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My baseline is normal labia, I guess a flare for me is white tissue. I didn't have it a few months ago. I get minor itch time to time as well.

I am so greatful for this. I feel so seen. We're looking at trying to pregnant the end of this year. Id be willing to do one of these interviews after birth where i could share mine, for other people out there with LS. We desperately need more of these since there are big studies for all of us to go to for information

Could you address the lichen planar problem too?

My biopsy is tomorrow at the same time as my colposcopy. 😳 Ugh.

Have you heard about LDN (low dose naltrexone) being helpful for LS/LP?

I've just recently noticed the itching, stinging in my vulvar, I've been using Baby Magic baby lotion which has helped tremendously, thank you for the additional info - FYI, I've had Lichen Planus in my mouth for about 2 yrs and have used an oil pulling "Daily Swish" that helps, was recommended by Dr Eric Berg DC (love his video's) to take Purslane Herb which will help get RID of it!! When I started Purslane I was desperate, my mouth was full of blisters and since taking Purslane Herb, the blisters have disappeared and my mouth sores have improved immensely. I am hopeful the herb will also help with the lichen sclerosus!!

Excellent video, clear information and details on how to understand this problem. Thank you.

Please tell what you did to put it into remission.❤

Thanks for the information, which types of moisture should i use with lichen for sensitive area ?

I am dealing with LS treatment with Clobetasol and osphena. I’m 85 years old. Last flare up was 4 years ago. Just wanted to let you know about the osphena. Check it out. It may help!❤

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I have gone two years with pain sex,and bleeding my DR didn't hear me until I found a new 4 days ago my biopsy is today. I'm scared but hopefully I will now know what's happening to me!

Great idea. Are the fees the same from your last update ?

You guys are adorable. Thanks for sharing

Do we apply the clob steroid for 90 sec per white patch? I have 4 patches, I've been doing each for 90 seconds individually, not sure if it's too much or using too much product?

Is vaginal Estrogen a part of your treatment too?

I'm going through this exact issue.

We should be friends, if you'd like. I'm local to you. Going through the same thing. 😭

Coconut oil and aquaphor are my staples

Wow! Thank you for sharing! I was just diagnosed a month ago. I had symptoms for a year before I ever told the doctor, because I was so embarrassed. When I did tell the Doctor she thought I just needed to stretch it out. She said I should get a Dildo and some wine. A year later when I came back for my next physical. I told her it was too embarrassing and I didn't want to talk about it. Since, she didn't know anything about it, she said, ok. Six months later, the area was covered with blisters because I pulled my pants up too fast! Felt like I was getting hit with a hammer. So I went back to my Doctor and she referred me to the University of Iowa. It took about five or six months to get in. The U of I diagnosed me within seconds. I have no itching or red rash. I have white patches of skin, that look like partially cooked chicken breast. The Doctor says my eurita has hooded over. She can't even see it. But I feel very hopeful and I praise God that I found this doctor with all this knowledge. She took about twenty photographs of it. Which I hope she shares with other doctors. So they don't tell people to try to stretch it out, because that is a horrible horrible idea! I'm so glad you're in remission. You really have given me hope! Thank you for sharing this embarrassing thing!

I live in sherbrooke quebec, and you are so right, there is sooo little true help where I live. I truly feel my sexual, and relationship life is ruined forever. Sorry to seem such a downer, I've actually come to a point to sort of accept it. I am single and anytime I have a chance to meet someone, I just remember to ignore and picture all of the issues that would probably happen, and figure no one would understand, or judge LS, as a bad thing. I keep hope that maybe we will have more help near me, but I doubt. I try controlling fair ups, not fun! Sometimes things work, sometimes doesn't. The entry has narrowed too much for a comfortable relationship.

