Hope you enjoyed this episode! I received lots of great feedback after airing it. I'd love to hear what you thought. Leave your comments + questions below :) And if you want more information on this topic, check this out → www.skinterrupt.com/?s=lichen+sclerosus
I’m 70 years old and was diagnosed with Lichen sclerosis 25 years ago. At that time I was never offered any treatment and there was no discussion. It was just 5 years ago that I was offered and treated with steroid cream. The longer I used it the more pronounced my symptoms were. After years of misery and no answers, I stopped the steroid creams and began using A and D ointment (without the zinc oxide.)Within a couple days all my itching stoped and has never returned. My skin tissues are still sensitive but I am completely itch free. Such a simple solution. This has changed my life.
Yes, please tell us which ointment. I saw a lot of A & D ointments have white petroleum jelly as their base. Decided to give my cod liver oil a go to see if it does anything. They've cut me back to every other day after two weeks of every day. I'm not happy about the toxicity of the steroid.
@@SusanWelch-ms9hg I’ve stopped using the steroid, I’ll let you know how it goes. I’d like to get some A and D ointment but I don’t know which one to get. 🤷🏼♀️
@@jeble5341 Thanks jeble. Yes, I would love it if you gave us an update after you stop the steroid. I'm now eyeballing an ointment called NutriBiotic Skin Ointment with Lysine. Amazon has it and also Vitacost for a bit cheaper but have to pay to ship. No petroleum jelly. Seems the cleanest I can find in terms of chemicals. Hope to hear from you soon.
Im greatful i grew out of it by forth grade , my mom took such good care of me with not knowing what it was an searching for anwsers. I had to wear dresses bc of always having pain , she put creams on me , oat meal baths , an helped while i cried all the time . I pray for adults suffering with this.
No young child should go through this. What's with these doctors?? Because we are females we often don't count. Only the male gender is important. Just look at all that we women go through in this life!!
I had a biopsy done in early 80's when i was 35. It didnt bother me for many years. The last 3 years it has returned with vengeance. I have tried many topicals. I only use globe when the itch surfaces. I had labia fusing , so i saw gyno. He confirmed i have ls and wants to c me again in 6 months, because it can turn into cancer. I was celibate for many years and dr said i shouldnt have waited so long to have sex. My mother died when she was 75 and had told me she was a virgin again before she died. I wonder if she had ls also. When i was 71, i could feel there was something going on in my vagina that felt like palpations. So after that the ls showed up. Good luck to anyone who has this. I can say that there was a period of time in my 40's i did KM for my verigo and did not have any ls symptoms. I did KM for many years and at 50 i did hrt, in measured doses for 3 hormones. No real problem. It got worse with the stress of retiring and 24/7 with my husband. Ls. Has been around 10 years and has gotten worse each year. Divorced for 6. He said i was making it up to avoid sex with him. Lol. Almost wish it was contagious so he would shut up. 😅
@thewordsmith5440 no. He says I'm making it up so I wouldn't have to have sex with him. When I was in my 30's and found out what I had, it wasn't in the same area. He doesn't believe it migrated.
I was on clobetasol for 6 years, having been diagnosed with LS in 2014. In 2020 I became so weak and sick in so many ways that after 1 1/2 yrs of being sent from one specialist to another and a pile of tests, I was sent to the Mayo Clinic in MN. I tested positive for Secondary Adrenal Insufficiency. One of the endocrinologists I worked with afterward threw a fit and insisted my SAI was due to the Clobetasol ointment. It was immediately stopped & I was told never to use it again. I was left on my own, though, to find other options. I researched and use an assortment of natural ointments and creams. And my GYN doesn't even see any white patches now. I use Aquaphor, coconut oil, emu aid, several ointments from Perrins natural products - and especially their pure 'soap' (lots of women with LS use products from Perrins). No baths. Showers only. Women need to be careful about using the Clobetasol. SAI is a terrible disease to live with.
Coconut oil made it so much worse for me I take no medications anymore I use castor oil change of diet and hot shower head water directly on as hot as I can make it
Get ivermectin horse paste and start taking it… a pencil size eraser by mouth each day, I take two but I feel some thing is trying to form. I've had it for over 20 years… and put the paste down below too. I swear people are curing cancer, lime disease and many other things with it. I just starting taking it and the itching is gone.. It feels normal at the moment. I went through a serious flarecafter eating something and got desperate and tried the Ivermectin. Watch what you eat, no sauces, none.. Ranch, spysauce, toasted ravioli gave me a flair, somethings in it that is causing us problems. Eat clean.. Meat with herbs and spices.. No lowerys, no season salts, the put anti caking poweders in that stuff.
Retired nurse, I am suffering the worst flare up I’ve ever had, spent 2 months adjusting my diet ( which usually works) finally became so desperate on day 3 of a 30 day water fast ( not advising anyone else to do it) slowly starting to see very slow progress, made an appointment to be evaluated by a Dr who does acupuncture ( the only thing my Dr recommends is Clobetasol , which does nothing 😑
Clobetasol ointment does absolutely work if you used it correctly ……cream is not strong enough. I have been treating my lichen sclerosis for 10 years with Clobetisol ointment in addition to an estriol cream. The area must be dried off before applying the ointment and it must be rubbed in well. If the area stays white you have not used enough, and if it turns red, you have used too much …..you must learn to balance this. I also am dealing with, and have been for 20 years, OLP which I also treat with clobetasol, but I use the gel form a couple times a week when I am having a flareup. I am followed by an oral pathologist who monitors the situation.
I went to a low carb diet and I use Tamanu oil, Emu oil, and if I ever have itch (which is rare now) I use Sovereign Silver Gel. Sometimes I just mix it with the oil and apply everyday. I'm in remission.
