7 Ways To Stop Vulvar Itch From Lichen Sclerosus

[@angym2152]

I am so glad to see I'm not alone!! This itch is MISERABLE.

[@marlainesteuart9911]

I am like you! for the first 5 - 15 seconds it feels good to scratch ! then comes the pain. I was diagnosed about a dozen years ago and there was no info out there. Doctors didn't know what it was. it took a young dr fresh out of school to identify it and he called it lichen planus. have had years of remissioin by focussing on diet control. I lost that strict control on food and drink and I am having the worse flareup in 5 years. so pleased to see this podcast and know i am not alone!!

[@AnaMariaMenendezBeachblee]

I am so happy I found you I was diagnosed 2 weeks ago been misdiagnosed prior The pain,burning and itching is uncontrollable

[@LichenSclerosusPodcast]

Hi Ana!!! I'm so glad you found us too. 🤞🏽 You find the treatment that works for you and gets you on the road to healthy. 🤗

[@juleszey]

Ahhhh... “The Itch” Commando should just be my middle name. Thank you as usual for all you have been doing to bring awareness and support.

[@LichenSclerosusPodcast]

You know it girlfriend! When I wasn't working my daughter would sleep with me a lot so I couldn't go commando as much as I would have liked. LOL Thank you for all you do as well. #LSWarriors #LSSisters

[@karenboouk531]

Glad I found you I've had this for about 14yrs it's driving me nuts itch more so at nights then the burning I can't seem to stop it thank you for the advise

[@judymarasco4231]

Itch is the gift that just keeps on giving

[@lizolivas5212]

Yes, yes, yes I do have the itch. When you were describing your itch you were describing me exactly. I’ve even used a brush in desperation. I love this episode because it ALL applies to my experience with LS. So happy I found you. I absolutely will send you my diagnosis story. For me it is absolutely impossible not to give in to the scratching, believe me I have tried everything no too, but the itching is too intense. And yes it is pleasurable at first and then it’s just painful. And the laying down and middle of the night itch are also in my repertoire. For me it was agony until I got my diagnosis and my ointment… what a relief, thank you Kathy.

[@LichenSclerosusPodcast]

Aww I'm so glad this resonated with you. you ae definitely not alone. I hope you get some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@bsutter6097]

Kathy thank you so much! Sometimes I feel my leg shaking while scratching! Then the pain starts! I have been getting notifications about the group chat for months and I always feel scared to jump on. But I am going to really try this weekend. It would be great to hear from people going through similar situations and feel less alone.

[@LichenSclerosusPodcast]

I hope to see you on Saturday. We're very welcoming. You won't regret it. 🥰🤗

[@11nica5]

I get that too, it my left leg which is the same side that’s affected. My itch is mostly on the left labia. I get more of a tingle that runs down my leg.

[@lilly-maebailey8037]

you described exactly how it is for me, even that few seconds of a really nice feeling!

[@LichenSclerosusPodcast]

Right?! I’m glad it resonated with you.

[@eightyninetreasure]

It’s good to hear a laugh, because I learned yesterday at an appointment I have it. I noticed the discoloration and itching, so it makes sense. I sleep with my legs together and thought it was a yeast infection. I sleep on my stomach when it acts up, and have a small disc size ice pack for those moments. The best feeling is putting the fan on and ahhh sweet relief.

[@LichenSclerosusPodcast]

Sorry to hear you have it. You are right. It feels divine when you're laying there commando and the air is hitting you just right. Definitely a great way to fall asleep. 😁

[@11nica5]

OMG, it’s been nearly 5 years looking for answers. I’ve been to multiple doctors; OBGYN, Dermatologist even a holistic gyno. They were all clueless. I was prescribed Clobetasol but it only calms the itch. I’m totally self diagnosing right now but I’m a 💯 sure it’s LS. I’m so relieved!! Also, you’re not alone. I’ve never experienced such orgasmic relief from scratching. It’s the most intense sensation; which I’ll be honest. I would slightly miss the euphoric sensation but I’m so done with the itching. Thank you so much for this vid!

