How to use your Lichen Sclerosus steroid treatment with Dr. Jill Krapf

[@brookeoliver7321]

I was diagnosed with LS a week ago. I just started a six month treatment with clobetasol. I am using the ointment. The information on how to apply it was extremely helpful. I’m only two days into my treatment, and I am screwing it all up. Lol so now I know day three I’m gonna soak, pea size amount because I was using way too much, and rub it in, which I wasn’t doing. I just stumbled upon your podcast. And I appreciate it so much. Thank you for the work that you do.

[@LichenSclerosusPodcast]

I’m so happy you did. Sounds like you’re on the right track now. We’re starting our annual LSSN Holistic Healing Summit tomorrow. You should check it out. I think it will really help you answer a lot of questions. holistichealingsummit.live

[@yvonnekneeshaw2784]

Thank u. You have already answered some questions which I appreciate. so glad for this video. Detailed Question: If I am to use a pea size amount of ointment, how can one pea size amount be rubbed in over such a large area from anal, out some towards thigh, perineum and vagina. Or do I apply a pea size x 4 areas? Is there a video or diagram to show me? Don’t want to over apply. Hope u understand my question ❤️🇨🇦

[@pamstlgirl3461]

Amazing information, I feel really informed.

[@hilarydaimler1083]

I listened but don’t understand. Was just diagnosed and put cream on for first time today. Not sure if applied it right. Do u apply it to the area u shave or do u go more inside? Can I get more details I don’t understand and can’t afford to waist cream. Thx

[@zakiakassam5674]

@@LichenSclerosusPodcastI need advice for a friend pls ! She needs badly

[@aisling5849]

i can't over emphasize how watching this podcast has improved my LS status. i am in remission and have been itch free since week two, tearing stopped in week three. by five months my skin was pink and healthy. i have modified this method slightly, but not by much. go Kathy... and dr jill. thank you both so much.

[@LichenSclerosusPodcast]

Thank you! We're so happy to hear the program is working for you and you've been able to make it work for you. Sending you continued health. 🥰🤗

[@amirah9282]

Hi can i ask when did your skin return to normal. What did you use / how/ did you modify eating etc

[@jeanettelawrence293]

I couldn’t believe this in my feed….finally someone bringing this to the fore. I was diagnosed just post menopause. I finally found someone who treated this condition. I use a compound and I am seen twice yearly. I am a symptomatic. My dr will be retiring soon and there is no one treating LS in my area. The lack of doctors treating this is concerning. Thank you 🙏

[@LichenSclerosusPodcast]

Couldn't agree more. At LSSN it is our mission to create a continuous education course for providers to get trained in LS so that we have more to go to. I hope your Ls is managed and you are in a good place.

[@lynnbowen8842]

I have had this disease for around forty years and I'm glad to be there a different perspective on the disease and treatment

[@TameraEdwards]

Thank you for this information! I have had LS for at least 10 years. It’s a cruel condition.

[@LichenSclerosusPodcast]

You are so welcome!

[@ruthbarraza5536]

Thank you for getting Dr. Jill Krapf to speak to us. Thank you to Dr. Jill Krapf for taking the time to meet with you and answer all your great questions. I wish I lived in the D.C. area to be treated by her.

[@LichenSclerosusPodcast]

Me tooo!

[@Caroline_Homeschooler]

I commend you Kathy for conducting a wonderfully informative interview. You didn’t interrupt Dr.Krapf allowing her to impart all of the most current information. I realize this interview was 2 yrs. ago. Looking forward to checking out the Issupport website. Thank you so much!

[@jackiecarey5353]

This was so informative thank you so much , I was diagnosed three months ago and was given steroids to apply and told nothing about LS . I have learnt so much from this and will keep researching until I’m happy I know as much as I can x

[@ytballoon]

Thank you so much for this amazingly helpful information! Blessings to you both and everyone who suffers from this scary LS💜💜💜💜💜💜💜

[@heatherwalker5214]

I learned more in this video than I did in the numerous articles I’ve read! Thank you

[@LichenSclerosusPodcast]

Thank you!

[@Mebbe308]

This is marvellous information. My GP knows nothing about LS. I really appreciate this. Thanks so much.

[@LichenSclerosusPodcast]

You are so welcome. Be sure to check out our website for more great information! lssupportnetwork.org

[@sharondray254]

Thank you for so much for this 🙏🙏. I have also gotten misinformed and conflicting information from doctors for years, so this is very needed and helpful. And thank you for helping form a community, to realize we are not alone, as it has been very difficult and lonely dealing with this.

[@LichenSclerosusPodcast]

You are so welcome!

[@return2theuk]

We are in this together!

[@LisaMerrill-c4w]

This is so helpful! It makes me angry that my gynecologist didn't explain any of this.

[@mimicastellanos345]

This has been a very important and informative talk. I can't thank you enough. I was diagnosed this month and have a good chance of getting on top of it. I have so many questions!! I will be sticking around! Thank you so much.

[@LichenSclerosusPodcast]

Glad it was helpful!

[@lindalarkin4182]

Your comment of "making it a routine" is EXACTLY what my son said the April I was diagnosed. He didn't quite understand WHAT LS is, but he got that the treatment was to become part of my daily routine, at least for the first 3 months.

