Thank you so much for this; and all you do. I’m newly diagnosed, & realizing (with some horror) the extent of what I’m dealing with. You’ve been a God send. I hope to have a session w you soon. Thank you again.
Please don’t apologize for “another thing.” I want as many another things as possible. This advice is priceless and NOT to be found with the medical establishment in my experience. Many thanks!
Someone in remission for so long and could be doing other things it’s appreciated you dedicate so much time to these excellent videos. Thank you for your commitment to helping others.
What works for me: Daily use of emollients, #2 major diet change - no sugar, no fruits, small amounts of non starchy vegetables, no gluten, no processed foods ( I now make everything from scratch) Hormone vaginal cream (estradiol) I never miss using it (3x week) The last flare up I had was severe. severe. severe - it happened after I ate sugar free organic natrual peanut butter, and I also had a few teaspoons of sugar free Jelly (note even sugar free jellys have sugar from the fruit itself) I mainly eat beef, lamb, shrimp, salmon, liver, eggs, and hard cheeses. It's been about 6 weeks since I got back into remission. I hope this continues to work.
Hi, Tango. Thank you so much for sharing what works for you. You never know who will read this and who it will help! Crossing my fingers for you that you continue to stay in remission. With love, Jaclyn
I just found your channel , I’ve been binge watching your videos Excellent information, I’m learning so much about this disease, Thank you so much 😊 🌞🌹
Thank god I found your channel! This video was so helpful. Can you make a video on pregnancy and giving birth? I’m 25 and I‘be always dreamed of having a home birth but since this LS hit I’m thinking that won’t be possible. But I can’t find any information on it at all. Thank you!
Yes, absolutely! I have a blog post on this planned in a couple of months for Lichen Sclerosus Support Network and will do videos on their channel in the future. Be sure to subscribe to LSSN's TH-cam, as all my content is now being featured over there - th-cam.com/channels/MCwP8rMVSvZRFRyI3IChVA.html?app=desktop . With love, Jaclyn!
Hello again Jaclyn. This was very helpful and I think I'm going to check out Penny's pelvic yoga. Thanks for all your honesty, instructions and information to help LS (mentally and physically). Have a great day!
Hi, Louise! Thank you for watching and taking the time to leave a comment. I appreciate you so much. If you do sign up for Penny's membership, use this link well-being-by-penny-s-school.teachable.com/?affcode=848302_qg_-pve8 and code JACLYN for 30% off your first month. Let me know if you join and what practices you enjoy:)
Hi! Thank you for your comment and for watching my videos. An electric trimmer is preferred over shaving. Shaving can really aggravate the skin, and most people with LS have issues with shaving. So a trimmer can be a good option. You can also consider sugaring, with is less abrasive to the skin
@@thelostlabiachronicles thanks so much for your quick response. I thought I better see before shaving. It’s been awhile. I will also look into the other method you mentioned. I had itching that didn’t go away, my Dr had a look and said everything looked good I caught it in time. Told me to use the clob twice a day just for 14 days. I think I will take your advice and try the pelvic floor therapy also. Thank you
Hello, I love your site, it help me alot with all the questions I had and that you practically answered all. But there is one that I would like to know, I am 65 and I had LS since I believe 2018 after menopause. I'm starting dating and it is very recent, nothing happened yet but we are both very attracted to each other. I am going for laser treatment soon (don't have my labia minora, completely resolved and my clito is hooded) I am in remission at the moment . I have been diagnosed in Dec 2022 and started clobetasol for vulva and estragyn for the vagina. Now I am worried that my partner freaks out when he sees my vagina w/o the labia minora, I don't know how to tell someone that you are stated dating about your private problems.
Hello I have suspected I have this for close to a year and haven't gone to a doctor as I have lived in Tunisia for the last 4 yrs almost 5 and I'm not in usa anymore and finding a doctor that speaks english hard here and my limited arabic won't help and my husband won't be back till december from usa from work I just found I had the medicine that is used to treat this here at home from my husband trip to doctors for some rash I think they gave it to him I applied it and going to hope the itching and cuts and fissures stop and try to find a doctor in the mean time because the tube is very small it will only last a a week 2 at most wish me luck and I'm glad I found your videos
Hi, Angelic Hamdi! I appreciate you watching and taking the time to comment. That sounds like such a tough situation - I'm so sorry it's so difficult for you to access quality healthcare. I hate that you cannot access the medication you need because it's fundamental for managing and slowing the progression of the disease. In the meantime, be sure to use an emollient, manage stress, etc.
