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.

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.

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

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

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

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

Thank you so much…very much appreciated!

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.

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 😍

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

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.

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!

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!

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

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.

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.

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

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.

Thank you Jill for sharing this important information.

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

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

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

This is SO helpful. Many thanks.

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

Very informative! Thank you and God bless you.

This is such great information. Thank you!

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

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 🙏

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.

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.

Wonderful info from a great doctor. Thanks so much.

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.

Thank you so much! I learned so much!

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.

I wish there was a podcast like this for men.

Thank you sooo very much, God bless you 💕

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.

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!

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. ❤

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!

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!

Thank you so so much!

This is helpful thank you

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!

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.

Thank you very much!

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

Thank you so much 🙏🏻🙏🏻🙏🏻

Oh how I thank the both of you!!!🙄

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.

Thank you dr your good explained I am from Nepal

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

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

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

Thank you!

♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️THANK YOU TWO!!! YES AMAZING!!

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.

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

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

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.

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

Very informative

Thank you dear Kathy and Dr. Jill. I have an aditional question. Does Dr. Jill cooperates or is in contact with any doctors in Europe, ideally Austria or Germany? Could you recommend a center of treating LS in those countries? I just got prediagnosed in a child wish center and they told me I would need a biopsy to confirm it and exclude the neoplasy. I’m prior to any treatment. I would like to perform a biopsy in a clinic where the doctors are as engaged as Dr. Jill here and know what they’re doing. Thank you once again for your channel.

Thank you so much for this! I went to my gyn and she told me I have lichen sclerosis but prescribed me hydrocortisone! My general doctor prescribed me clobetosol ointment! Question, so since mine is still pretty severe when I use the bathroom and I wipe some of the ointment comes off, am I allowed to reapply a little bit of ointment or none at all?

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!

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.

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)

What if you've already developed cancer from LS, had it removed and are currently precancerous, do you still recommend the continued use of steroids? My mother's doctor just recently had her stop using the steroids and she's experiencing another flare-up and gone back on estradiol/clobetasol.

Thank you for this information. I thought the skin was thinning and not thickening. I am considering laser therapy. What are your views on this?

Sorry hit a wrong button but those areas are worse slowly its getting better but again this happened in my off time. So i have just kept up once a day. But again thanks for the info

Thanks for the information. Unfortunately I have no bath hopefully a shower will do.

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

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

Great video! question does all this info also apply for men? like the steroid ointment and all that? will the skin go back to normal with this treatment?

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!

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.

I’m applying WAY too much. I started with a flare up last week and it was getting better but then went right back to swollen, fissures, cracked and red. The N.P. That I see for ls told me to use clob twice a day but didn’t tell me any other info on how to apply it, the quantity, etc. thank you so much for sharing this. Very informative. How do you guys deal with itching? I put on vagisil. My N.P. Said DO NOT use that but it’s the only thing that stops the itching. I have horrible itching the clob does not help the itching.

I’m new to all of this. Just diagnosed. Help!

I am having a hysterectomy next week for a grade 3 uterine prolapse…will the surgery disrupt the vulva skin and make my LS worse? I am really concerned about any trauma that can be caused just from the surgery.

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.

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?

Every area of what the Dr. Is speaking of I have! And when having sex it hurts and sore for days afterwards.

I was diagnosed with lichen sclerosis a year ago. My gynecologist gave me triamcinolone acetonide cream. I used it twice a day for two weeks and then once a day for another two weeks. It seemed to be working but then slowly started itching around my pubic hair area. I have been using it every night for the last month and it feels like it is under control. But as soon as I stop it, it starts itching again. Would clobetasol ointment be a better alternative?

I'm 75 and have had some urinary leakage ever since my uretha prolapse excision surgery in April. My urogyn now says it's part of my "anatomy" after the surgery and there's nothing I can do. Said Pelvic Floor therapist won't even help. I went for a second opinion a month ago from another urogyn and said I had a possible small area of LS on the perineum because it was lighter and thinner. She prescribed clobetasol 2x a week for first wk. and then every other day for a week and then 2x a wk. for maintenance. She said to put it on the burning perineum but it doesn't burn. Just have some irritation in the anal area and sometimes vulva/labia area. Said I needed a gynecologist for vulva discomfort. I went to a gynegologist and she agreed with urogyn's rx. Felt vulva discomfort was because of urine leakage and added 6x6 mm focal area of white epithelium at 5 o'clock of perineum, suspect LS, also more subtle LS changes extending laterally bilaterally. Prescribed clobetasol daily for a month and then every other day for month and then stop. Told me to put clobetasol on perineum and around anus. I have no idea if I have it and being diagnosed correctly and now I feel lost! Asked if it felt itchy and I said no. Only some irritation and sometimes a little soreness in vulva area. Neither mentioned thickening or skin or inflamation. Should I ask for biopsy?

What do I do if some fusing has already happened?

I have glaucoma and I worry about long term use of topical steroids. Is there an alternative?

Thank you for sharing information. Recently diagnosed. I’m so freaked out that my parts are going to fuse together!

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.

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?

I just found out I have lichens on the vagina and under my book on inside of elbows and behind my knee,I’ve been yusing to cortisone ointment about once a week iam 71 just wondering if I should use a lower maybe 1% every day or is the 5 % once a week good enough

Do you know of any pediatric specialists for LS? No one really talks about pediatric patients :( overwhelmed with a new diagnosis for my 5 year old

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

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

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

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.

My dr said to do pea size clones too and mix with Desitin pea size. What do you think?

Do the yeast infections n white dischrge go away once the treatment is started ?? I am having yeast infection foe more than a year and diagnosed wih LS today with a biopsy.

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

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.

have lichen planus vulvar and no md ever told me this information thank you have it now for years . i will ask for ointment they always give out the cream