[@LichenSclerosusPodcast]

I hope you got some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@renaed00bdavis86]

I never had the itch until I started using the barrier creams and ointments

[@LichenSclerosusPodcast]

Sorry to hear that. There might be something in your creams that you're allergic to. We have an article on contact dermatitis. Lichen Sclerosus Or Vulvar Dermatitis - lssupportnetwork.org/lichen-sclerosus-or-vulvar-dermatitis/

[@janinelargent9220]

Similar for me. I had occasional itch at night but no big deal. I went to gyno because l was concerned about the white patches. He gave me clobetasol, I started using it and immediately if I didn't use it at night I was on fire and just wanted to dig. I had to restrain myself as I didn't want to tear open my flesh. Now I'm dependent on steroid cream twice daily

[@desertrosedia8812]

No ur not the only one ,sometimes i have to scratch but the pain after omg

[@LichenSclerosusPodcast]

Right!

[@nishthazinan9797]

Just now came back from scratching 😇😇😂😂 listening your video clip with ice pack 🌹

[@LichenSclerosusPodcast]

🤣🤣🤣🤣🤗

[@misfitallday]

Thank you for sharing.. Im actually experiencing the same disease..Funny thing that it took for me to get admitted to hospital bf they detected until after 8 months after being isolated not knowing what was going on w/ my beautiful skin like a nightmare .. Im schedule for UV treatment this month as well as on dox… 100 mg 😢… Thank you for sharing ❤ its feel great knowing I wasnt alone going thur this ordeal..

[@danae7054]

The intensity of the itch is almost indescribable! I am soooo pleased to hear about your "holy panties"! I thought i was the only one with holy undies as a result of trying to ease an impossible itch. And, yes, the scratching does feel good...weird but true!

[@angym2152]

According to the stories my mom told me from the day I was born, I came OUT with it. They had no idea what it was so I was diagnosed with infantago, incessant "yeast infections" . Mom said I came out with my vaginal hole closing up and she had to take a q tip everyday with Vaseline and rub around the hole to keep it open. (this was 1967). The next BIG episode was when I was 6. They said I had infantago down there. Next one at 16. Was told I had herpes, even though they took the herpe test 3xs and it came out negative but they had no answer. I was just officially diagnosed two years ago but damage has been done, my inner lips have fused to the others. I GET PLEASURE FROM SCRATCHING!!! LOL

[@LichenSclerosusPodcast]

Wow! So sorry the medical field has let you down so bad. Are you in remission now?

[@cherilcooper289]

Before I got my clobetasol..I used carmax lip ointment..that seemed to cool it down alot.

[@Peanutsmom3007]

I only had one finger left up! My whole life consists of a mountain of razor blades underneath me at all times!

[@LichenSclerosusPodcast]

😆I would say you definitely have the itch. 😂😂😂 so sorry to hear that. Come to one of my meetups and let’s see if we can figure out how to help you. The next one is Saturday from 7-9 PM EST. Then February 6, 2-4 PM EST.

[@sunuman4454]

After the pleasure of the itch........comes the fire. Lol. Xxxxx

[@LichenSclerosusPodcast]

Talk about it sister! Just as it’s getting good here comes the BURN! Thank you for listening. 🤗

[@sunuman4454]

@@LichenSclerosusPodcast it’s so good we can laugh. 😂

[@LichenSclerosusPodcast]

We have to girlfriend. I refuse to go through life miserable. 😁

[@LichenSclerosusPodcast]

Yes she be wanting to be noticed and she likes to party! 😂😂😂

[@b.bailey8244]

I'm sorry for this stupid Q but what does "go commando" mean? If it means wear skirts or loose jockey shorts and no undies, I've been doing that for years. No one told me I had lichen. I finally asked for some older health records and it's been on my chart since 2014! - and NOBODY TOLD ME. Ten yrs I could've been treating it. But the steroids... they have wreaked havoc with my body. Now I can't use steroids. The flare ups were horrible and it only calmed the itch for half a day and I was using too much. What can I do now? I hope there are others like me who've gotten relief without steroids. I have tried many things including the steroids and my body became addicted to the steroids. I won't go into the problems THAT caused. My lichen is also inside the vag opening so I itch INSIDE as well as all the other obvious places. Add to that, the fungal issues to add insult to injury. I am so miserable and read that this leads to vulvar cancer. Ugh. Already had cervical 20 yrs back. I haven't had sex in over 18 yrs, probably done forever. The whole thing makes me so damn sad and ashamed.

[@lisasindelar2763]

Thanks so much for all your info, you have helped me so much!