[@LichenSclerosusPodcast]

Sounds like a wise man. Yes, making it part of your routine means you will continue doing it, and since there is currently no cure, we need to maintain this condition for life.

[@BernalilloGirl]

I was diagnosed over 35 years ago, but thankfully have not had some of the more serious issues. I gave up many years ago on finding medical care as every doctor I saw didn't know anything about LS. I got a lot of bad advice, but thankfully have used the clob for many years to good effect in spite of doing it all wrong. I recently had one of my very infrequent outbreaks so decided to see what the latest thinking was all about. Wow, so many advancements since I last checked. And so many resources (like this) now available. Thanks for the great info. I will remedy my application process right away! And use the clob weekly instead of only when I have an itch.

[@LichenSclerosusPodcast]

I’m so happy the information was helpful. There’s definitely lots of exciting things happening in the LS space.

[@suratunnahar2398]

Hi I'm newly diagnosed with Ls I have been using steroid dermovate it's not helping, it's always burning and paining.. Please advise me what to do..

[@lovesakitas]

I stopped using the clobetasone ointment and my OBGYN became very concerned. Mine is Lichen Planus and she told me that by using the clobetasone ointment faithfully as prescribed, it helps prevent the LP from going up into the vaginal area even more (MY LP has symptoms very similar to LS. I tend to get LP “spots” everywhere on my body, including face, scalp, arms, waistline)

[@mommyof216]

@@lovesakitasyou can get this all over your body?

[@patriciapennell5505]

MIND. BLOWN. I think you just solved a problem for me that the docs I have been seeing for two years now have not been able to solve.

[@LichenSclerosusPodcast]

Awesome! So glad it was helpful. Be sure to checkout the Holistic Healing Summit. Dr. Krapf and 18 other experts will be talking about different aspects of treating the whole body when you have LS. We currently have close to 30 interactive sessions planned. Check out holistichealingsummit.live for more details.

[@JesusisLord716]

@@LichenSclerosusPodcast thank you! Will check it out!

[@doreencappello1530]

I was just diagnosed , I have been doing 2× daily for about 3 months. I see that I have it on my urethra and in that area. I find it hard to really rubbing it in there.

[@joannegolembeski4896]

@@doreencappello1530m

[@JessicaWilson-c5u]

I’m so glad you are doing this. I’ve watched 3 of your videos so far and it has made a world of difference in my knowledge and mental health 😍

[@LichenSclerosusPodcast]

I'm so glad!

[@lindaglaser7422]

At last there is good information about this. It’s hard to discuss this with physicians and/or family. I am 73 years old and have had LS since I was 18. I was first prescribed testosterone to rub on! It has been a struggle to ‘get it right’ by trial and error over the years. I now know when to apply Clobetasol by how the area feels. Sex was always a challenge. I ended up with lichen planus in my mouth that turned into tongue cancer. That was 4 years ago. One more year and I’ll be ‘cancer free.’ If you have changes, get a biopsy. I had 2/3 of my tongue removed. Thanks so much!

[@LichenSclerosusPodcast]

Hey Linda! Thank you for sharing. I'm so sorry you went through this. The science has been slow to catch up but we're determined to help as many people as we can. Be sure to follow @lichensclerosussupportnetwork for new content.

[@kormcgee7743]

💛

[@marymcsoley4071]

It sounds as if you’ve been through the wringer 🙁 but have come out the other side 🙂 I hope you don’t mind me asking, I have LS and planus in my vulva, also LP orally. I wonder if you had treatment for your mouth? Best wishes for the future ❤

[@donnawebb5382]

I thought I had LS for a long time at 38 years. You beat me!

[@abigailtimson8850]

I was diagnosed about a week ago, by my gynecologist, and then confirmed by my dermatologist. I was told to use clobestasol twice daily for 2 weeks. It is extremely painful and burns when I use it, I think perhaps after listening to this I am using it too often. I’m going to try baths and switching to once a day for a while to see if that helps! Thank you for all you do to help us newly diagnosed, navigate these unknown waters.

[@LichenSclerosusPodcast]

Sounds like a good plan. I encourage you to join our virtual meetups. We do an hour of education followed by sharing and q&A. You can get more information at lssupportnetwork.org/connect.

[@tcyva4845]

She did mention the ointment would burn less. So maybe switch to that. I used to use clobetasol and ask my dr for a different corticosteroid. I was prescribed Ultravate

[@gailconlon9507]

Soaking a very warm clothe in the area for several minutes gives me a lot of relief.

[@LichenSclerosusPodcast]

So glad to hear it!

[@italian-from-italy2371]

I've been mis-diagnosed for 6 years. My urologist treated me for Interstitial cystitis. Now 6 years into this, I find out I have LS. I'm waiting for the biopsy at the dermatologist. Wuaw ! I pray I don't have cancer. I wonder how much scarring is in there. I have been through hell with my pain and discomfort, this also includes the rectum. I knew something was not right. I'm thankful for this new urologist.

[@return2theuk]

big hug!!!

[@djgonpet]

Did the biopsy hurt? I am going to have it soon

[@rz3157]

I have had 3 vaginal biopsies. It's just a quick sting to numb and rest is fine. For healing, just pour warm water down there while urinating. It heals quickly.​@@djgonpet

[@heathersanchez5131]

Thank you so much for this podcast/ videos. I was diagnosed about 6 months ago, and it’s wild how little information is available.