I found it hard to stay committed to listening because both women said “lady parts” early in the recording, instead of using correct terminology. Dr Cabeca also touched on the shame patients feel in even talking to their doctor about this disease. What better way to reduce shame than to normalize by using correct terminology? Nevertheless, she created a product that I know many women with lichen sclerosus have had success with so I kept listening with gratitude.
The reason is that the main audience is moms who may be listening with young children around. While I am not bothered by using appropriate terminology, we wanted to keep the conversation where mom could still listen if the kids are around if the medical terms aren't something they want playing in front of their kids. I hope that helps you understand why this was the case
@@jenfugo it does! Thanks for responding. I know not all parents are comfortable naming or discussing body parts in front of their kids, so you found a balance for viewers.
A great video, I have battled with this! It started with scalp issue and I was diagnosed with Lichen Planopilaris. After that upon reading info I feel I have an issue with the mucousa - mouth and vagina. No one seems to want to deal with it. I read one thing that said diet doesn't play into it and yet I know acidic/spicy foods irritate my mouth. I recently worked with functional medicine dr and eating keto, went off my Lipitor as I felt that was a source of inflammation. A lot of my body inflammation has subsided but my mucousa is still having issues. I do take Dapsone 25 MG and have various Betamethosone ointments for mouth and vagina. Clobetasol solution for scalp. My general outer skin not an issue other than being dry. I went to a new Dermatologist and she is sending me to get checked for lichen schleroderma
I read that polysorbate 60 and 80 can cause a huge histaminic inflammatory response. It was on FB under this topic. Burning mouth syndrome was stopped when I eliminated this toxin. It's in everything-food products especially condiments, shampoos, lotions, toothpaste etc. I now use salt as toothpaste and eliminate the polysorbates to stop burning mouth. Look it up:)
Yes I think this is what I’ve got ,,been to the doctor nature path and even went to emergency as the pain was so bad,iam 69 and have done the boric acid now going to try the progesterone cream ,so hope this helps ,,great video
Hi i live in the uk and to stop using topical creams all the time i use, doublebase gel, stops the itching, and adds moisture, also use pure coconut oil
I have lichen. I am deformed from it. My inner labia have fused to my vaginal walls, and my clitoris is gone, leaving me a hole where the urine is released. I have been told I need to be careful for possible cancer. I've been seeing an OBGYN, but should I be seeing a dermatologist?
Thank you for sharing your experience... While I do not have LS, every woman I know with it would agree 100% with your statement. It's incredibly difficult on multiple levels to deal with
I have had it for about a yr & was diagnosed by my gyno, I’m also a diabetic too, it’s very painful & depressing. I’m 76 & am a widow so I’m not sexually active, It also has affected my mouth also (lichen planus). It’s the pits. I’m thankful for this channel & others like it.
I (68 years old) was diagnosed with LS within the past two years. When it first started it wasn’t too bad - only a little itching and some pain. Then it went away……until it started to rage about 7 weeks ago. It is awful! It spread into the area were your panty line would be. The elastic in the underwear was rubbing against it, so I sought a solution other than going commando (😂). I ditched my underwear and started to wear my boyfriend’s boxer briefs - sweet relief from the constant friction.Then I searched for women’s boxer briefs (Amazon has bamboo womens boxer briefs and they are so comfortable you don’t even know you’re wearing them.” Thank you for all the suggestions about what works for you. I hope it goes away soon!
Ever since I started using Symbicort for my asthma I developed Lichen Sclerosis. I quit taking it for 2 weeks and Lichen Sclerosis went away. I told my gynecologist about it and she said I've never heard of that. So if anybody is taking an inhaler Even the emergency inhaler for asthma. Check into it.
This is a very old thread, but I am going to throw this out there. Mine seems to have started during a period of extreme stress. And long term, like.....years. I'm wondering if our own cortisol is wanked out as a cause. Either too high or too low or both after long term stress. Just thinking out loud.
I am one who has had a partial vulvectomy due to Lichen Sclerosis and the biopsy on the skin that was removed was VIN3 (pre-cancer cells).....I had thought I was allergic to toilet tissue as I had such burning after using. But, I will say that I have an older sister who also has this condition...we are both in our 70s. And we have been told it was an autoimmune disease. I have been treating it with Clobetasol for a couple of years. I am concerned about the affecting my Adrenal system.
I have used Julva for a couple of years. Several years ago I had a spinach salad for lunch and very shortly after had massive diarrhea and was so dehydrated that I needed two liters of IV fluids. Unfortunately the Maça contains spinach. Dr Anna do you have an alternate for the Maça. I do have lichens sclerosus and have had it life long. I am 76 now. Nothing has really helped. Julva is soothing but not curative. I am gluten free. Any additional suggestions would be appreciated. I had massive hives from clob but use halobestrol. I am followed regularly.
I have had it for a year now. I am a 48 year old male and have it under my shorts. Its so painful and I get it every 3 months. It hurts to go to the bathroom or to be intimate with my wife.
over 25 years ago .. and having gone from one doctor to another ..I was diagnosed with LS ... add in by that that time, my husband divorced me because of the inability to have intercourse. Here I am now being able to go on You Tube and find out information that I needed years ago. My mind is reeling ... after all these years .. is there any help for me after all these years? I would love to the ability to be intimate.
I had been diagnosed with licchen sclerosis in 2019, biopsy was done by removing all the discoloration of white patches. Its back and it is frustration. Need a clarification, can this disease cause cancer in long term? Clob does not work at all.
I appreciate that this works for you, but there are others who have tried this and do not find it helpful. So it's always important to try different things and see what actually is helpful for the individual
I have the feeling that most women treating this have not gone through the pull hell lichen sclerosus does to you and just when flare up ends, another one can start a day or two later. You can't sit nor stand. Wear pants? No!!!! Every one I have gone for treatment has never had it and many physicians who take down my medical conditions, have NO IDEA how much of a painful this is. I'm truly disgraced that more medical professionals have no idea much less an impact thar it has in their lives much life a ZERO sex life. I want to hear from people who actually have it and be treated by someone who knows firsthand the extreme severity of pain it causes.