Hi im kunal bhor,I'm 23 yr. Old male from india 🇮🇳 . I live in small town yes we have specialist MD skin doc. In town its 27 nov. 2024 today im still not sure its. Lichen sclerosis but im pretty sure it is. Here is my story. . In 2022 i just noticed some White lines, (lightning⚡type structure lines) on my left side of foreskin ... I thought it must be something normal thing. It was very small 2 line smaller than half centimeter. Painless, non itchy. After some days I also experience skin thinning & little tare in foreskin,very small . Not to painful. So I use some wound healing cream. I thought it's bc of my uncircumcised foreskin I was blaming myself, my parents. Still was so confused wtf is this. I have big history of skin disease since childhood. I always get skin infection easily in every season, winter ending and early summer eczema errupts on my skin. Very dry wierd texture of skin in summer. In rainy season i get normal skin infection bc of wet weather. Idk why me??? Only me? Lol its funny for me now. I have uncut penis. Totally fine no tightness on my foreskin. After some months i went to skin doctor. He didn't understand he thought its because i don't mentain hygiene. I told him i take good care of my genital area. Im personally take gud care of my personal hygiene so it was not an issue. I took the pills 💊 and use the ointments, cream it was small but it was growing very slowly. Thats when i went to doc. It took me 8-9months to get completely get rid from that white lightning lines. ⚡⚡ Its 2024 in early feb. I again noticed same white lightning line, ⚡ type structure in circular shape patch on left side of my penis head. Going down on left side of foreskin covering 1cm circular type area. I ignored this time bc i was so done with skin diseases. I always had bad history of skin Since childhood, I'm still a student. I've been through lots of kinda skin diseases its weird bc it was to often in my life. Ezama, athlete foot, yeast infection, lots of allergies of skin, etc. And now this. I ignore so just 1 month before 1-2nov.2024. I went to MD skin specialist doctor. I told him it looks like lichen sclerosis (BXO), he asked me if i had sex with anyone recently? I said no. My first sexual intercourse happened first time and last time in 2023 aug/sep. He said its not BXO or anything its look like you have sone sexual skin infection. I was not in mood he was constantly telling me that it's bc of sexual infection. I said nothing I was frustrating at this point. i thought its going to be a very normal yeast infection like thing. i had it before bc i have uncircumcised penis I was so f* d i told him i haven't had any sex my reports are normal. He still gave me diabetic, blood sugar, urine/R, blood grp test, hiv test. Hiv - negative. I bearly had sex with anyone in my life im asexual so its not evn point to talk. But i checked on whole internet , i saw the same thin White line structure on foreskin, i read lot of blogs, saw videos on internet but didn't find satisfying information. Except the Google images of lichen sclerosis which exactly match with my foreskin skin issue. Idk wtf is going on. I was so busy this month i didn't go for re-checkup . And my blood reports are not come yet. But im afraid and litr. Dying, sad,depresed ,in my bed since last 20 days. I loose 4kg this month. Im just a 42kg , 23yr old man. Its f* affecting my mental health. Im f* sure doctor don't even understand the things they just run the big a$$ hospital and charge a$$ fees and didn't give the satisfactory result to patient. Anyway so i use his vary basic 1 yeast infection cream been 21-22 days. But my foreskin white line circuler patch is still there idk its growing, or decreasing in size. But the patch on penis head is little visible. Please pray for me. It has to be a normal skin infection. I can't take that if its going to be a lichen sclerosis. I cud kill myself. I don't want to liveveith something like that..why its suddenly appeared in my life ,i an 23yrs. I have life ahead. . I hope it turn out something very basic treatable skin infection , i don't even have money to deal with it I'm just a student. Lets see what happens. I'll keep you update guys about my skin issues. soon.... 🤍 and thnx for reading. I am sending so much good blessing to all of you guys who suffering. May god keeps you guys forever healthy. And hope someone could find a great effective treatment on it. 🤍 amen/ jsi shree ram 🙏

Thank you so much for your videos! 🙏🏻Can you answer please, did the fusion of the clitoral hood continue during your treatment? I'm using clobetazole now, but the hood is stuck to the clitoris:(

I would like to suggest that you JUST list that this is for EDUCATIONAL purposes only... which I know there is a legal reason. ( Listing it also as for ENTERTAINMENT purposes kinda of diminishes what you do.,) -Janet Warren

Great video, thanks.