[@LichenSclerosusPodcast]

You are so welcome! That's why we do what we do. Be sure to also follow our new channel @lichensclerosussupportnetwork

[@Lonniepsangel]

Even information from doctors!

[@simoneb4707]

I’ve been battling LS for about 10 years now. It’s so aggravating. I would use ointment for a few days and it will heal, now I just know to be in routine and rub for 90 seconds. I’m having a flare up and was seeking help on here.. glad I ran across this..thanks so much!

[@LichenSclerosusPodcast]

You got this! So happy we were able to help. I hope you're feeling better.

[@LichenSclerosusPodcast]

How are you doing today? Have you found what works for your body?

[@simoneb4707]

No the ointment still isn’t working😪Any other suggestions?

[@lichensclerosussupportnetwork]

@@simoneb4707 What are your symptoms and how do they change or not change with steroid use?

[@simoneb4707]

If I take an epsom salt bath every night and then apply the ointment. That’s when I get relief. I used to take Benadryl for itching, they aren’t working anymore either

[@gawgarin]

I wish there was a podcast like this for men.

[@LichenSclerosusPodcast]

Me too.

[@janiboma]

This was so very informative. Thank you for having this podcast that I just discovered tonight. Dr. Krapf is so informative for LS patients. Thank you so much.

[@LichenSclerosusPodcast]

You are very welcome! I’m glad it was informative. If you haven’t got your pass for the Holistic Healing Summit yet, I encourage you to get one today. Dr. Krapf will be leading an interactive session on May 9th and you’ll be able to ask her questions. holistichealingsummit.live

[@Madina-bi4kd]

Thank you! I have LS and I just learned so much from this video.

[@LichenSclerosusPodcast]

You are so welcome!

[@kellycoleman9817]

You both have helped me tremendously. Dr Krapf Hoping to get an appointment with you soon.

[@LichenSclerosusPodcast]

Awesome!

[@juliebarron21]

Thank you both so much. Just been diagnosed with LS. I had the biopsies done. Confirmed LS so awaiting medication. The itching is insane 🤕

[@NancyBortnick]

I have had for over ten years! I just learned so much from this podcast especially on application have not done this correctly,hoping this makes a difference!

[@jackieeick]

Thank you so much!!! So happy I found you both. So helpful and easy to understand. ❤❤

[@LichenSclerosusPodcast]

You are so welcome!

[@annhancock4509]

How do we know exactly where to apply the ointment? Is there any information/videos on exactly where to apply?

[@LichenSclerosusPodcast]

We cover it in this post. lssupportnetwork.org/drjill

[@lovesakitas]

I have been diagnosed by biopsy. I have LP many places on my body. On genital, the symptoms are very similar to LS. The diagnosis came 5 years ago. Yes, my life (eating habits, etc) revolve around autoimmunity and this disease, but keeping it in relative remission is worth the effort.

[@LichenSclerosusPodcast]

I'm not very familiar with LP but the treatment and management are not the same. We have members who have both. There's a lot more known about LP as far as from a scientific approach then LS. I would continue working with your provider to manage your condition and find a way to live life on your terms. 🥰🤗

[@fairelmcfadden9538]

What about using Nystatin and trmazinalone oitment together. I still have severe itching. What should I do?

[@Learningtolivebetter]

Unless you have a bacteria infection or yeast infection that went help. I do those sometimes to check. If I'm improved in 24 hours even a little bit ill continue with this till I'm better. If not, I'll go back to the clobetasol. Get a biopsy if you have not yet. They are not horrible & you'll get the right treatment. No one needs to be so itchy or inflamed

[@patcummings6950]

Great info and much needed. Will be starting clobetasol next week. Thanks so much.

[@anitasalaytah7235]

Do you have any knowledge on foods you shouldn’t eat if you have LS?

[@LichenSclerosusPodcast]

There is no LS diet. It's individual to your body. We have a comprehensive guide to LS and diet on our website at lssupportnetwork.org/lsdiet

[@MAwithMKloves2knit]

I am so happy to find this. I was diagnosed over 10 years ago and had no treatment for years. I've been to the emergency room for unexplained itching that started in the vagina and became my whole body. Given benedryl for treatment. In the past year I by fluke saw a dermatologist who gave me the ointment. No big directions just to use twice a day for no more than 10 days. Although better now, I have been unable to have sex for almost 10 years and for almost 10 years before then I suffered with burning, bleeding, days of pain, and more. I'm relieved that I am not crazy.

[@behoour]

I was just diagnosed a few months ago so this is all really new to. Thanks very much for this great information.

[@LichenSclerosusPodcast]

You're very welcome. I encourage you to watch the episode LS Basics. kzbin.info/www/bejne/rqrCiHxrbZJ_h6c

[@Lonniepsangel]

Thank you so much…very much appreciated!

[@dinahsmith9852]

Such great info & testimonials on this patch!!

[@LichenSclerosusPodcast]

Thanks so much!