Hi Angelic--I know it is many months since you sent this message, but I appreciate your plight. I've also lived overseas and had the same sort of problem getting back to the states to see doctors. However, since covid, a lot of them will see you via a webmeet. You might consider seeing if there is someone who could do this from overseas or if there was an English-speaking doctor in a bigger city in Tunisia. If you are so inclined, you might be able to obtain the meds from a pharmacy there--just take in your present tube and see if they'll sell you another. I've found many overseas pharmacists will even sell meds without a prescription. Sorry--don't want to be seen as practicing medicine here. 'Just sharing what I've had to do in the past to care for myself when abroad. I do hope you've been able to find relief!
Interesting tools, not my tools but, everyone is diff. Interesting stuff tho. Goona look into pelvic floor stuff and pf yoga. ❤ im huge on diet. I use clob like 5 times a yr. Lol im aip, mostly. But i can eat whatever, but i like to eat well for me. Yes im in remission, been a few yes. Getting my 11 yr old rhere too, using aip and clob for her. I also give glory to God for my healing. ❤ thanks again
Totally, we are all different and this is just what I do. But LS is super individualized, which means different things will work for different people. I love that AIP is working for you. Aw, does your 11-year-old have LS too? I have heard great things about AIP. I don't follow it because I'm vegan, and because other methods got me happy and healthy, but I know many who find their LS is triggered by foods and especially folks with multiple AI conditions who benefit from AIP and other diets.
Well LS is in your genes and it is hereditary and given the right environment in the gut it will come in to the pic. That’s how she got it. She got super constipated and stressed out about it for about a month and then it appeared. I knew exactly what it was. I’ve got her almost into remission it’s taking about two years. Yeah AIP just works for us were using it as a template though I’ve been on this journey for over 10 years so I eat a lot of foods now but she cannot. Yeah we are all very different. I used to be vegan in fact I was a raw vegan that is when my LS appeared when I was eating fruit all day long • but what works for one just doesn’t work for the next • thank you for your channel! I look forward to binging it some more and looking into this pelvic floor yoga stuff I see you on Instagram and this Penny chick as well. I’m following thank you!
Thank you once again! As always, so helpful and sincere xx I get days of feeling better, but that's it. I think I need to be more consistent with my emollient, and other things of course 😅 with regards to diet, I am so confused. But I definitely need to make healthier options food wise
Hi, Joanne! Thanks as always for your continued support. I appreciate you. With respect to food, have you ever noticed certain foods make your symptoms flare or at least get a bit worse?
@@joannebonello6003 Ohhhh, yeah that makes sense. Many folks say their symptoms worsen our flare around their period, which could be due to the drop in estrogen prior to menstruating, the blood, diet changes around that time, etc. What do you normally crave?
There is unfortunately no research on this in the context of lichen sclerosus, so it's hard to say. Diet doesn't seem to have any impact on my LS; I've been in remission for over two years and a half and I can eat literally everything. That said, some folks feel there is a connection between diet and LS - if you want to learn more, I recommend checking out one of our core content pieces by Heath Cooan on our website www.lssupportnetwork.org/lsdiet and subscribing to our TH-cam channel as well as there are some videos on diet and LS there (not mine since there's no research for me to draw on and no lived-experience). All of my 2023 videos can be found on LSSN's channel at www.youtube.com/@lichensclerosussupportnetwork. Thank you so much for watching and taking the time to comment; I appreciate you!