[@LichenSclerosusPodcast]

You are so welcome!

[@lenaparnell2417]

I only have the itch during the day & never during the night, thank God.

[@sandydixon9020]

I have really bad itch and a lot of pain and burning in parts! Very painful. I sleep nude! With my legs apart, I am so vey sick of this.It hurts so 😢much.

[@LichenSclerosusPodcast]

I'm so sorry you are suffering. How are you treating?

[@sandydixon9020]

I am on taro-clobetasol, and Elidel cream the first one helped for the first couple weeks. But now I am just miserable, in so much pain and itch! It hurts to sit down, I just wear Pj’s! I lay on my bed on my stomach. I don’t get much sleep, I take Tylenol extra strength but it doesn’t touch it! This is like living in HELL!

[@LichenSclerosusPodcast]

How often are you using the taro-clobetasol? Were you biopsy diagnosed?

[@desertrosedia8812]

I feel ur pain

[@thepeach5421]

All fingers down. Itch after sex is a very subtle description, I would say "Forest Fire" after sex.

[@LichenSclerosusPodcast]

🤣🤣🤣 Unfortunately it can be so bad you have to make a decision if it's worth it.

[@selove-sc8zx]

castor oil has helped me a lot. i load it on then put plastic wrap over top. I don't have a diagnosis but I am 99% sure this is what I've dealt with for decades

[@cindyzak1897]

Caster oil yes plastic is toxic. Use cotton pad

[@royalblue9165]

Please get a diagnosis. Because if you do have this condition you will need a treatment. Some women get vulvar cancer from LS.

[@shelleywinters6763]

I suspect your 7 suggestions don't work for me. I haven't used epsom salts, but I have used emu oil, my doctor said not to use that, she had another oil which seemed more soothing, but it wasn't available in this country, any way all oils eventually aggravate the situation. I started using oil because I was getting sore at work and the skin was tearing, turned out the oil was causing the aggravation! My steriod ointment works until it doesn't and anyway the itch never goes no matter what I do. The only thing that works is, don't touch it when it's not actively itching, as soon as i touch it i realise it's itchy and that can make me scratch if I'm not careful. I push in with my finger, probably good idea to cut the nails to a hub as well so you can't tear yourself. I don't scratch I dig or push the area that is itchy, so i don't damage the skin. My doctor told me estrogen helps make the skin healthier, hormone treatment for menopaus, I found the cream for that was aggravating and I heard the hormones are bad for you. Perhaps you have something about estrogen treatment helping. Anti itch soaps I haven't looked into, but again i suspect it won't work for me, but I'll look into it. Oh yeah, I have a pretty stress free life, only work once a week, not money troubles, no releationship troubles and I did a keto diet for 4 months and that didn't change the itch problem either. What absolutely works though is not wearing clothes and when it's really bad put an ice pack on it, wrapped in a towel of course, don't wanna get frost bite down there LOL. Sorry some people are being mean about your style, I like what your doing. Thanks

[@LichenSclerosusPodcast]

Thank you again for the support! Can I ask if you were diagnosed by biopsy? I ask because how you describe your symptoms sounds like lichen simplex chronicus, which mimics LS but is curable. It's not caused by a condition. It's an itch-scratch cycle that the mind gets into. If you didn't have a biopsy, it may be a good idea to get a second opinion and possibly get one. I'd hate for you to be dealing with this for the rest of your life when you can be cured. Talking about ice packs, have you heard of Private Packs? They're hot/cold packs shaped like menstrual pads. They come with sleeves to help them stay in place and provide barrier protection. If you haven't, here's the link, and you get 15% off the first order. privatepacks.com/lostlabiachronicles Hope you get relief soon.

[@janinelargent9220]

I agree dont touch or you'll wake the fire ants

[@shelleywinters6763]

@@LichenSclerosusPodcast yes i had a biopsy. no didn't know about the priavet packs. Sounds great. thanks

[@FinalCurtainCall]

I haven't been officially diagnosed but I'm pretty sure LS is what I have. I've been tested for everything twice including bv and yeast in April. Everything came back negative. Again in Oct. Negative. I had bad itching down there and I tried not to eff with it down there but omfg I grabbed a qtip and dabbed at the irritated area and I guess the next morning...boom 🤯 I had developed irritation so bad, that it developed a red and white sore. It now burns when I pee. I been experiencing this for a year but gradually. The sores are the first ever to appear this week. This is so embarrassing and irritating. I can't wait until the Gynco office open tomorrow since they can't figure it out but I'll tell them what I suspect what it may be and even ask for a biopsy. Until then, I've been using home remedies. Ps Thank you for these amazing tips

