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

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.

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 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!

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…very much appreciated!

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

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

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 🙏

Very informative! Thank you and God bless you.

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

Thank you Jill for sharing this important information.

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

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

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

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’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 😍

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

This is SO helpful. Many thanks.

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

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.

Thank you sooo very much, God bless you 💕

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

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.

This is such great information. Thank you!

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

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.

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

Thank you so much! I learned so much!

Wonderful info from a great doctor. Thanks 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.

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!

Thank you so so much!

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.

This is helpful thank you

Thank you so much 🙏🏻🙏🏻🙏🏻

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.

Thank you very much!

I wish there was a podcast like this for men.

Thank you dr your good explained I am from Nepal

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, thank you, thank you! ❤❤❤😘😘

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. ❤

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

Thank you!

Oh how I thank the both of you!!!🙄

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

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!

Very informative

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.

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!

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 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.

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

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 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!

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

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.

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

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)

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

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

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

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

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.

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?

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.

Can you post about instructions for men as it feels as they are very underrepresented thanks.

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

What do I do if some fusing has already happened?

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?

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.

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

Doctor told her she had LS. Gave her an rx for cream and told her to apply small amount twice a week, or she would get cancer. She came home crying and said she had a VD…..this is so frustrating and no one apparently wants to discuss it and what exactly should be done about and EXACTLY where it comes from and how one gets it!

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

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

Four doctors didn’t tell me this important thing 🤦🏼‍♀️

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

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.

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!

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?

Why not a nice warm sits bath on the throne, favourite beverage to sip and a great magazine to read for 10-15 minutes before application?

Hey guys awesome channel! Diagnosed with lichen by biopsy of the vaginal area which was worse than birth! Ugh so painful. So the oncologist dr was so nonchalent about it. First told me there was no way I had it because I am too young. (30) then came back with his student like "yeah you have it. Its no big deal." Really?! I had a cyst I had to get removed in the area because of hooding since in my 20's. No one diagnosed me until my 2nd pregnancy where I got lucky. Dr. Petraco knew exactly what it was but it took 15 years for someone to know. Anyways, right now I heard of the O SHOT with lichen. Looks like a great treatment but expensive

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

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

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

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.

I wonder if hrt can trigger it ?

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?

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.

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

Do I put ointment everywhere I feel I have an issue?

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

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 doctor said it is okay to take estradiol estrogen cream twice a week at the same time that I apply clobetasol. One is internal, one is external. At first I was confused, but she told me it was fine.