I was just diagnosed of LS but never have itchiness. My only symptom is chronic microscopic blood every time I have UA ( urinalysis) and severe stabbing pain during contact. For years I have been treated from recurrent uti and now I have to bear down when I urinate only at night. Presently I’m now treated with tapering dose of clobetasol and no sex 😂 😢my poor husband!
As a result I've also developed another issue on top of that called Labial adhesion!!! Part of my labia is closed shut revealing only a small area where my vaginal opening is it's very frightening how this happened.. also amazing I'm able to still urinate . That area has not closed off thank god!! ... happened so quickly I don't even really know the timeline but it must have been in a short span of time I want to say sometine inbetween 2 years roughly when I stopped taking my HRT abruptly. I felt something unusual and looked with a mirror and could not believe the horror to see the skin fused shut I have no idea how to fix this problem I went to 2 gyns .. all they recommended was aquaphor ointment.. the other said I should put estrogen on which I did for an entire year daily with know benefit at all ...😭😭😭😭😭 I don't know where to turn with this issue I would like to have it surgically opened but I don't know where to go the skin on my vulva is practically white in color 😯 it's the worst nightmare!!
Zoey...I had the exact same horror as you. Seeing how small my vaginal opening is crushed me. I tried the creams and now I am going to consider surgery. I am 61 and feel I am doomed to being single. Only positive is I haven't been real itchy like before. How are you making out now?
I really don't know as it was specifically formulated for women. My guess would be no since hormonal issues are different in women vs men but you could always contact them and ask
I have been diagnosed with lichen planus on my vulva. Is this the same as sclerosis? My doctor has given a the strongest steroid but iv been suffering for over three years.I’m suffering. Please reply me. Thank you .
Lichen Planus is different and harder to treat. I’ve had it since 2015. I have two gynecologists and one dermatologist who have helped me. I have vulvovaginal lichen Planus. This involves both my vulva and my vagina. I use Clobetesol once a week and Protopic twice a day on the vulva, which was prescribed by the dermatologist, and it has helped me more than anything. I use Anucort suppository in my vagina once a week for the vaginal discharge. This stops the discharge. Seek help from specialists. My regular gynecologist wasn’t very familiar with the problem. It took time to find the right people who can help. Good luck.
In the US, you can get them over-the-counter. They even sell them on Amazon like there a.co/d/dL3zES3 If you try them, please let us know how you make out and if you find them helpful!
@@jenfugo Way back in the 80s when you still needed a doctor's prescription to get Monistat cream, a nurse practitioner way ahead of her time recommended making boric acid suppositories. She had me buy the large-ish size empty gel caps and fill them with boric acid you can get at the pharmacy. A lot cheaper than buying them. I had several rounds of antibiotics around that time and always seemed to be dealing with a yeast infection. This was before most doctors understood antibiotics cause yeast overgrowth. Anyway - the boric acid worked like a charm. She advised one at night as a suppository for 7 nights. Then every other night for another week. Then every 3rd night the third week. I have also used boric acid with great success for a ringworm infection on my leg. Tried everything - things like iodine etc. But the boric acid dried it up within 24 hours. Boric seems to be great for anything fungal. Works for dog mange too. Makes me wonder if LS is fungal. Some on this site commented that getting off of sugar and carbs helped.
I'm new to LS, but I'm growing to be convinced that the gut has a lot to do with it. PPIs scare me because you stop digesting your food from low stomach acid. I am concerned every time I see someone on them. All alternative docs say you need MORE acid. I guess that sphincter muscle between the esophagus and stomach doesn't close tightly unless the stomach acid is HIGH. Dr Ben Edwards, who collaborates with Morley Robbins, has people take HCL as a supplement for this and has had great success. I believe Dr Edwards has a vid or podcast about it. Anyway, yeah, I'm thinking it could contribute. But...I'm just a nobody, basically.
@@RainBow-uf7hb only research studies.. but best to just assume your grandmother was exposed to ddt and we are exposed to Pfas, bpa, mercury and copper all which wreak havoc below the waste
I did not know what l had until l heard this!! Had nothing to help it. It’s soooo painful once it gets going. All l could do is wear loose clothes and ice it. I want to buy the cream, where can l get it??!!!!!!!!!
I'm sorry to hear that you're dealing with all of that, Deborah. Maybe just starting to work on one area to improve health overall could be helpful because sometimes too many things can feel overwhelming. It sounds like you've got several gut related things so maybe start there 💛
Hi! Thank you for this! I know I have a yeast issue, so I'll be trying the boric acid suppositories. I just had a hysterectomy at 49 due to endometrial cancer, so I can't do estrogen anything. I'm wondering if the julva is a no for me. I know it doesn't have estrogen, but maybe it's a no go because it sounds like it would stimulate my body's production of estrogen.... any thoughts? Thank you!
Don’t try boric acid!!! I tried it and I had bleeding from it (before I had the hysterectomy). I don’t know what the best solution is yet but I will not do boric acid ever again!!!