[@Nonyabiz370]

Thank you for this information. I received an LS diagnosis this morning. I had not heard of this disorder (disease?) before. I’ll be using the steroid twice daily for three weeks, then going back to see where we’re at and whether the lump goes away at all (in addition to the other symptoms, I have a lump the size of an eraser on a pencil. ). I don’t know if the office prescribed an ointment or a cream, but will definitely follow up based on this incredibly important information. This is the most helpful information I’ve found today. Will having the steroid on my fingers hurt the skin on my fingers? Should gloves be worn, or will that impede absorption somehow? Very happy to have found your wonderful podcast. Very grateful to you both!

[@LichenSclerosusPodcast]

I’m so happy this was helpful for you. Applying the steroids with your fingers is ok. Just make sure to wash your hands after. Most people apply with their fingers. I’ve been doing it for 8 years with no issues. I encourage you to check out the Holistic Healing Summit. Dr. Krapf will be speaking May 9th and you’ll have the opportunity to ask her questions. You can find out more at holistichealingsummit.live

[@juliahutchinson4542]

I use gloves

[@lourdes4341]

Thank you Jill for sharing this important information.

[@annwoolley7686]

I have had LS for years and just had the worst flare up yet. I couldn't sleep , pain even when walking. The itch was driving me mad. It was agony wearing my uniform at work as I was so torn and raw down there. I have vowed to really stick to a regime to try prevent another flare up like that again. ❤

[@LichenSclerosusPodcast]

Sorry you're s-uffering like this Ann. Try to join our (W)holistic Healing Summit, May 8-13. We have a whole session on flare management. whhs.lssupportnetwork.org

[@phyllisaleshire4460]

Flare wasn't anything that you did or didn't do

[@ketybustamante9618]

I was diagnosed in October 2024. It took several doctors … until i got the one who listened my frustration for more than year and half complaining about this unstoppable burn. I am breast cancer patient, radiation and other treatments. Due to the hormonal estrogen breast cancer growth… severe dryness does not help this condition it all. I currently on clobetasol twice daily for two months. Will see my dermatologist mid feb. So far same burning pain

[@bonnykowaski]

Thank you, thank you, thank you! ❤❤❤😘😘

[@LichenSclerosusPodcast]

You are so welcome!

[@NikkiPumpkin31]

I was just diagnosed today after I got my biopsy results back. I’ve had LS since July 2022 it started during active Covid. Such severe suffering everyday since. I have it on vulva and where my episiotomy was. I tried the clob cream August 2022.I had bad reaction throat tight and hard to breathe and reaction down there but now someone sent me this video I’m happy and optimistic now.

[@LichenSclerosusPodcast]

Hey Nikki! I'm glad you found us. Other options exist if you can't tolerate steroids, such as topical calcineurin inhibitors. Don't give up hope.

[@Mebbe308]

This is SO helpful. Many thanks.

[@LichenSclerosusPodcast]

Glad it was helpful!

[@pammccellon]

My doctor said to use a moisturizer cream and mix with my Clob. Now after watching you I realize I’m not to use them together! Thank you for this video topic.

[@LichenSclerosusPodcast]

I'm so glad!

[@tangomcphearson74]

About application and sitz baths. Perhaps another application method would be: Take a very warm moist (not wet) clean wash cloth, lay it across your vulva and place a heating pad over the area for about 15 minutes, then remove those things and apply your Clob right away and rub in for 2 minutes.

[@LichenSclerosusPodcast]

Sounds like a plan!

[@Mickey-jn8hz]

I have had this for many years now and the tearing never stops. If I get constipated and have a hard time going, the skin actually bleeds…..is there something I can do to stop this tearing??????

[@salSwe]

Eat more salads as fiber to avoid constipation.

[@EvieSings]

Very informative! Thank you and God bless you.

[@LichenSclerosusPodcast]

You are so welcome!

[@ChristysPawlish]

This is such great information. Thank you!

[@LichenSclerosusPodcast]

Glad you enjoyed it!

[@cherylhaskell9830]

Durring recent flare-up, and absense of steroid cream, Burt's Bees' Hand Salve provided complete relief from itching and pain. Alrhough gynecologist instructed to use only water in region, Burt's Bees' Gentle Face Cleaner with aloe provided increased comfort and relief.

[@LichenSclerosusPodcast]

Glad you found something for symptom relief. You also need to manage the inflammation that is causing havoc under the surface. LS is progressive and you don't want the symptoms to be worse or progress when they come back.

[@RadicalWisdomAnnieG]

I do not live anywhere near you and haven’t been able to find any LS specialists in Ontario, Canada? Can you point me to specialists who are in east of the Toronto area? What do you do about severe scarring and fusing of the clitoral hood? Can the steroid ointment reverse the scarring (thick white skin) will the skin return to a healthy pink without the stickiness?

[@paigeeey7]

I need to watch this I've been using clob for a month I'm in absolutely agony with a flare up 😢

[@peggybreiner1124]

Thank you so much for this video. I was rather recently diagnosed. I am 68 years old. I do believe, in my case, it is autoimmune mediated, as I have systemic lupus as well. Really great info here - I evidently have not been applying properly. Now I know what to do. Currently have a bad case and it stings!

[@LichenSclerosusPodcast]

Thanks for sharing!