[@cevichelaguna3242]

I was just told this is likely what I have as well. Just a few days ago. No clue what it was at first. Just visual, no biopsy since in clearly in the thick of a flare. My small town in BC is so low on doctors, I had to go to emergency. Twice. No STDs, tested positive for yeast as well, and only just got my steroid cream today. It's been rough. I've had itching in the night big time as mentioned here, and that was about it other than razor sensitive skin when I shaved but luckily I moisturized heavy to begin with. Edit to add: until the past week when I also got sores, red and white as yourself, insane inflammation, pain etc etc. Thus bringing me to emerge. I feel you big time. It's a lot to take in. I hope you get the answers you need, to keep things under control :) We got this.

[@LichenSclerosusPodcast]

Were you able to get a biopsy? How are you? I hope you get some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@LichenSclerosusPodcast]

I hope you got some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@jackiecollins7795]

I wear men’s white cotton briefs to bed because they are thicker so I can scratch without damaging my good underwear.

[@LichenSclerosusPodcast]

Great idea! I've already ruined all of mine. 🤣🤣🤣 Although I don't have itching anymore so I won't ruin my new ones.

[@65adela]

I love commando style except in winter time

[@LichenSclerosusPodcast]

😂😂😂😂 I can see how that could get uncomfortable. 🥰🤗

[@graceoribhabor7572]

Four years ago my parts were pink, robust and functional. Now, instead of having a flower in full bloom, I have an almost smooth plain.

[@LichenSclerosusPodcast]

So sorry! I know I was shocked to learn that was even a possibility. Are you under someone's care? Have you stopped the fusing process? Let me know if there's anyway I can help. Have you signed up for the virtual meetups yet? I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on May 1st. You can signup at lssupport.net/connect. Lots of women find it helpful to connect with women who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. I hope to see you at a meetup but if not I look forward to hearing from you again soon.

[@AnaMartinez-ed1uw]

did you get a biopsy to get diagnosed?

[@LichenSclerosusPodcast]

No I was diagnosed from clinical exam.

[@christineb1933]

I just had a biopsy to determine if it is LS or psoriasis I will know next week for sure but been dealing with the itch for a while now as I was nervous about using the various medications so avoided getting help. I have been calming the itch down by commando all the time I am home, keeping things cool helps for me. When the itch becomes so bad that I feel physically nauseous I take a damp washcloth that I keep in the freezer and apply that for a couple of minutes. Today I will try the clobetasol for the first time. My guess is that this is LS and I think that we sufferers will need several help tools to cope with this awful condition.

[@ruthretzke8785]

Have suffered from this autoimmune disease for years. Have had surgeries to remove scar tissues, but no matter what Rx. is used, I continue to suffer with it. Next stop, Mass. Gen. Hosp.!! I am afraid to think thay after all these years, it may have advanced into a cancerous condition.

[@graveart1105]

Yeah, me too. If my LS hasn’t improved in 8 weeks I’ll have a biopsy.

[@mmabathopatience6294]

❤yoh loved this topic I thought this was only happening to me tried everything and nothing is helping me..the doctor said it's yeast infections do he prescribed antibiotics I only take one a week to and advised to cut caffeine and alcohol will send feed back after two weeks to see how this goes

[@LichenSclerosusPodcast]

I'm glad this was helpful. If he said it was a yeast infection, which is definitely possible, he should have prescribed an antifungal. You need to use it as prescribed because if you don't kill it completely off, it will regrow, and you will be back in the same situation. Alcohol and other sugary drinks promote yeast, so curbing them may help. Let us know how you make out.

[@jenniferdavis6608]

Ugh, my stress is so bad because of 2 special needs kids, mainly because the older 1 is violent and beats the heck pout of me everyday. Yoga and that type stuff just doesn't help.