@@TB-yx5of glad it works for you! It made me bleed!! I don’t find it safe for myself but we all have our own ways to discover. I seek guidance from the Holy Spirit to show/confirm what solutions are right for me. If I start on something that’s not right-if I forgot to pray to Him about it first!-He shows/confirms to stop or not. When I have peace about something, that is sometimes a confirmation sign. But I read the Bible (Proverbs has a lot of advice), praise God (listen and sing to Christian music with lyrics on UA-cam) and with thanksgiving, pray to God for direction. He NEVER fails to answer in various ways! 1 Corinthians 1:24 24 but to those whom God has called, both Jews and Greeks, Christ the power of God and the wisdom of God. Commit to the Lord whatever you do, and he will establish your plans. Proverbs 16:3 I Google different verses and questions on all kinds of topics. This one was also helpful about wisdom in general! www.gotquestions.org/fear-Lord-beginning-wisdom.html God loves us and cares about our lives and health here and whether we go to heaven or hell once we leave! ““For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life. For God did not send the Son into the world to judge the world, but that the world might be saved through Him. He who believes in Him is not judged; he who does not believe has been judged already, because he has not believed in the name of the only begotten Son of God. This is the judgment, that the Light has come into the world, and men loved the darkness rather than the Light, for their deeds were evil. For everyone who does evil hates the Light, and does not come to the Light for fear that his deeds will be exposed. But he who practices the truth comes to the Light, so that his deeds may be manifested as having been wrought in God.”” John 3:16-21 NASB1995 bible.com/bible/100/jhn.3.16-21.NASB1995 God bless you and your family and merry Christmas!! ✝️❤️🙏🏻
I've found that topical vitamin D3, which psoriasis sufferers advocate, and prescription tacrolimus, help a lot. As per studies topical D3 help prevent a lot of the angiogenesis caused by the topical steroids. There are people that have a bad reaction to the D3 too, but it seems rare from all that I've read. PRP injections resulted in a 2 year remission for me.
The autoimmune paleo diet,finding a functional medicine doctor who put me on vitamins and HRT,and 3 Thermiva treatments done by a gynecologist helped me to achieve remission.Ive been in remission for over 7 years🎉
Dr. Nathan Newman has treated over 200 LS patients with 100% using stem cell PRP therapy. He’s a dermatologist in Beverly Hills California. He has a website, UA-cam channel and check out his yelp
@@robertmccabe8632 homeopaths use dowsing. Idk the concept of witchcraft that you have, but dowsing works with ideomotor response just like kinesiology.
What makes me furious is that insurance won’t pay for laser treatments becuz it’s considered cosmetic. I am just disgusted..I’m trying hormonal cream now and insurance won’t pay for that either..😊
Hope you enjoyed this episode! I received lots of great feedback after airing it. I'd love to hear what you thought. Leave your comments + questions below :)
And if you want more information on this topic, check this out →
www.skinterrupt.com/?s=lichen+sclerosus
I’m 70 years old and was diagnosed with Lichen sclerosis 25 years ago. At that time I was never offered any treatment and there was no discussion. It was just 5 years ago that I was offered and treated with steroid cream. The longer I used it the more pronounced my symptoms were. After years of misery and no answers, I stopped the steroid creams and began using A and D ointment (without the zinc oxide.)Within a couple days all my itching stoped and has never returned. My skin tissues are still sensitive but I am completely itch free. Such a simple solution. This has changed my life.
Where did you get the ointment from please.
Yes, please tell us which ointment. I saw a lot of A & D ointments have white petroleum jelly as their base. Decided to give my cod liver oil a go to see if it does anything. They've cut me back to every other day after two weeks of every day. I'm not happy about the toxicity of the steroid.
@@SusanWelch-ms9hg I’ve stopped using the steroid, I’ll let you know how it goes. I’d like to get some A and D ointment but I don’t know which one to get. 🤷🏼♀️
@@jeble5341 Thanks jeble. Yes, I would love it if you gave us an update after you stop the steroid.
I'm now eyeballing an ointment called NutriBiotic Skin Ointment with Lysine. Amazon has it and also Vitacost for a bit cheaper but have to pay to ship.
No petroleum jelly. Seems the cleanest I can find in terms of chemicals.
Hope to hear from you soon.
Awesome castor oil worked for me and changing my diet
Im greatful i grew out of it by forth grade , my mom took such good care of me with not knowing what it was an searching for anwsers. I had to wear dresses bc of always having pain , she put creams on me , oat meal baths , an helped while i cried all the time . I pray for adults suffering with this.
No young child should go through this. What's with these doctors?? Because we are females we often don't count. Only the male gender is important. Just look at all that we women go through in this life!!
FERMENTED FOOD IS A CRITICAL TO GUT HEALTH. BUMMER.
@@lindakautzman7388 Are vaginas considered a gut?
What kind of creams did your mom use on you? TIA
@@Godfirst1234 some kind of steroid creams
I have lichen sclerosis. I was diagnosed in my 50”s. All through the years I thought I had yeast infections but all the tests came back negative.
I had a biopsy done in early 80's when i was 35. It didnt bother me for many years. The last 3 years it has returned with vengeance. I have tried many topicals. I only use globe when the itch surfaces. I had labia fusing , so i saw gyno. He confirmed i have ls and wants to c me again in 6 months, because it can turn into cancer. I was celibate for many years and dr said i shouldnt have waited so long to have sex. My mother died when she was 75 and had told me she was a virgin again before she died. I wonder if she had ls also. When i was 71, i could feel there was something going on in my vagina that felt like palpations. So after that the ls showed up. Good luck to anyone who has this. I can say that there was a period of time in my 40's i did KM for my verigo and did not have any ls symptoms. I did KM for many years and at 50 i did hrt, in measured doses for 3 hormones. No real problem. It got worse with the stress of retiring and 24/7 with my husband. Ls. Has been around 10 years and has gotten worse each year. Divorced for 6. He said i was making it up to avoid sex with him. Lol. Almost wish it was contagious so he would shut up. 😅
He is trying to saying not having sex caused it?
@thewordsmith5440 no. He says I'm making it up so I wouldn't have to have sex with him. When I was in my 30's and found out what I had, it wasn't in the same area. He doesn't believe it migrated.