One more !!! my white plaques are huge now and growing more each month... i was told for years it was just vitiligo... whats the difference? and if i have white plaques (more and more) does this mean im more sick? I just got diagnosed and am scared. thank you !! xxx
Hmm. Were you diangosed with LS via biopsy? Where you diagnosed with vitiligo via biopsy? The main difference is vitiligo is just skin discoloration and it won't hurt, itch, or come with any symptoms, whereas LS is (typically) symptomatic. How long have you been using your steroid for if you were diagnosed with LS? Typically, skin discoloration takes the longest to resolve and can take months of steroid use to start to see a difference.
thank you sooo much !!!! I know his is weird but do some people have a "normal" sex life for most of their life even with diagnosis? Aslo any research on stem cell injections? and lastly what about prednisone ? (pills?) thank you !xxx
Hey, Amelie! Beautiful name. And yes, some people do have "normal" sex lives with LS. Some people with LS are actually asymptomatic, so they don't have pain or issues with sex. Other have itch, but no pain with sex. And some have pain with sex like me, but worked hard to regain their sex life and did. It took me time and work but I know have better sex than ever before! There isn't much quality research on stem cells specifically for LS - did you watch my video on platelet rich plasma? Prednisone is an oral, systemic steroid that most people try to avoid; oral steroids are usually only prescribed for LS for extremely severe cases that are determined by specialists.
I wasn’t shown where to put the Clobetasol, is it all of the soft/shiny skin, just where the white patches occur…wondering if I need to be putting it on the hood to prevent fusing or disappearing (I think that is what is happening). Just got diagnosed and my doctor moved and waiting to see a new provider but obviously very nervous and not wanting to wait that long to ask.
Hi, Bobbiejean! Thank you so much for watching and taking the time to comment. The steroid is safe to apply to the whole vulva if you have LS. That said, it is always best to ask your doctor to show you exactly where they want you putting it. Some doctors will have you concentrate more or certain areas. When see finally see the next doctor, print out an image of a vulva and ask them to draw on the diagram where they want you applying. I apply to the clitoral area, the labia minora, and the perineum. I do not put any on the labia majora simply because I've never had any signs or symptoms there. But I apply to the areas I've mentioned 2x a week for maintenance, despite the fact that I no longer have symptoms or signs there.
Do you know anything about laser hair removal? I was going for it and just got pre diagnosed with LS and now don't know what to do. I'm going to see the doctor again, however would love to know your opinion if you have any experience with that.
Laser hair removal is one of the safer ways to remove hair with LS. That said, do not get this done if you are in an active flare, or if you have any open sores, cuts, tears, fissures, etc. I got lasered well before I was diagnosed with LS, and now I just do sugaring every 4 months or so just for maintenance. With love, Jaclyn
Hey, Lisa. Thanks for watching and commenting. Unfortunately, I'm not well versed in HPV and can't really give advice on that. With AI, though, the immune system is typically overactive, so you wouldn't need to be waking it up at all.
@@Smokillo Calm down the nervous system and immune response? For LS, using your treatment plan is a given, but another thing that can help calm the nervous system is stimulating the vagus nerve. You can look for ways to do this online, or you can get my stress and LS webinar on sale on my website at www.lostlabia.com/stresswebinar (in that webinar I teach the ways stress can impact your LS, how stress impacts your nervous system, and how to stimulate the vagus nerve to help better manage symptoms and get into remission quicker, in addition to whatever your treatment plan is).
diagnosed 30 years ago, never had any treatment bcuz I REFUSED dangerous steroids offered. I have solved my LS using Clotrimazole 1% cream. I have None of the problems most suffer with. I use clotrimazole every few months for a few days if I get a flare in itching (if I eat a lot of dairy or sugar/carbs), in between I use castor oil at night. Problem solved. Try thinking outside the AMA box!
Who first used the words "gold standard" when discussing steroid cream/ointment. When I keep hearing that term repeated by numerous speakers on LS videos it makes me wonder. Are they just repeating what the other says.
Here are my citations for using this term, although, I've seen it cited in many other publications as well: Corazza M, Schettini N, Zedde P, Borghi A. Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects. Biomedicines. 2021; 9(8):950. doi.org/10.3390/biomedicines9080950 Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women's Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240. Almost every LS expert I've heard give a talk uses this term too. I can't tell you who the first person was to use it or track it's history, but I suspect it's used now within the medical community because there is global consensus that steroids are the most effective (overall) and unmatched in their ability to reduce inflammation and should be first line treatment in *most* but not all cases.