[@CherryJeany]

My biggest problems are…is the pea size amount for the entire area? When I squeeze the ointment and start rubbing, the pea size amount isn’t enough to make my way all around…lastly, do you put the ointment on the area around the vagina from the top to the bottom even if you don’t know if the entire area is afflicted. Essentially I am confused where I should be putting it exactly. Do you also rub it into the folds of the labia and around the hood of the clitoris?

[@chellebelle1970]

this is what i wanna know

[@LichenSclerosusPodcast]

You can got up to a finger tip amount but they don't recommend more then that. You want to use the least amount necessary. You don't need to put it on the hair bearing part unless you have symptoms there. I get itching on my mons pubis so I apply there. I do however apply on all the fleshy parts, labia minora, inside the labia minora, the clitoris, clitoral hood, and the perineum. Ideally you would have a great doctor that will tell you where to apply but if you're on your own you need to go with what feels right for you. Definitely apply where ever you have symptoms. I also recommend the labia minora, clitoral hood, and perineum as a preventative because these are LS's favorite places for anatomy changes. If you ever feel a burning sensation after applying the steroid, skip that area. That's probably your bodies way of saying you don't need medication there. I hope this helps clear it up.

[@chert2380]

Why doesn't my gyno have this treatment info? She gives me clobatesol but no details about how, when, how often to apply. I have to do my own research to be knowledgable about this. Very frustrating.

[@LichenSclerosusPodcast]

Hey Cher. I'm sorry you didn't get any guidance on your treatment. Unfortunately, a lot of doctors don't know. Check out this other interview with Dr. Krapf, talking about steroids in general. She discusses why doctors are not doing a good job of educating patients. Also, know that LSSN is working on changing this in the future. In the meantime, tell your provider about Lichen Sclerosus Support Network lssupportnetwork.org and give them our brochure, which details all this information. lssupportnetwork.org/brochure

[@stonerjackson9923]

What about fusing? Should I be concerned? Whar can fix or correct fusing? Thank you.

[@LichenSclerosusPodcast]

Fusing can be slowed down and halted by using the steroid correctly. I've stopped my fusing for over two years. Check out this resource. Architectural Changes & Lichen Sclerosus - lssupportnetwork.org/architectural-changes-lichen-sclerosus/

[@jennifercampbell1508]

Thank you so much! I learned so much!

[@LichenSclerosusPodcast]

You are so welcome!

[@SharonSmith-hh6bg]

Thank you sooo very much, God bless you 💕

[@LichenSclerosusPodcast]

You are so welcome

[@banjothesiamesecatisfunny]

I tried soaking for two weeks and it wasn't getting better. I finally stopped soaking and my flare up is getting better

[@LichenSclerosusPodcast]

So happy you found what worked for you!

[@lovesakitas]

When I stopped using the clobetasol, at my next OBGYN appointment, I had begun to lose vulvar definition to a much greater extent…it was alarming to see! So I started back faithfully on my maintenance dose, as prescribed. During the months of Jan-March my immunity issues increase. I would like pointers on how to manage my symptoms during this time. The best I have ever felt was the year (2020) I ate only protein shakes (Amy Meyers PaleoProtein which is AIP compliant, celery and salmon/tuna…also I ate veggies such as carrots/green beans)

[@LichenSclerosusPodcast]

Inflammation management is very important. I shared some resources with you in your other comment. If you're looking for more diet and lifestyle management, we have these resources. LS and Diet Comprehensive Guide lssupportnetwork.org/lichen-sclerosus-and-diet-comprehensive-guide/ How nutrition therapy could help manage your Lichen Sclerosus? kzbin.info/www/bejne/momxppKmqaajeaM Is the Autoimmune Protocol the Lichen Sclerosus Natural Treatment for You? kzbin.info/www/bejne/bJSudWZ_nauCrtk

[@Sports_editsshorts1064]

Try ayurvedic Indian medicine

[@Sports_editsshorts1064]

But this video s good

[@lovesakitas]

Thank you very much!

[@beahaven1642]

Recently diagnosed with all forms of lichen. Having horrible spasmotic pain at distal of vagina with atrophy. Have been on clob for 2 days. Greatful i wont becwasting time and medicine now that i know how to apply, how much , and when. I'm going back for biopsies in a few wreks. Had to ask for a topical prior to the anesthesia. Im in such pain just after the brush biopsy i cant imagine what id feel luke after these other biopsies. Why why why do we not help with pain management for this ?? Or for the spasms im exseperiencing? Im so stressed and full of anxiety waiting for appt and lab results. Its making my fibro and lupus flair which in turn seems to make interstevial cystytus and 2 forms of arthritis worse. My LP all over my body is flaring and now noticing oral problems as well. Please tell me what to say/do to get help from my Drs regarding things like anxiety, Spasms, pain. Seems like this would be paramount so 1 could rest which they say the lack thereof exacerbates our conditions

[@beahaven1642]

So sorry for all the typos here tears as I was typing 😢 I have another question about upcoming biopsies does the club interfere with the procedure or the results n how long off it before procedure if so

[@tammyerickson2146]

Oh how I thank the both of you!!!🙄

[@LichenSclerosusPodcast]

You are very welcome!