I was on clobetasol for 6 years, having been diagnosed with LS in 2014. In 2020 I became so weak and sick in so many ways that after 1 1/2 yrs of being sent from one specialist to another and a pile of tests, I was sent to the Mayo Clinic in MN. I tested positive for Secondary Adrenal Insufficiency. One of the endocrinologists I worked with afterward threw a fit and insisted my SAI was due to the Clobetasol ointment. It was immediately stopped & I was told never to use it again. I was left on my own, though, to find other options. I researched and use an assortment of natural ointments and creams. And my GYN doesn't even see any white patches now. I use Aquaphor, coconut oil, emu aid, several ointments from Perrins natural products - and especially their pure 'soap' (lots of women with
LS use products from Perrins). No baths. Showers only. Women
need to be careful about using the Clobetasol. SAI is a terrible disease to live with.
I feel like the clobetasol cream makes it more painful. I’ve been icing myself every evening and when I have bad flare ups. It gives instant relief.
Did they treat the SAI?
Hi after goin the natural route did it came back for u?
Coconut oil made it so much worse for me I take no medications anymore I use castor oil change of diet and hot shower head water directly on as hot as I can make it
WHAT KIND OF ESSENTIAL OILS COULD BE USED IN THAT AREA?
Can you just give us a list of what to do ? I just want to know what to do.
Get ivermectin horse paste and start taking it… a pencil size eraser by mouth each day, I take two but I feel some thing is trying to form. I've had it for over 20 years… and put the paste down below too. I swear people are curing cancer, lime disease and many other things with it. I just starting taking it and the itching is gone.. It feels normal at the moment. I went through a serious flarecafter eating something and got desperate and tried the Ivermectin. Watch what you eat, no sauces, none.. Ranch, spysauce, toasted ravioli gave me a flair, somethings in it that is causing us problems. Eat clean.. Meat with herbs and spices.. No lowerys, no season salts, the put anti caking poweders in that stuff.
Castor oil 100% change our diet no gluten fake sugars chemicals hot shower direct on area I easily got off steroids and fasting also easy fast
Retired nurse, I am suffering the worst flare up I’ve ever had, spent 2 months adjusting my diet ( which usually works) finally became so desperate on day 3 of a 30 day water fast ( not advising anyone else to do it) slowly starting to see very slow progress, made an appointment to be evaluated by a Dr who does acupuncture ( the only thing my Dr recommends is Clobetasol , which does nothing 😑
Have you tried diluted Frankincense essential oil?
Clobetasol ointment does absolutely work if you used it correctly ……cream is not strong enough. I have been treating my lichen sclerosis for 10 years with Clobetisol ointment in addition to an estriol cream. The area must be dried off before applying the ointment and it must be rubbed in well. If the area stays white you have not used enough, and if it turns red, you have used too much …..you must learn to balance this.
I also am dealing with, and have been for 20 years, OLP which I also treat with clobetasol, but I use the gel form a couple times a week when I am having a flareup. I am followed by an oral pathologist who monitors the situation.
Also a retired RN
I went to a low carb diet and I use Tamanu oil, Emu oil, and if I ever have itch (which is rare now) I use Sovereign Silver Gel. Sometimes I just mix it with the oil and apply everyday. I'm in remission.
Thank you! Have been diagnosed for the last 10 years after a biopsy. Im only in my early 30s and had it in my 20s
Same here
Same. 😿
Same
This video is literally my answered prayer!!
I found it hard to stay committed to listening because both women said “lady parts” early in the recording, instead of using correct terminology. Dr Cabeca also touched on the shame patients feel in even talking to their doctor about this disease. What better way to reduce shame than to normalize by using correct terminology? Nevertheless, she created a product that I know many women with lichen sclerosus have had success with so I kept listening with gratitude.
The reason is that the main audience is moms who may be listening with young children around. While I am not bothered by using appropriate terminology, we wanted to keep the conversation where mom could still listen if the kids are around if the medical terms aren't something they want playing in front of their kids. I hope that helps you understand why this was the case
@@jenfugo it does! Thanks for responding. I know not all parents are comfortable naming or discussing body parts in front of their kids, so you found a balance for viewers.
Yea what does it really matter what we call it??@@cognossance
A great video, I have battled with this! It started with scalp issue and I was diagnosed with Lichen Planopilaris. After that upon reading info I feel I have an issue with the mucousa - mouth and vagina. No one seems to want to deal with it. I read one thing that said diet doesn't play into it and yet I know acidic/spicy foods irritate my mouth. I recently worked with functional medicine dr and eating keto, went off my Lipitor as I felt that was a source of inflammation. A lot of my body inflammation has subsided but my mucousa is still having issues. I do take Dapsone 25 MG and have various Betamethosone ointments for mouth and vagina. Clobetasol solution for scalp. My general outer skin not an issue other than being dry. I went to a new Dermatologist and she is sending me to get checked for lichen schleroderma
I read that polysorbate 60 and 80 can cause a huge histaminic inflammatory response. It was on FB under this topic. Burning mouth syndrome was stopped when I eliminated this toxin. It's in everything-food products especially condiments, shampoos, lotions, toothpaste etc. I now use salt as toothpaste and eliminate the polysorbates to stop burning mouth. Look it up:)
What foods can you eat or not eat
Eliminate gluten, sugar, dairy
Yes I think this is what I’ve got ,,been to the doctor nature path and even went to emergency as the pain was so bad,iam 69 and have done the boric acid now going to try the progesterone cream ,so hope this helps ,,great video
Does apple cider vinegar work?
Hi i live in the uk and to stop using topical creams all the time i use, doublebase gel, stops the itching, and adds moisture, also use pure coconut oil
double base gel?
Ditto😊
@@chellebelle1970 I too have no idea what that is
@@jeanluby4636It is spelt as a single word and is a hydrating gel. Savlon cream works well too.