LS can affect the genital and extra genital skin, although it most commonly affects the genitals. But you can definitely get LS elsewhere on the body, (I have heard of chest, abdomen, thighs, etc). That really sucks that it is affecting your face, I'm so sorry - how are they treating you for that?
@@thelostlabiachronicles It spread because my bf touched me "down there" and then touched my face, but thankfully it just gets slightly reddish and the texture feels a bit more rough, nothing really noticable. I haven't used much for my face besides coconut and avocado oil. I don't want to put clobetasol on my face because I don't want cosmetic damages.
@@Smokillo So LS isn't contagious and it doesn't spread like a typical rash. Red is usually not indicative of LS; LS typically presents as white. Did you have a dermatologist confirm it was LS?
@@thelostlabiachronicles Thanks for replying! Yes, that's exactly what I was thinking, how can a immune system response, which is what LS is supposed to be, just spread by touch? Doesn't make sense. I haven't had any confirmation, my GYN said to do a biopsy but I'm scared I've never done that, worried about it being painful.
@@Smokillo She wants to biopsy your face? I mean, technically, biopsy is the only way to get 100% confirmation, and since it doesn't sound like classic LS, it might be the only way to know. Since it's on your face, perhaps you can get a dermatologist to look at it?
Thank you so much for this; and all you do. I’m newly diagnosed, & realizing (with some horror) the extent of what I’m dealing with. You’ve been a God send. I hope to have a session w you soon. Thank you again.
Please don’t apologize for “another thing.” I want as many another things as possible. This advice is priceless and NOT to be found with the medical establishment in my experience. Many thanks!
Hi, Sage! Haha, OK, fair enough! I guess that's the Canadian in me coming out with the apologies, haha! Thank you so much for your support
Someone in remission for so long and could be doing other things it’s appreciated you dedicate so much time to these excellent videos. Thank you for your commitment to helping others.
What works for me: Daily use of emollients, #2 major diet change - no sugar, no fruits, small amounts of non starchy vegetables, no gluten, no processed foods ( I now make everything from scratch) Hormone vaginal cream (estradiol) I never miss using it (3x week) The last flare up I had was severe. severe. severe - it happened after I ate sugar free organic natrual peanut butter, and I also had a few teaspoons of sugar free Jelly (note even sugar free jellys have sugar from the fruit itself) I mainly eat beef, lamb, shrimp, salmon, liver, eggs, and hard cheeses. It's been about 6 weeks since I got back into remission. I hope this continues to work.
Hi, Tango. Thank you so much for sharing what works for you. You never know who will read this and who it will help! Crossing my fingers for you that you continue to stay in remission. With love, Jaclyn
Hi Jacklyn, thanks for the video. Please keep doing these videos. I learn more here than through my doctor. Your hits and tips are fantastic.
Aw, thank you so much Sharon. I appreciate you! I will keep it up. Thanks for your encouragement. I'm glad my tips are helpful.
Thank you so very much!!!! You really help so many!!! ❤❤
I just found your channel , I’ve been binge watching your videos Excellent information, I’m learning so much about this disease, Thank you so much 😊 🌞🌹
Hi, Robin! Thank you so much. You're incredibly kind. Happy to be able to share some important information with the LS community. I appreciate you
Thank god I found your channel! This video was so helpful. Can you make a video on pregnancy and giving birth? I’m 25 and I‘be always dreamed of having a home birth but since this LS hit I’m thinking that won’t be possible. But I can’t find any information on it at all. Thank you!
Yes, absolutely! I have a blog post on this planned in a couple of months for Lichen Sclerosus Support Network and will do videos on their channel in the future. Be sure to subscribe to LSSN's TH-cam, as all my content is now being featured over there - th-cam.com/channels/MCwP8rMVSvZRFRyI3IChVA.html?app=desktop . With love, Jaclyn!
Hello again Jaclyn. This was very helpful and I think I'm going to check out Penny's pelvic yoga. Thanks for all your honesty, instructions and information to help LS (mentally and physically). Have a great day!
Hi, Louise! Thank you for watching and taking the time to leave a comment. I appreciate you so much. If you do sign up for Penny's membership, use this link well-being-by-penny-s-school.teachable.com/?affcode=848302_qg_-pve8 and code JACLYN for 30% off your first month. Let me know if you join and what practices you enjoy:)
Hi Jacqueline, do you use soaps?