[@FragrantGain58]

Ive tried itch relief cream that seems to stop the itch i was given the cream for itchy legs as i suffered with leg ulcers and they get very dry and itchy so i tried it down there it seems to do the trick i know what u mean the first scratch its orgasmic lol [EDIT] when i read my comment i noticed it didnt sound very nice (orga**mic ) what i meant was the itch is so horrible like when you got a itch you cant reach and you try everything to get that scratch and when you get it is bliss didnt mean anything nasty or making fun of it because its the worst worst itch of all

[@LichenSclerosusPodcast]

I hope you got some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@FragrantGain58]

@@LichenSclerosusPodcast Ive now been to the dr as i had appointment for a smear and she said this is quiet common and has given me this cream which i have to inject inside every night for 2wks and then if every thing goes ok twice a wk only just started so early stages will come back and let know how it goes

[@lichensclerosussupportnetwork]

@@FragrantGain58 Are you talking about menopause or LS? They are two different conditions. LS is an external skin condition that is treated using topical medications. Menopause can cause atrophy in the vagina, which can be treated with injectable estrogen. Lichen Planus can also affect the vagina, but I don't know about all its treatment options.

[@FragrantGain58]

@@lichensclerosussupportnetwork Didnt mean to be so rude sorry for my remarks also

[@agiejones7651]

Every single one, yes! The most Savage itch! Crazy!!!

[@LichenSclerosusPodcast]

I hope your itch is better. 🥰🤗

[@Pimienta0908]

Video starts at 10.57 min

[@deboraheischen5783]

what about using estragon cream?

[@LichenSclerosusPodcast]

Estrogen cream helps the skin when it's affected with atrophy. Low estrogen can cause atrophy and trigger itching in LS which makes it a good combination with steroids for some people.

[@deboraheischen5783]

@@LichenSclerosusPodcast thank you, yes im experiencing atropy! 1 Labia minor has disappeared and the other almost gone...need to find a doctor to help me.

[@LichenSclerosusPodcast]

Labial resorption unfortunately is a symptom of LS. They're different from atrophy. Atrophy can cause dryness and loss of tissue structure. It can be reversed with estrogen cream. Resorption can not be reversed. Atrophy most commonly happens in the vagina and can affect the vestibule. Have you checked out the searchable provider directory at lssupport.net/providers? All the doctors on the list have been referred by patients. Hope you find someone in your area.

[@sarina965]

The scratching is herroine. 😢

[@LichenSclerosusPodcast]

I hope you get some relief. We have a new blog post with even more tips. 10 Tips For Managing Itch With Lichen Sclerosus - lssupportnetwork.org/10-tips-for-managing-itch-with-lichen-sclerosus/ Proper treatment has been my friend. I am currently two years symptom free and three years itch free. How to use your steroid correctly with Dr. Jill Krapf - kzbin.info/www/bejne/fJXadnaud698eKs or lssupportnetwork.org/drjill

[@judymarasco4231]

I am extremely allergic to lidocaine

[@LichenSclerosusPodcast]

Sorry to hear that.

[@dawnruegsegger2362]

Hi I'm trying to text you but don't know how lol.i just wanted to say thank you for your help and info got a double whammy I just found out I have diabetes in the next 6 months I just found out I have lichen sclerosus I'm a little over my head.know help reading thank you for the podcast.

[@LichenSclerosusPodcast]

So sorry you're going through this Dawn. I hope the LS is at least an easy fix. Proper steroid use is essential. I encourage you to watch a recent interview I did with Dr. Jill Krapf on steroid therapy. I look forward to speaking with you on Saturday at the meetup. kzbin.info/www/bejne/m3Smaaatj9Z0l8U

[@marymcsoley4071]

The ITCH is insane 💥💥💥I really hate it. It’s miserable 😭

[@LichenSclerosusPodcast]

I hope you can kick Persistent Patty to the curb soon. I've been symptom-free for over 2 years now. I follow the steroid procedure discussed in this episode. kzbin.info/www/bejne/fJXadnaud698eKs&lc=Ugz8F0yqrC8EPv0zwUt4AaABAg

[@marymcsoley4071]

@@LichenSclerosusPodcastthank you ❤

[@bettyworkman5335]

I enjoyed the video but my issue is when I started keto this is when it started for me. So if you know about keto you know it's very low carbs.

[@LichenSclerosusPodcast]

There are so many possible triggers. This is an area that needs more research. How are you now?