I have lichen. I am deformed from it. My inner labia have fused to my vaginal walls, and my clitoris is gone, leaving me a hole where the urine is released.
I have been told I need to be careful for possible cancer.
I've been seeing an OBGYN, but should I be seeing a dermatologist?
This disease is pure hell. I have it, and I am also diabetic, so I don't heal well.
Thank you for sharing your experience... While I do not have LS, every woman I know with it would agree 100% with your statement. It's incredibly difficult on multiple levels to deal with
I also have lots of varicose veins underneath
Yes I agree, it is hell.
I have had it for about a yr & was diagnosed by my gyno, I’m also a diabetic too, it’s very painful & depressing. I’m 76 & am a widow so I’m not sexually active, It also has affected my mouth also (lichen planus). It’s the pits. I’m thankful for this channel & others like it.
I was diagnosed recently 😔 it's pure hell .... I'm also diabetic so I agree...this makes me so self conscious 😔😔😔
Burning during urination, and after is one of the symptoms for all??
Yes urine is acidic and burns our sensitive skin. Best to rinse after a bathroom visit.
I (68 years old) was diagnosed with LS within the past two years. When it first started it wasn’t too bad - only a little itching and some pain. Then it went away……until it started to rage about 7 weeks ago. It is awful! It spread into the area were your panty line would be. The elastic in the underwear was rubbing against it, so I sought a solution other than going commando (😂). I ditched my underwear and started to wear my boyfriend’s boxer briefs - sweet relief from the constant friction.Then I searched for women’s boxer briefs (Amazon has bamboo womens boxer briefs and they are so comfortable you don’t even know you’re wearing them.” Thank you for all the suggestions about what works for you. I hope it goes away soon!
Ever since I started using Symbicort for my asthma I developed Lichen Sclerosis. I quit taking it for 2 weeks and Lichen Sclerosis went away. I told my gynecologist about it and she said I've never heard of that. So if anybody is taking an inhaler Even the emergency inhaler for asthma. Check into it.
Very interesting. I have had asthma and allergies my entire life. I’ve ALSO had LS. I’m going to look into this!
This is a very old thread, but I am going to throw this out there. Mine seems to have started during a period of extreme stress. And long term, like.....years. I'm wondering if our own cortisol is wanked out as a cause. Either too high or too low or both after long term stress.
Just thinking out loud.
I am one who has had a partial vulvectomy due to Lichen Sclerosis and the biopsy on the skin that was removed was VIN3 (pre-cancer cells).....I had thought I was allergic to toilet tissue as I had such burning after using. But, I will say that I have an older sister who also has this condition...we are both in our 70s. And we have been told it was an autoimmune disease. I have been treating it with Clobetasol for a couple of years. I am concerned about the affecting my Adrenal system.
It’s not a RASH. It’s autoimmune!
I have used Julva for a couple of years. Several years ago I had a spinach salad for lunch and very shortly after had massive diarrhea and was so dehydrated that I needed two liters of IV fluids. Unfortunately the Maça contains spinach. Dr Anna do you have an alternate for the Maça. I do have lichens sclerosus and have had it life long. I am 76 now. Nothing has really helped. Julva is soothing but not curative. I am gluten free. Any additional suggestions would be appreciated. I had massive hives from clob but use halobestrol. I am followed regularly.
Interesting that you would have a strong reaction to spinach. Many say oxalates are an issue and spinach is one of the highest.
Is it okay to drink kombucha? There is a lot of conflicting information out there
Please say where it came from!! And how to find comfortable solution. NOT a LONG STORY!!!
The shaving situation!!! OR Cholesterol Medicine?? 🙏🙏😊
Possible origins come from hormonal imbalances, Leaky gut, or autoimmune issues.
I have had it for a year now. I am a 48 year old male and have it under my shorts. Its so painful and I get it every 3 months. It hurts to go to the bathroom or to be intimate with my wife.
😔😢
Ola @@Ola-1114
I just found your channel and this disease is debilitating
over 25 years ago .. and having gone from one doctor to another ..I was diagnosed with LS ... add in by that that time, my husband divorced me because of the inability to have intercourse. Here I am now being able to go on You Tube and find out information that I needed years ago. My mind is reeling ... after all these years .. is there any help for me after all these years? I would love to the ability to be intimate.
My gynecologist instructed me not to use anything other than water to wash with water and steroid cream
I had been diagnosed with licchen sclerosis in 2019, biopsy was done by removing all the discoloration of white patches. Its back and it is frustration. Need a clarification, can this disease cause cancer in long term? Clob does not work at all.
it can in 5% cases....=(
@@yanasosnovskaya864 Thank you Yana
There’s one solution and it’s coconut oil. Yes you can absolutely put it down there! It works instant!
I appreciate that this works for you, but there are others who have tried this and do not find it helpful. So it's always important to try different things and see what actually is helpful for the individual
It works instant but it does not fix the problem, I’m putting coconut oil everyday
My gyno said use vaseline at night instead of coconut oil.
Coconut oil makes mine worse
@@MaritzaOrtiz-ib1qd it made mine worse too.
I have it terribly. Lume' cream also helps.
I have the feeling that most women treating this have not gone through the pull hell lichen sclerosus does to you and just when flare up ends, another one can start a day or two later. You can't sit nor stand. Wear pants? No!!!! Every one I have gone for treatment has never had it and many physicians who take down my medical conditions, have NO IDEA how much of a painful this is. I'm truly disgraced that more medical professionals have no idea much less an impact thar it has in their lives much life a ZERO sex life. I want to hear from people who actually have it and be treated by someone who knows firsthand the extreme severity of pain it causes.
I use EMUAID it is a game changer!! No side effects
Carnivore helped me.I found too much tomato,irritates me and sugar.