Thank you so much for sharing! You are telling my story... 5 years ago I was shocked by all these terms.... Since that I’ve managed to get under control one locus of sclerosis with the help of Calcineurin inhibitor, but I did not know I needed to apply cream to other areas without symptoms, and here is the result, LC began to occur at that areas... That's why my story continues.. Could you answer the question please, doesn’t clobetazole provoke atrophy and sclerosis itself? It’s such a dry, tight skin after application…

Thank you so much!!

I found your video. Thanks for sharing. I think there’s gonna be an immunosuppressant on the market in the next 5 years for this horrible disease. May I ask, did y’all ever try penetrative sex again?

Thank you for your research and sharing. I have recently been diagnosed and today meet with a gynecologist. So I am more prepared.

My doctor has me using CeraVe healing balm.

Just 2 short days ago I was diagnosed with LS. Fusion has already happened between the minora and majora. I only started getting a severe itch a few weeks ago. I will see a gynecologist in 2 or 3 months. I am 67 yrs young and am living in a common law relationship for 15 years now. I find this trauma and healing very provocative. Lets say, I'm curious. I am also very very frightened. The C word, the no cure phrase. It is extremely hard because my partner is either in denial or just naturally fluffs it off. He is actually avoiding me even though he sees how stressed and confused I am. I can relate with you on the controlling religion life. With my first husband of 34 yrs, we were JW and it was the man who had all the authority in the house. If I said no not tonight he'd say "its your duty toward your husband. If I still refused he would bounce his legs or body all over the bed at night not letting me sleep. I gave him sex most nights and even sometimes during the day. He didn't care that I wasn't responsive. I left him after the kids were grown and on their own. Only to fall into another relationship where the demand for sex had to be met. Its not fair, he says. Its good for my health to have regular sex. You don't love me. But at least this time I can say a definitive no and get some sleep. My partner is very large and its always hurt me somewhat. I tried to ignore it and keep a game face. Then the pain in one spot got to be too much. I went to an Sexual Options clinic and heard the dreaded words. LS, cancer, no cure, steroids for life. On the hour drive home I tried to tell my partner what was happening but I fell way short. It was just too much to process in the matter of 30 minutes. The next day, Friday he kept busy and I pretty much stayed in my room researching/crying, trying to hold it together. Today he went for a drive so I'm alone again. My daughters father has just been diagnosed with gallbladder cancer and only 6 months to live. They need my support so I cant go there right now. So I found this article that i am replying too. I'm left with the feeling that LS may have come upon me because I may be in a no touch mode with sex. I think its been there for a long time because of the fusing, and then all of a sudden Im itching like I have never felt before. Is my body protecting me from being touched? The steroids have already stopped the itch thank goodness. But I am traumatized by what the outcome could be. I feel completely alone. This morning he snapped at me, giving me a sign that he's not available. There was so much information in your talk today. I must read it again. Oh and BTW. My mother called it a Piggy right from my first understanding. My name is Kare

Mam i have a labial fusion, my age is 29 what i do?