[@shelleywinters6763]

Hey appreciate your vlogs. Like you I couldn't find any information on this condition and the doctors are not looking into new research or cures, it makes you feel like it's hopeless and for a time I gave up treating it, 'cause even with the treatment the itch would still be there. I decided it's itchy because the skin is in heal mode. You know when you cut yourself and the skin mends back, that itches, I think it's the same itch. I don't have flare ups, it's always itchy not matter what I'm doing. When I go to the toilet I notice it because I have to wipe myself dry, then I know it's itchy. It's not something that can be ignorred either, it's like the itch someone gets when they have a plaster cast on. You see that on comedy shows where someone gives them a stick to get to the itch and give it a good scratch. I heard that itchiness is a very mild pain and I think scratching relseases endorphines to help us stamp out the pain. Not sure I agree with that, usually when your a bit itchy you scratch it and the itch goes away. This itch is deep under the skin, it's an itch that doesn't go away, it intensifies. I learned from painful experience that scratching is a BAD idea and not worth the pleasure from relief, temporary very temporary relief. The first time I did it I had to go to hospital, I messed myself up so bad, I damaged myself as if I had 2nd degree burns. Now I don't scratch any more I push and dig my finger deep with out moving side to side, not a scratch a push and dig so the skin doesn't get damaged but it still releases the endorphins or whatever temporary relief, without the damage. One remedy a doctor suggested is to put an icepack on it, she was right it does get rid of the itch. I find if I don't wear clothes I get less aggravated. I have to wear trousers that are 2 sizes too big. I'm supposed to wear cotton underwear, but I can't find such a thing. Anyway it's better to wear no clothes and I agree air flow is important. I would suggest the icepack with a towel wrapped around it, it really works. Since your vlog I started doing the treatment again, but I think my cream is strong, so I did it every day for a week then it got itchy again and I stopped because you said too much can also cause itching. I really needed someone to chat with about this condition, because I think it's quite rare and I needed support with living with it and also to know if there was anything being done to help in the future and just know more about it. They don't tell you much the doctors, I needed more info. What you found out has helped me a lot. So thanks. If I can help others, not that I look after myself much, I will try.

[@LichenSclerosusPodcast]

Hey Shelley! I'm glad you've found the podcast helpful. I've found there are some amazing researchers and specialists working on finding a cure and new treatment options. Unfortunately, they don't get a lot of press, but LS research is becoming more popular. I've also found out the itch comes from the build-up of inflammation in the skin. So you're not too far off. It's just like a healing wound on overdrive. Have you listened to the interview I did with Dr. Jill Krapf? She does a great job of explaining the science behind it and why steroids are the recommended treatment. kzbin.info/www/bejne/fJXadnaud698eKs Following her treatment plan and the general schedule, I have reached remission twice. Currently, I'm on a 7-month stretch of being symptom-free. I haven't itched since the end of 2020, a couple of months after this episode was recorded. Have you signed up for our free virtual meetups? I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on the 15th. You can signup at lssupport.net/connect. Many people find it helpful to connect face to face with people who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. LS isn't actually rare. It's just under-diagnosed, but we're looking to change that. I hope you join us and that I get to meet you in person. 🥰🤗

[@mindyturk1426]

ice pack is the only thing that wont make me scratch!

[@sufficientgrace9921]

This is insidious and lonely.

[@LichenSclerosusPodcast]

It can be insidious but it doesn’t have to be lonely. Be sure to signup for virtual meetup so you can meet other ladies who understand. Lichensclerosuspodcast.com/connect

[@dawnruegsegger2362]

Please don't feel alone we are here for you and we all know how you feel kathy is great I just found out 1 month ago

[@ruthretzke8785]

This thoroughly nasty "creeping crud" totally destroys any sex life! I can not imagine what it must be like to be a guy who suffers from this horror show!

[@anna.banana.075]

SAD TOOK 11 MINUTES TO GET TO THE 7 WAYS

[@SherriP23196]

Put a finger down if you've ever had to suddenly get a little wilder during sex to relieve your itch cuz it started right in the middle of it 😂😂 Just me? 🤷🏻‍♀️🤷🏻‍♀️

[@LichenSclerosusPodcast]

😂😂😂LOVE THIS!!! I could totally see me doing this. Unfortunately my itch was on the mons pubis so I would have had to get all kind of wild and contortionist. 😆

[@misfitallday]

1

[@univerzaltruth6481]

How utterly rude and immature. Constructive criticism is an skill you might want to learn. I enjoy this broadcaster's videos. We all suffer from this and laughs are needed to relieve the stress. ❤

[@LichenSclerosusPodcast]

Thank you for your support! 🥰🤗

[@carolkerylow3966]

I dont see you giving any info on how to stop and cure this disease.A lot of talking and laughing doesn't help me.Sorry I even listened to your video.