Is it better to shave or use a electrical shaver? Thanks for all your informative vudeos❤
Hi! Thank you for your comment and for watching my videos. An electric trimmer is preferred over shaving. Shaving can really aggravate the skin, and most people with LS have issues with shaving. So a trimmer can be a good option. You can also consider sugaring, with is less abrasive to the skin
@@thelostlabiachronicles thanks so much for your quick response. I thought I better see before shaving. It’s been awhile. I will also look into the other method you mentioned. I had itching that didn’t go away, my Dr had a look and said everything looked good I caught it in time. Told me to use the clob twice a day just for 14 days. I think I will take your advice and try the pelvic floor therapy also. Thank you
Hello, I love your site, it help me alot with all the questions I had and that you practically answered all. But there is one that I would like to know, I am 65 and I had LS since I believe 2018 after menopause. I'm starting dating and it is very recent, nothing happened yet but we are both very attracted to each other. I am going for laser treatment soon (don't have my labia minora, completely resolved and my clito is hooded) I am in remission at the moment . I have been diagnosed in Dec 2022 and started clobetasol for vulva and estragyn for the vagina. Now I am worried that my partner freaks out when he sees my vagina w/o the labia minora, I don't know how to tell someone that you are stated dating about your private problems.
Hello I have suspected I have this for close to a year and haven't gone to a doctor as I have lived in Tunisia for the last 4 yrs almost 5 and I'm not in usa anymore and finding a doctor that speaks english hard here and my limited arabic won't help and my husband won't be back till december from usa from work I just found I had the medicine that is used to treat this here at home from my husband trip to doctors for some rash I think they gave it to him I applied it and going to hope the itching and cuts and fissures stop and try to find a doctor in the mean time because the tube is very small it will only last a a week 2 at most wish me luck and I'm glad I found your videos
Hi, Angelic Hamdi! I appreciate you watching and taking the time to comment. That sounds like such a tough situation - I'm so sorry it's so difficult for you to access quality healthcare. I hate that you cannot access the medication you need because it's fundamental for managing and slowing the progression of the disease. In the meantime, be sure to use an emollient, manage stress, etc.
Hi Angelic--I know it is many months since you sent this message, but I appreciate your plight. I've also lived overseas and had the same sort of problem getting back to the states to see doctors. However, since covid, a lot of them will see you via a webmeet. You might consider seeing if there is someone who could do this from overseas or if there was an English-speaking doctor in a bigger city in Tunisia. If you are so inclined, you might be able to obtain the meds from a pharmacy there--just take in your present tube and see if they'll sell you another. I've found many overseas pharmacists will even sell meds without a prescription. Sorry--don't want to be seen as practicing medicine here. 'Just sharing what I've had to do in the past to care for myself when abroad. I do hope you've been able to find relief!
Thank you so much for sharing
My pleasure. Thank you so much for watching and taking the time to comment; I appreciate you!
Thanks for this! ❤
My pleasure! Thank you for watching.
Interesting tools, not my tools but, everyone is diff. Interesting stuff tho. Goona look into pelvic floor stuff and pf yoga. ❤ im huge on diet. I use clob like 5 times a yr. Lol im aip, mostly. But i can eat whatever, but i like to eat well for me. Yes im in remission, been a few yes. Getting my 11 yr old rhere too, using aip and clob for her. I also give glory to God for my healing. ❤ thanks again
Totally, we are all different and this is just what I do. But LS is super individualized, which means different things will work for different people. I love that AIP is working for you. Aw, does your 11-year-old have LS too? I have heard great things about AIP. I don't follow it because I'm vegan, and because other methods got me happy and healthy, but I know many who find their LS is triggered by foods and especially folks with multiple AI conditions who benefit from AIP and other diets.
Well LS is in your genes and it is hereditary and given the right environment in the gut it will come in to the pic. That’s how she got it. She got super constipated and stressed out about it for about a month and then it appeared. I knew exactly what it was. I’ve got her almost into remission it’s taking about two years. Yeah AIP just works for us were using it as a template though I’ve been on this journey for over 10 years so I eat a lot of foods now but she cannot. Yeah we are all very different. I used to be vegan in fact I was a raw vegan that is when my LS appeared when I was eating fruit all day long • but what works for one just doesn’t work for the next • thank you for your channel! I look forward to binging it some more and looking into this pelvic floor yoga stuff I see you on Instagram and this Penny chick as well. I’m following thank you!
