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How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

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.

Dr. Jill Krapf is a researcher and LS specialist. By giving a plain step by step guide on how to use steroids treatment for lichen sclerosus, she has changed lives.

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.

With LS our skin gets flooded with inflammation much like a building with a busted water pipe gets flooded with water.

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.

With LS our skin tears much like a sidewalk cracks because it doesn't have any elasticity.

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.

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.

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. 

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.

Soak your vulvar just like you would steam your face before a facial.

“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.

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!

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80 Comments

  • Susan

    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

    • Hilary Daimler

      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

        • Annie

          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.

      • Mary

        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.

  • Jill

    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.

  • Maaike

    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.

    • Jane

      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

  • Dianne

    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

  • Tereza

    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.

  • Shanell

    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

  • Anne Lloyd

    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!

  • Hazel Garner

    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 .

  • E

    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. 🥰🤗

  • Carla

    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.

      • Cat

        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.

  • Kate

    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. 🤔

      • Lia

        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.

  • Carla

    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.

  • Jordyn Babb

    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.

  • Lisa

    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.

  • Lili

    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.

  • Sarah

    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.

  • D

    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!

  • Sally

    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.

  • Sarah

    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’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.

  • Abby

    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.

  • Deb

    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!

    • 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/

    • Franci

      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 !!! 💕

  • Melissa

    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.

  • Franci

    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.

  • Eva Ellin

    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!

  • Franci

    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 !!

      • 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.

  • Rk

    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?

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