok to put the Creme where the urethra is? I don’t have burning or itching there but the inner parts of the small labia are really red and seem affected. At the moment i only have a gp and have been waiting for a gyn appointment for four months 😞. I fear it gets irreversibly worse until I can see a doctor. Thanks so much…
I would not recommend putting it there if you don’t have symptoms. LS doesn’t directly affect the urethra. We learned from Dr. Erin foster this past Tuesday and she said Lichen Planus can affect the urethra and shows up as red not white. Hopefully they can give you a clearer answer at your upcoming visit.
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.
I recently had a biopsy for diagnosis, which was done on the area with the worst LS symptoms. Based on the podcast discussion about applying steroids after adhesion lysis procedures to purposefully slow the healing I am not sure whether to apply the clobetasol to the biopsy site or wait for it to heal first. I got zero instructions on this from my Dr. Any advice?
Unfortunately this information needs to come from our provider as there are different types of biopsies and doctors like to use different aftercare instructions. I encourage you to reach back out to them and see what they say. Sorry I couldn’t help you more.
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.
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.
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.
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 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.
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, 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
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 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.
What if I have a burning sensation after the first application of the cream steroid? Do I continue? This happened with the estrogen cream
I don’t know a ton about estrogen but have heard from many in the community that they had to try several different types of estrogen before finding one that didn’t irritate them.
In the presentation Dr. Kraft said cream may have alcohol in it so she prefers the ointment or salve, Also estrogen premarin cream has alcohol in it. You can use the vaginally tablet for this 2x’s per week to avoid that burning from the cream.