I have a diff issue,but its not fun either
I had never heard of Pro Biotic and my grand daughter used it I used it. After 6 months I now have LS. Just curious. ???
I have noticed Gluten has a big effect....leaky gut
Does CDB OIL DO ANYTHING TO HEALING LS?
I was just diagnosed of LS but never have itchiness. My only symptom is chronic microscopic blood every time I have UA ( urinalysis) and severe stabbing pain during contact. For years I have been treated from recurrent uti and now I have to bear down when I urinate only at night. Presently I’m now treated with tapering dose of clobetasol and no sex 😂 😢my poor husband!
As a result I've also developed another issue on top of that called Labial adhesion!!! Part of my labia is closed shut revealing only a small area where my vaginal opening is it's very frightening how this happened.. also amazing I'm able to still urinate . That area has not closed off thank god!! ... happened so quickly I don't even really know the timeline but it must have been in a short span of time I want to say sometine inbetween 2 years roughly when I stopped taking my HRT abruptly. I felt something unusual and looked with a mirror and could not believe the horror to see the skin fused shut I have no idea how to fix this problem I went to 2 gyns .. all they recommended was aquaphor ointment.. the other said I should put estrogen on which I did for an entire year daily with know benefit at all ...😭😭😭😭😭 I don't know where to turn with this issue I would like to have it surgically opened but I don't know where to go the skin on my vulva is practically white in color 😯 it's the worst nightmare!!
Zoey...I had the exact same horror as you. Seeing how small my vaginal opening is crushed me. I tried the creams and now I am going to consider surgery. I am 61 and feel I am doomed to being single. Only positive is I haven't been real itchy like before. How are you making out now?
Use topical estrogen cream. Ovestin. Opened me up in 3 weeks.
I have a male friend who has Lichen sclerosis and I was wondering if he can use the same product as women?
I really don't know as it was specifically formulated for women. My guess would be no since hormonal issues are different in women vs men but you could always contact them and ask
@@jenfugo Ok thanks I'll do that!
:)
I have a red light machine. Does red light or infa red have any potential at healing this?
Yes, we actually discuss that here: www.skinterrupt.com/red-light-therapy-skin-rash/
Well, how do we heal the GI tract?
I have been diagnosed with lichen planus on my vulva. Is this the same as sclerosis? My doctor has given a the strongest steroid but iv been suffering for over three years.I’m suffering. Please reply me. Thank you .
Lichen Planus is different and harder to treat. I’ve had it since 2015. I have two gynecologists and one dermatologist who have helped me. I have vulvovaginal lichen Planus. This involves both my vulva and my vagina. I use Clobetesol once a week and Protopic twice a day on the vulva, which was prescribed by the dermatologist, and it has helped me more than anything. I use Anucort suppository in my vagina once a week for the vaginal discharge. This stops the discharge. Seek help from specialists. My regular gynecologist wasn’t very familiar with the problem. It took time to find the right people who can help. Good luck.
Borax soaks may help
A low oxalate diet is what has worked for me. I had fusing when I ate oxalates again.
I want some hope please share stories of patients which recovered from LSA .. my 8 years daughter is suffering from it
Am permanently cured with Dr iyaremoses herbal medicine on youtube thank you doc #driyaremoses channel
What is called the treatment? I understand “jova” I can’t find it on the internet.
Must you have a script for the suppositories to be made a at pharmacy?
In the US, you can get them over-the-counter. They even sell them on Amazon like there a.co/d/dL3zES3
If you try them, please let us know how you make out and if you find them helpful!
@@jenfugo Way back in the 80s when you still needed a doctor's prescription to get Monistat cream, a nurse practitioner way ahead of her time recommended making boric acid suppositories. She had me buy the large-ish size empty gel caps and fill them with boric acid you can get at the pharmacy. A lot cheaper than buying them.
I had several rounds of antibiotics around that time and always seemed to be dealing with a yeast infection. This was before most doctors understood antibiotics cause yeast overgrowth.
Anyway - the boric acid worked like a charm. She advised one at night as a suppository for 7 nights. Then every other night for another week. Then every 3rd night the third week.
I have also used boric acid with great success for a ringworm infection on my leg. Tried everything - things like iodine etc. But the boric acid dried it up within 24 hours.
Boric seems to be great for anything fungal. Works for dog mange too.
Makes me wonder if LS is fungal. Some on this site commented that getting off of sugar and carbs helped.
I've been dependent on PPIs due to eosinophilic esophagitis and wonder if it has contributed to the development of LS
I'm new to LS, but I'm growing to be convinced that the gut has a lot to do with it.
PPIs scare me because you stop digesting your food from low stomach acid. I am concerned every time I see someone on them. All alternative docs say you need MORE acid. I guess that sphincter muscle between the esophagus and stomach doesn't close tightly unless the stomach acid is HIGH.
Dr Ben Edwards, who collaborates with Morley Robbins, has people take HCL as a supplement for this and has had great success. I believe Dr Edwards has a vid or podcast about it.
Anyway, yeah, I'm thinking it could contribute. But...I'm just a nobody, basically.
Are you still given advice
Everyone in this chat should be looking into their liver. DDT settles below the waste in the lymphatic system. Which can show up as ls
can you recommend specific tests to find out?
@@RainBow-uf7hb only research studies.. but best to just assume your grandmother was exposed to ddt and we are exposed to Pfas, bpa, mercury and copper all which wreak havoc below the waste
What is DDT?
Several ingredients in Julva have alcohol. Wouldn’t that burn already irritated skin? Anyone on here used it?
What is “julva” mentioned around minute 18? Thank you for this so so much
Julva is a cream for the vaginal area. You can Google it and find out more about the product
@@jenfugo is it okay if it causes some burning? I’m trying to use julva but it’s burning.