I was finally diagnosed in March 2024 after many years of misdiagnosis (candida/not candida but don't know what it is so go away & change your washing powder, don't use fabric softener, change to cotton underwear, etc) & suffering from dreadful itching & fusion. I was told to use dermovate (clobetasol) daily for 1mnth, then every other day for 1mnth, then once a wk for a month (whoch didn't help) then i was seen again. I was told to go back to using once a day until itching stopped, then taper as before & i would be seen again in 6 months. It didnt help so i started using twice daily which helped a lot. But as soon as i went back to once daily, the itching came back so i then tried betnovate which helped but again as soon as i went to once daily, the itching came back with a vengeance so i am at a loss & nearly at the end of the 6 month waiting period so will see what my consultant comes up with when i see her in a few weeks. It seems here (England uk) that one protocol has to suit everyone & medics need you to fit into that & you're a nuisance if you don't. i've seen my gp between times & i'm just told to keep using the clobetasol cream but to stop using it so often as quickly as i can as it's not good to keep using it so frequently & that i should try other naturally soothing products to calm the itching instead. I can't use any of the washes or moisturising/barrier creams i've been presribed as they all make the itching worse. It's a minefield & takes so long to get to see any one, & still siffering in the meantime. I know stress can be a factor - i have cptsd from trauma & i've also had a lot of stress this year, (& i also have M.E. & fibromyalgia but i'm also being tested for polymyalgia rheumatica & lupus). I'm also told candida in the gut wont necessarily show up in the vagina but can cause vaginal itching - i don't know jow true that is but i'm doing an anti candida diet, (which after 6wks isn't helping either). I would like to know what other treatment creams there are that i can try - perhaps my constant can advise me on this (always hoping she is knowledgeable enough).

One thing I would like to add because it really helped me is to take a warm bath with baking soda in it.

Does the pigmentation go back to normal

This is very helpful. I’m getting a biopsy in 2 weeks on an itchy sore spot that I’ve had for about a year. I’m so nervous and I know it’s going to hurt. 😢 Update: I had the biopsy, and it was painful. Two days after the biopsy opened and was bleeding a lot. I had to go to the ER and get 4 stitches. It was so painful. I had 4 shots of lidocaine and could still feel every stitch. The only good news is that no cancer was detected. I have Lichen Sclerosis. If I ever have to do another biopsy I will ask for the numbing spray

I have just watched your three videos with your lovely Andrew. Thank you both so much for being so generous with such a vulnerable area of your relationships. It's given me hope where there hasn't been for quite a while. So 🙏🙏🙏 I am learning so much from your podcasts in general. More than I've ever known since my diagnosis, which was around ten years ago, so again, many thanks indeed for your generous dedication. 🙏🙏🙏

Thank you. I finally got to a doctor who has me on the right track.

Been dealing with itching, burning since jan this is now nov. 😢. Thought i was allergic to new toliet paper. Doctor said to try antihistamine. No help. Different creams , ointments, rx and otc. No help. Now have a bump, painful. Saw GYN. having vaginal ultrasound. She thinking LS and drain, bx of bump next week. Wish me luck.😢😢

This was great!

I put mine in to remission by simply using castor oil, and my last visit to the doctors I asked her to check , and she said everything looks very healthy…no I didnt mention the caster oil because here in the UK we have NHS and they look at anything herbal remedies it’s they’re way way or nothing 🙄

Does LS extend your your groin?

I am so grateful for your podcasts, Jaclyn. I was diagnosed with LS over 8 years ago, treated with Clobetesol and went into remission. I stopped using the Clobetosol, fearing skin-thinning. Recently I relapsed and have been back on the Clobetosol for about 6 weeks. Several days ago I found a small lump to one side of my clitoris. It's really freaking me out! I see my dermotologist in a couple days for follow-up. I'm going to ask for a biopsy, though I'm really scared. I can't tell you how much I appreciate you for raising awareness! God bless you.

So helpful. Thank you for sharing all of your learning. Recently diagnosed and you have provided so many valuable insights. Will keep following and absolutely will connect with the various resources you have shared

❤great video,

Thank you so much, i was diagnosed 4 days ago. Have watched many of your videos. You are so calm and soothing and offer hope. ❤

Ointment, ok got it.

I’m 78 with spinal pain and there’s not a snowball’s chance in hell that I could actually ever manage to see my vulva.

I have Lichen sclerosis in my vigina very bad I have now got Dermovate cream for it .I have got to ues it once a day for a month. Please do I gently wash my vigina with warm water every time before am going to ues my cream. As am afraid it's going to wash off the steroid cream.

Dermnix Oil formulated for the treatment of Lichen Sclerosus. Excelent product.