[@zendyk]

I don't have LS, but I have had clitoral adhesions since 2004. They are very severe now. How do I go about finding a doctor who can help me? Been to so many and they have all been clueless. One make gyno tried to retract the hood by hand, not understanding that it was stuck. He had no idea what was going on. I really need help. This pain keeps me up at night.

[@LichenSclerosusPodcast]

I encourage you to watch the interview I did with Dr. Racheal Rubin. I don't know where you are but there is hope. You can reach out to her and see if she has any recommendations. kzbin.info/www/bejne/fGaugGiCfL2FrpI

[@christinelillywhite777]

Please be careful, mine fused over, got infected and burst. Devastation.

[@wendimalevich2074]

my gyn did mona lisa on me, I was really great for like 10 years. now its back again !!

[@LichenSclerosusPodcast]

I hope this video helped you get relief.

[@Slm-mb7cq]

Where are we apply ing it? All over or only on the infected area? Im so confused, I've just been diagnosed but disnt get much i fo from my doctor about it

[@LichenSclerosusPodcast]

Check out this article for more details. lssupportnetwork.org/drjill

[@debbiemiranda7236]

A lot of gyns dont know much about LS, how can i find a dr that specializes in ls please?

[@LichenSclerosusPodcast]

We have a provider directory where you can search for doctors in your area. These doctors have been referred by other Lichen Sclerosus patients. You can search your area at lssupportnetwork.org/providers Instructions on how to use the site are at the top of the page. Be sure to check surrounding areas as well, especially nearby larger cities. I hope you find someone. If you don't, bookmark the page and check back frequently as we update the page as we get new referrals. Good luck!

[@Zoeismy1baby]

Kathy and Dr Jill, THANK YOU SO MUCH for posting this podcast. I was diagnosed with LS after going thru menopause. I'm lucky for that and for getting the correct treatment. However, the how often to apply and how much to use had been confusing. I would love to see Dr Jill for a good assessment and direction on what to apply, where and how. I'm four hours from DC so it is possible but a long trip. Does Dr Jill have a list of doctors in Virginia who specialize in LS? Thanks again!

[@LichenSclerosusPodcast]

I'm glad you were able to get a diagnosis. Dr. Krapf is worth the trip. She doesn't but we have a provider directory on our LSSN website. lssupport.net/providers All the doctors on this list were referred by people with LS. Good luck!

[@Zoeismy1baby]

@@LichenSclerosusPodcast Thanks for the reference!

[@sharmasitalasharma4479]

Thank you dr your good explained I am from Nepal

[@cocohed100]

Hello… quick question. Just starting my treatment and currently have open sores. When applying my ointment I do not think it is possible to rub the ointment in for that long as it is painful to touch right now. I am just dabbing it on… am I just wasting my medication. Also, I am not sure about soaking in the tub that long with open sores.

[@LichenSclerosusPodcast]

Hey! I hope your sores are better. To answer your questions, I say listen to your body. Do what you can until you can. As you heal, you'll be able to go longer. You don't want to cause more trauma to the area. Some have found zinc oxide helps their open sores heal in a day or two. You can find it in many diaper ointments. This may be something to try if you're finding them an issue.

[@enasmichael4985]

Thanks a lot nice information and very helpful

[@lisacarpenter1249]

This is helpful thank you

[@LichenSclerosusPodcast]

I'm so glad! 🥰🤗

[@katafrankova8836]

Thank you so so much!

[@LichenSclerosusPodcast]

You're welcome!

[@TazahBanda]

My daughter is 6years and was prescribed candiderm cream,its not helping.pliz can i use the same medication you are prescribing?

[@LichenSclerosusPodcast]

I would encourage you to speak to her provider about this. They may want to start her on a lower potency steroid like triamcinolone which will need to be used more often but will be more gentle on her skin.

[@juliequirke9581]

I don’t have a bath tub how can I soak? Your program was very informative. Thank you

[@LichenSclerosusPodcast]

Thank you! People get creative. 😂 Most people who want to soak get sitz baths. But I've heard people use kiddie pools and kitty litter boxes. One lady at our virtual meetups said she folds a wash cloth like a pad and wears it inside her underwear while she showers. When she's done washing up she took off the underwear and washed her vulva. That was how she soaked. I am a shower person and follow Dr. Krapf's procedure and am a year in remission. It can be done. Good luck!

[@Rev.Trelynn]

Hey, I just found this channel from googling how to apply w/Dr.Jill, I searched because a lady on a Facebook group said Dr.Jill did a video on proper application... Here is my question, When she Said the body considers this protein as non-self.. it immediately brought me back to pregnancy and having to get RX shots because since I'm O-BLOOD TYPEmy body would consider my pregnancy as an invasion and attack the ferus! Is anyone here O- and maybe that's a link to LS?!

[@LichenSclerosusPodcast]

I'm glad you found us. The body not recognizing them as self is an autoimmune response. There are so many autoimmune conditions. I don't know about the blood link but there is such a diversity in LS That I don't believe it is blood specific.

[@olwenlogue782]

I also am o- and had that injection.

[@lindadares6533]

I am treating ls but I still dont really know where to apply the ointment. I have an area in the inner labia that looks like a sore and itching. I cannot see any other area with thickening. I'm feeling lost.