Thank you once again! As always, so helpful and sincere xx I get days of feeling better, but that's it. I think I need to be more consistent with my emollient, and other things of course 😅 with regards to diet, I am so confused. But I definitely need to make healthier options food wise
Hi, Joanne! Thanks as always for your continued support. I appreciate you. With respect to food, have you ever noticed certain foods make your symptoms flare or at least get a bit worse?
@@thelostlabiachronicles well it's always before my period...even my cravings get worse....so I think it's a mixture of both
@@joannebonello6003 Ohhhh, yeah that makes sense. Many folks say their symptoms worsen our flare around their period, which could be due to the drop in estrogen prior to menstruating, the blood, diet changes around that time, etc. What do you normally crave?
@@thelostlabiachronicles oh all the things that are not so good fur us! Sugar and processed foods!
@@joannebonello6003 Ah yes, of course, lol. Sugar doesn't affect me, but I've heard that can be super triggering for many with LS.
What do you think of low inflammatory diet? Does it make a difference?
There is unfortunately no research on this in the context of lichen sclerosus, so it's hard to say. Diet doesn't seem to have any impact on my LS; I've been in remission for over two years and a half and I can eat literally everything. That said, some folks feel there is a connection between diet and LS - if you want to learn more, I recommend checking out one of our core content pieces by Heath Cooan on our website www.lssupportnetwork.org/lsdiet and subscribing to our TH-cam channel as well as there are some videos on diet and LS there (not mine since there's no research for me to draw on and no lived-experience). All of my 2023 videos can be found on LSSN's channel at www.youtube.com/@lichensclerosussupportnetwork. Thank you so much for watching and taking the time to comment; I appreciate you!
One more !!! my white plaques are huge now and growing more each month... i was told for years it was just vitiligo... whats the difference? and if i have white plaques (more and more) does this mean im more sick? I just got diagnosed and am scared. thank you !! xxx
Hmm. Were you diangosed with LS via biopsy? Where you diagnosed with vitiligo via biopsy? The main difference is vitiligo is just skin discoloration and it won't hurt, itch, or come with any symptoms, whereas LS is (typically) symptomatic. How long have you been using your steroid for if you were diagnosed with LS? Typically, skin discoloration takes the longest to resolve and can take months of steroid use to start to see a difference.
thank you sooo much !!!! I know his is weird but do some people have a "normal" sex life for most of their life even with diagnosis? Aslo any research on stem cell injections? and lastly what about prednisone ? (pills?) thank you !xxx
Hey, Amelie! Beautiful name. And yes, some people do have "normal" sex lives with LS. Some people with LS are actually asymptomatic, so they don't have pain or issues with sex. Other have itch, but no pain with sex. And some have pain with sex like me, but worked hard to regain their sex life and did. It took me time and work but I know have better sex than ever before! There isn't much quality research on stem cells specifically for LS - did you watch my video on platelet rich plasma? Prednisone is an oral, systemic steroid that most people try to avoid; oral steroids are usually only prescribed for LS for extremely severe cases that are determined by specialists.
I wasn’t shown where to put the Clobetasol, is it all of the soft/shiny skin, just where the white patches occur…wondering if I need to be putting it on the hood to prevent fusing or disappearing (I think that is what is happening). Just got diagnosed and my doctor moved and waiting to see a new provider but obviously very nervous and not wanting to wait that long to ask.
Hi, Bobbiejean! Thank you so much for watching and taking the time to comment. The steroid is safe to apply to the whole vulva if you have LS. That said, it is always best to ask your doctor to show you exactly where they want you putting it. Some doctors will have you concentrate more or certain areas. When see finally see the next doctor, print out an image of a vulva and ask them to draw on the diagram where they want you applying. I apply to the clitoral area, the labia minora, and the perineum. I do not put any on the labia majora simply because I've never had any signs or symptoms there. But I apply to the areas I've mentioned 2x a week for maintenance, despite the fact that I no longer have symptoms or signs there.