[@LichenSclerosusPodcast]

Hi Carol. I can understand your frustration in not finding what you were looking for. Unfortunately there is currently no cure for this disease. I do talk about how to manage this disease multiple times through many different ways over my 40+ videos. This particular video was talking about dealing with one symptom. This channel is about hope and positivity. I use humor, smiles, and laughs to an ugly situation because I don't believe it has to be dry, doom, and gloom to still be effective. That's not my personality. Please remember I also have LS and this is a journey of discovery for me as well. I'm just taking you along for the ride. Everyday I learn new things and I try to share as much as I can in an orderly fashion to help people like you. I understand my delivery is not for everyone and I hope you find someone who is more to your liking. But if you find someone that tells you LS can be cured ask them to show you the scientific proof and then please email it to me ASAP because I will shout it to the rooftops. LS can be managed. I have been symptom free for 7 months after having symptoms for 7 years. It can be done. I share that in multiple episodes and multiple times on my social media channels and in my support groups. Once again I'm sorry you didn't find what you were looking for and I wish you all the luck that you do. 🤗

[@sahartanweer6503]

@@LichenSclerosusPodcast hi my 8 year daughter is suffering from LS . I am very depressed ..watched your videos want to discuss about my daughter particular case and really want to learn how it could be managed?? How can I contact you ??

[@shelleywinters6763]

Only men get a cure. Cut off the skin they are good to go. Sadly for women I was told if they cut off the skin, the lychen sclerosis would come back. I thought maybe if they can invent artificial skin then the solution would be, cut out the skin and replace it with artificial skin. From this channel I learned the body is attacking the protein in the deepest layer of the skin, so it would have to all go, bit like if you had cancer and cut that out. Untreated this condition can become cancerous, so not treating it is not an option. So until they can transplant us with new skin or turn off the auto immune response somehow, all we can do is manage it and reduce the symptoms and prevent developing cancer. Hope that helps

[@FragrantGain58]

@@LichenSclerosusPodcast Why are u saying there is no cure for this that is utter bull s××t ive have this the doc told me this is common and has sorted cream for this (Or do u mean even with cream diet etc it can be kept at bay and will always with you ) even in remission

[@lichensclerosussupportnetwork]

@@FragrantGain58 Correct, there is no cure. It can be managed and put into remission, but at some point, it will flare again. I'm currently 26 months in remission but I know one day my symptoms will kick up again.

[@priyasingh-fe4up]

awful presentation.. wd have been better if u cd stick to facts in a concrete manner than wasting everyone s time..

[@LichenSclerosusPodcast]

Hey! Thanks so much for watching and giving me a chance. Unfortunately, my style isn't for everyone. I hope you find someone who is more your style. 🤗

[@shelleywinters6763]

speak for yourself. In this condition we need support and feedback and someone to talk to, so you don't feel all alone in this. Doctors have been no help. They blamed me for being itchy, like noone else has this but me. Now I know I'm not the only one who deals with itchiness.

[@mariazuniga4621]

Not precise or to the point. A lot of blah, blah.

[@LichenSclerosusPodcast]

Hi Maria! Sorry I’m not your cup of tea. I wish you all the luck in finding the information the way you like it delivered. I hope your disease is being managed and you are living a happy healthy life. Good luck. 🤗

[@ginnyfromdablock7551]

Stop being rude!

[@shelleywinters6763]

she's not a doctor ok, she's just sharing her experiences with us and describing how she deals with it. I like the personal touch, clinical symptom listing treatment listing is not telling the whole story. I think they make it sound manageable. Here's what causes it, this is what you need to manage it, now off you go your fixed. NO! you're never fixed, you get issues all the time, daily and you need support on how to live with it. People with this need support, something to relate to.

[@univerzaltruth6481]

You failed to get the 7 points. That's a you problem.❤

[@janinelargent9220]

What are these people talking about? 18 minutes long and all the info was there. You have a lovely and friendly voice and I enjoyed your podcast