[@LichenSclerosusPodcast]

We talk about where to apply in this blog post. lssupportnetwork.org/drjill The best person to ask is your provider. They should be able to look at you and give you individualized instructions.

[@christianaacree7896]

What do I do if some fusing has already happened?

[@hilarydaimler1083]

Can I see how to apply it? Not sure I applied it right with first dose? Thx

[@LichenSclerosusPodcast]

I encourage you to join one of our virtual meetup. Preferably our 2-4 PM ET session since we do education there and we go over how and where to apply it. You can get more info at lssupportnetwork.org/connect We also talk about it on our blog post on our website lssupportnetwork.org/how-to-apply-topical-steroid-treatment-for-lichen-sclerosus-correctly/

[@neonlizardcreativemarketin8225]

There is a product out there called Soak Bath Shorts that you can wear in the shower and soak the nether regions while you shower.

[@LichenSclerosusPodcast]

I’ve heard of those. I tell people about it at our virtual meetups.

[@anafontoura4492]

hi does this information apply to lichen plants?

[@Smokillo]

Wow I’m so glad I found his video, I really think I have LS even though I haven’t been formally diagnosed, I was given clobetasol but I didn’t know about the soaking and rubbing in for a while 😢 and my GYN warned me that it would dry out my skin so I didn’t use it for the amount of time she said! 😬 can I still do it now months later ? What kinda freaks me out is the narrowing of the vaginal opening, will clob application as you stated help this ? Tysm for this video btw

[@anitaroese9221]

Please know that you can carefully expand the vaginal opening. I did this over months by using vaginal dilators purchased on Amazon. Generous amounts of lubricant are necessary (recommend Astroglide). Be patient and careful. My vaginal opening is back to normal. I did sustain a large cut during intercourse and learned that lube is going to always be a must.

[@suecunningham5679]

@@anitaroese9221bless you Anita, this it what terrifies me the most, the tearing with intercourse. I’m currently using dilators and vagifem as post menopausal. Did you heal okay? x

[@lourdes4341]

I have another question regarding the Clobatesol ointment how many days in between should I avoid intimacy e.g. Sunday & Wednesday only concerned on how this steroid would affect my partner? Thank you so much!

[@lichensclerosussupportnetwork]

You can have sex on the same day, just wait about 30 minutes after applying and use plenty of lube. 😉

[@LichenSclerosusPodcast]

We just had this question asked at our partners meetup last night. As long as the ointment is dry it's safe. So waiting 20-30 minutes after application should be long enough. We'll be talking more about sexual health and LS throughout the week. Join us! lssupportnetwork.org/whs

[@lourdes4341]

​@@LichenSclerosusPodcast thank you for the information ❤

[@howardelgison5553]

I have had LS FOR OVER 30 YEARS. My interventions are using trial and error on your diet. I have given up milk, almonds, cinnamon. It keeps me from having breakdowns

[@LichenSclerosusPodcast]

I'm glad you found what worked for you. Please continue to monitor yourself as Ls is progressive.

[@DebbyCox-t9s]

I learned a lot about how I was using my ointment incorrectly.

[@LichenSclerosusPodcast]

So glad to hear it!

[@jenniferhull7372]

This ointment is out of stock where I live and has been for 6 or more weeks, will benovate rd work as that’s all they have?

[@LichenSclerosusPodcast]

If my research is correct, the medication you listed is also known as betamethasone, which has three different strengths. I encourage you to ask your medical provider or pharmacist which is closer to an ultra-potent steroid.

[@lenaparnell2417]

I’m 75 & have had LS for a few months. I have the steroid ointment. My problem is that the skin of my vulva is like tissue paper & tears very easily so I’m always in pain, especially when I urinate. My Gyno suggested buying a jar of Aquaphor because I’m so dry. I’ll pick both of them tomorrow & I hope it helps. This is miserable.

[@LichenSclerosusPodcast]

Sorry to hear you're struggling. Are you on topical estrogen?

[@Amber4]

If you urinate you can fill an old plastic ketchup squeeze bottle with water and poor it on your vulva while urinating. This will decrease the pain.

[@LS-sh8mv]

@@Amber4 Thank you so much!! This great tip has been very helpful for me to soothe the burning that occurs on the skin after urination. I purchased a “peri-bottle” for this purpose - fill it with water and use it while I urinate - very soothing and no more burning!

[@actuallobster7044]

God bless you

[@LichenSclerosusPodcast]

Thank you!

[@donnakesting2220]

Does it matter if you apply morning or evening as far as effectiveness,etc? There are nights that I feel too tired and tend to not do it. I’m better doing it in the morning. 43:11

[@Learningtolivebetter]

In my experience I do mornings unless I'm itching at night & need it

[@onceamusician5408]

I am one of the few sufferers of LS who is male. are there any significant differences in the condition in men? I am in crippling pain. I cannot work as i cant even sit up at a desk for long let alone walk far or stand for long. I don't think that increasing my pain meds is a good idea, and cold sets off the pain very very badly. so most days i am on my back with a hot wheat bag between my legs to dull the pain I am 64 next week and lost my job in march 2019 when the pain got more than i could work with IS this kind of pain standard for the condition? Is it more for men or am i an outlier in both sets as regards the chronic pain? (pain, and not just itching, I must add) my social life was not much but there is very little left. i cannot turn up to a person's house groaning in agony. Some of my closest friends can cope but not all and not relative strangers can anyone direct me to any sits dealing with LS in men specifically i did try soaking the afflicted area then rubbing in the steroid ointment. but this was a COLOSSAL mistake. I do not impugn your motive but rubbing the afflicted skin was total agony. different architecture down there, I guess :)

[@LichenSclerosusPodcast]

I'm so sorry you're going through this. Unfortunately I don't know much about penial LS but you can reach out to Jaclyn at The Lost Labia Chronicles. [e-mail] She has studied it and may have some resources for you. We plan on expanding to all areas of LS as we grow.