@@thelostlabiachronicles printing a pic!! This is a great idea, thank you!
@@wallawallawhale Happy to help :D
Do you know anything about laser hair removal? I was going for it and just got pre diagnosed with LS and now don't know what to do. I'm going to see the doctor again, however would love to know your opinion if you have any experience with that.
Laser hair removal is one of the safer ways to remove hair with LS. That said, do not get this done if you are in an active flare, or if you have any open sores, cuts, tears, fissures, etc. I got lasered well before I was diagnosed with LS, and now I just do sugaring every 4 months or so just for maintenance. With love, Jaclyn
@@thelostlabiachronicles Thank you so much for replying, dear. Have a lovely week!
So if LS is an autoimmune disease how can I wake my immune system up again and make my body get rid of hpv as well as helping the LS please X
Hey, Lisa. Thanks for watching and commenting. Unfortunately, I'm not well versed in HPV and can't really give advice on that. With AI, though, the immune system is typically overactive, so you wouldn't need to be waking it up at all.
@@thelostlabiachronicles so how can we calm it down?
@@Smokillo Calm down the nervous system and immune response? For LS, using your treatment plan is a given, but another thing that can help calm the nervous system is stimulating the vagus nerve. You can look for ways to do this online, or you can get my stress and LS webinar on sale on my website at www.lostlabia.com/stresswebinar (in that webinar I teach the ways stress can impact your LS, how stress impacts your nervous system, and how to stimulate the vagus nerve to help better manage symptoms and get into remission quicker, in addition to whatever your treatment plan is).
diagnosed 30 years ago, never had any treatment bcuz I REFUSED dangerous steroids offered. I have solved my LS using Clotrimazole 1% cream. I have None of the problems most suffer with. I use clotrimazole every few months for a few days if I get a flare in itching (if I eat a lot of dairy or sugar/carbs), in between I use castor oil at night. Problem solved. Try thinking outside the AMA box!
Who first used the words "gold standard" when discussing steroid cream/ointment. When I keep hearing that term repeated by numerous speakers on LS videos it makes me wonder. Are they just repeating what the other says.
Here are my citations for using this term, although, I've seen it cited in many other publications as well:
Corazza M, Schettini N, Zedde P, Borghi A. Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects. Biomedicines. 2021; 9(8):950. doi.org/10.3390/biomedicines9080950
Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women's Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240.
Almost every LS expert I've heard give a talk uses this term too. I can't tell you who the first person was to use it or track it's history, but I suspect it's used now within the medical community because there is global consensus that steroids are the most effective (overall) and unmatched in their ability to reduce inflammation and should be first line treatment in *most* but not all cases.
Do you apply twice a week am and pm or jusi one time a day vs am and pm two days a week?
Hi, Sandy. Thanks for watching and commenting. I appreciate you
Have you ever heard of the LS spreading to the face? Cuz it happened to me
LS can affect the genital and extra genital skin, although it most commonly affects the genitals. But you can definitely get LS elsewhere on the body, (I have heard of chest, abdomen, thighs, etc). That really sucks that it is affecting your face, I'm so sorry - how are they treating you for that?
@@thelostlabiachronicles It spread because my bf touched me "down there" and then touched my face, but thankfully it just gets slightly reddish and the texture feels a bit more rough, nothing really noticable. I haven't used much for my face besides coconut and avocado oil. I don't want to put clobetasol on my face because I don't want cosmetic damages.
@@Smokillo So LS isn't contagious and it doesn't spread like a typical rash. Red is usually not indicative of LS; LS typically presents as white. Did you have a dermatologist confirm it was LS?
@@thelostlabiachronicles Thanks for replying! Yes, that's exactly what I was thinking, how can a immune system response, which is what LS is supposed to be, just spread by touch? Doesn't make sense. I haven't had any confirmation, my GYN said to do a biopsy but I'm scared I've never done that, worried about it being painful.
@@Smokillo She wants to biopsy your face? I mean, technically, biopsy is the only way to get 100% confirmation, and since it doesn't sound like classic LS, it might be the only way to know. Since it's on your face, perhaps you can get a dermatologist to look at it?