I did not know what l had until l heard this!! Had nothing to help it. It’s soooo painful once it gets going. All l could do is wear loose clothes and ice it. I want to buy the cream, where can l get it??!!!!!!!!!
Check out the video description! The cream is linked up in there 👍
I guess I'm doomed. I have Ls, thyroid disease, shingles, and diverticulitis...😮
I'm sorry to hear that you're dealing with all of that, Deborah. Maybe just starting to work on one area to improve health overall could be helpful because sometimes too many things can feel overwhelming. It sounds like you've got several gut related things so maybe start there 💛
I understand how you feel...Investigate auto immune improvement.
How young can you be when you get this.
Unfortunately this can occur even in children. It's best to see a doctor and get a diagnosis
Is a biopsy of the vulva painful? I’ve had lichen sclerosis for about 1 yr. & it’s very troublesome.
The biopsy only hurt when the shot me up with numbing agent. And then when it was healing.
Why do you want a biopsy if you know you have it??
@@lindacaldwell6251so she can rule out cancer
Biopsy felt like a pinch..not bad...good luck !!❤❤
Estrogen inserts for naturalpath really help... I mean, most women get it in old age
Hi! Thank you for this! I know I have a yeast issue, so I'll be trying the boric acid suppositories. I just had a hysterectomy at 49 due to endometrial cancer, so I can't do estrogen anything. I'm wondering if the julva is a no for me. I know it doesn't have estrogen, but maybe it's a no go because it sounds like it would stimulate my body's production of estrogen.... any thoughts? Thank you!
I really can't say. I'd recommend contacting Julva and asking them directly and then running the ingredients past your physician.
Don’t try boric acid!!! I tried it and I had bleeding from it (before I had the hysterectomy). I don’t know what the best solution is yet but I will not do boric acid ever again!!!
@@Jesus-is-the-only-WaytoHeaven I use boric acid regularly and find it fantastic.
@@TB-yx5of glad it works for you! It made me bleed!! I don’t find it safe for myself but we all have our own ways to discover. I seek guidance from the Holy Spirit to show/confirm what solutions are right for me.
If I start on something that’s not right-if I forgot to pray to Him about it first!-He shows/confirms to stop or not. When I have peace about something, that is sometimes a confirmation sign. But I read the Bible (Proverbs has a lot of advice), praise God (listen and sing to Christian music with lyrics on UA-cam) and with thanksgiving, pray to God for direction. He NEVER fails to answer in various ways!
1 Corinthians 1:24
24 but to those whom God has called, both Jews and Greeks, Christ the power of God and the wisdom of God.
Commit to the Lord whatever you do, and he will establish your plans.
Proverbs 16:3
I Google different verses and questions on all kinds of topics. This one was also helpful about wisdom in general!
www.gotquestions.org/fear-Lord-beginning-wisdom.html
God loves us and cares about our lives and health here and whether we go to heaven or hell once we leave!
““For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life. For God did not send the Son into the world to judge the world, but that the world might be saved through Him. He who believes in Him is not judged; he who does not believe has been judged already, because he has not believed in the name of the only begotten Son of God. This is the judgment, that the Light has come into the world, and men loved the darkness rather than the Light, for their deeds were evil. For everyone who does evil hates the Light, and does not come to the Light for fear that his deeds will be exposed. But he who practices the truth comes to the Light, so that his deeds may be manifested as having been wrought in God.””
John 3:16-21 NASB1995
bible.com/bible/100/jhn.3.16-21.NASB1995
God bless you and your family and merry Christmas!! ✝️❤️🙏🏻
I have it too… had it for 30 years. Nightmare.
😢😢😢
consider eliminating sugar & gluten...Iam going gluten free from now on. diabetes seems to be a comorbid condition
This really helped me!Good Luck to you🍀
My doctor prescribed a steroid cream. But after reading the harm they cause I don't want to it.
I've found that topical vitamin D3, which psoriasis sufferers advocate, and prescription tacrolimus, help a lot. As per studies topical D3 help prevent a lot of the angiogenesis caused by the topical steroids. There are people that have a bad reaction to the D3 too, but it seems rare from all that I've read. PRP injections resulted in a 2 year remission for me.
The brand of D3 i used is called Maxasorb. Its on a mazon.
@@Bshipbuilder did you see that I did a podcast episode all about Topical vitamin D? www.skinterrupt.com/vitamin-d-supplement-skin-rash/
@@jenfugo I'll check it out.
@@Bshipbuilder qwwwwwwwwqqwqqqqqq
Emu oil works fine for this condition, but beware of fake emu products
Go for keto diet
Intake of vitamin b and c is good
Turmeric with coconut oil n teatree oil
N 1:1 of vinegar and water for applications
The autoimmune paleo diet,finding a functional medicine doctor who put me on vitamins and HRT,and 3 Thermiva treatments done by a gynecologist helped me to achieve remission.Ive been in remission for over 7 years🎉
Dr. Nathan Newman has treated over 200 LS patients with 100% using stem cell PRP therapy. He’s a dermatologist in Beverly Hills California. He has a website, UA-cam channel and check out his yelp
I'll just use vit D3 topical/oral, and homeopathy
What homeopathy do you use? I am visiting a homeopath and it is trial and error at the moment.
@@jobenson736 the best way is dowsing for your remedy/potency/doses
By dowsing " you mean witchcraft".
@@robertmccabe8632 homeopaths use dowsing. Idk the concept of witchcraft that you have, but dowsing works with ideomotor response just like kinesiology.
did u heal by homeopathy
Where can I find juva???
Have you tried searching the internet?
@@cognossance Julva is on the doctor's website, but it costs about $70
What makes me furious is that insurance won’t pay for laser treatments becuz it’s considered cosmetic. I am just disgusted..I’m trying hormonal cream now and insurance won’t pay for that either..😊
@@Silva007ish YEA WE HEAR YOU!!!!