[@onceamusician5408]

@@LichenSclerosusPodcast thanks

[@karenpersson3995]

Do you put the ointment directly on the clitoris? I seem to have itching there but the rest of the LS seems to be close to remission.

[@LichenSclerosusPodcast]

Yes. I put it on the hood, in the hood, and rub it on the clitoris.

[@skyemomc3108]

I find it nearly impossible to actually SEE the lesions on my vulva even with the use of a hand mirror, so it’s hard to judge what’s changing. I have been diagnosed for 25 years and treated with a few different topical steroids. But I seem to have a lot of burning from urinating. Should I try a barrier ointment like Vaseline? As a result of the flares I have I have gone off sex since I was diagnosed.

[@bjcraftcorner]

Question - when did the thinking of use Dermovate when required go to use it twice a week for maintenance?

[@LichenSclerosusPodcast]

There was a study done in Australia that followed 507 women with vulvar LS for 6 1/2 years. They found out that none of the ones who continuously correctly used their steroid developed vulvar cancer. Of the ones in the group who did not, 7 or 4.7% developed VIN or vulvar cancer. Although this was not what the study was trying to discover, it provided evidence that continuous treatment can reduce the advancement of vulvar cancer. They are currently working on doing a study in the UK to determine whether maintenance or use as needed is more effective. I just released an interview with one of the researchers. You can see it at kzbin.info/www/bejne/j6q2ZJaMl7uCeZI

[@sabree6188]

Wow this has really changed things for me, my GP advise me to put epimax cream on then clobetasol on top but it didn’t feel like it was working. From watching this video I’ve now learnt that clearly I’ve been advised wrong!

[@MsJazzoo7]

I just had my biopsy nd needs to wait 3weeks fr results. can't use any creams or ointment untill I get results nd to give biopsy area time to heal before using any treatment. I don't have a bath but hve used the shower hose directly on the effected area to improvise fr the bath soak.very good info, hve never google as I did not know what it was.thanks

[@LichenSclerosusPodcast]

🤞🏽 your biopsy comes back as something curable. If it does turn out to be LS please know you are not alone and we have many resources for you at lssupportnetwork.org. 🥰🤗

[@celiagalorenzo4585]

How can I find a doctor to treat LS? I live right outside of NYC and I've spent hours and hours looking for a doctor with expertise in LS. I was misdiagnosed three years ago, been dealing with the symptoms all this time. Any suggestions

[@LichenSclerosusPodcast]

We have a provider directory where you can search for doctors in your area. These doctors have been referred by other Lichen Sclerosus patients. You can search your area at lssupportnetwork.org/providers Instructions on how to use the site are at the top of the page. Be sure to check surrounding areas as well, especially nearby larger cities. I hope you find someone. If you don't, bookmark the page and check back frequently as we update the page as we get new referrals. Good luck!

[@Rubyroo7yr]

I was diagnosed also! I freaked out. I have fusing down there. Where do i apply the cream? Do i put it on my inner labia or clitorous? Ive only used on outer labia. Please help! I'm so confused!

[@LichenSclerosusPodcast]

We discuss this in our accompanying blog post lssupportnetwork.org/drjill I hope you're doing well.

[@noname5905]

One of my challenge is that when the ointment sits in my skin it creates like a build up on my skin which causes more itching. Have you heard anyone describe something similar? Any tips on avoiding the buildup? Also if you only apply once a day, do you shower one or twice a day? Appreciate your channel, thanks for the info!

[@LichenSclerosusPodcast]

You only need a very small amount and you should be rubbing it in thoroughly so there is no build-up. You don't need to shower after you apply it. You want to soak or shower before to soften the skin. Hope this helps. 🤗🥰

[@Amber4]

It could be that your allergic or sensitive to the preservative in the ointment. Other or less strong corticosteroïd ointments have different preservatives. So maybe you can ask for a different creme?

[@janfellowspolecat]

I’m from the U. K. just new to this LS, very interesting listening this program, I haven’t had any information reference all of this. What is the ointment called please, wondering if I’m able to get this in England. Thank you

[@LichenSclerosusPodcast]

I believe Clobetasol is called Dermovate in the UK.

[@karenblythe7486]

Yes I'm from the UK you can get it it's called dermovate

[@jewelsfielding9047]

Yes you can it’s called ClobaDerm and you can get a big tub of Hydromol for washing and moisturising ❤

[@annemariestinton9048]

I'm in the UK there is a great oil made by a gynaecologist from London that I buy for use when I'm not in a bad inflammation .it's on line it's called Naydaya it's worth a try