If you have found this channel - you should watch all of her videos. I was misdiagnosed for 15 years to finally be correctly diagnosed in February 2024 as I was also diagnosed with Squamous cell Carcinoma most likely caused by untreated Lichen Sclerosis. My tumor is inoperable- and lay my life in the hope chemo and radiation works for me. Please demand answers from your doctors- do not accept their easy answers! Get the treatment you need.
I cured myself with Vit E oil, cotton panties and panty liners, Activia, brown seaweed, Omega 3 and 7. The Vit E oil seems to be what cured me and in 6 months zero issues. I was diagnosed via biopsy. Good luck to everyone.
I'm glad you found what worked for you. Unfortunately, there is no cure for LS yet. It can go into remission (I've been in remission for almost three years & no symptoms) but it cannot be cured. With love, Jaclyn
Just watched first video. So good to see such a kind and caring human face explaining so carefully and thoroughly. Thank you for all the hard work you have put into research and sharing of your knowledge.
You’ve given me hope. Thank you. I am in my mid 60s with this diagnosis and i can’t imagine being diagnosed with this as young as yourself. I also received the “it’s no big deal” vibe after diagnosis with no follow-up appointment even scheduled. It is critical to find a doctor, preferably a specialist in gynecological disease that takes the condition seriously, as well as do our own homework. You are doing a great service much needed!
Hi, Sage! Thank you so much for watching and taking the time to comment. Yes, exactly! So many doctors tell patients, it's a skin thing, use the steroids and that's it. But when you make it seem like no big deal, many patients opt to ignore it (I've spoken to more than a handful of folks who did this only for it to progress viciously later). Amen, find a good doctor, do your own research! Good advice
@@thelostlabiachronicles My daughters LS was misdiagnosed for decades,she was treated for thrush,the constant itching sent her into a meltdown,ling story short,at36 she was diagnosed with Vulval cancer at 37,it spread to her cervix, she had her lymph nodes remo6,partial vulvectomy,I thought I'd just put it out there😢😢😢
I am on doctor 4 supposedly this time its nerve pain. There are many different type of skin conditions why we have all this discomfort. Most doctors just try a bunch of things when nothing works we're on our own. Now gabapentin so far no change. Yes, all extremely frustrating!!
I feel you, the uncertainty is scary. The good thing is, I heard Dr Jill Kampfer say that the risk of cancer is reduced when you stick to your steroids treatment plan. Make sure you get the ointment (fat based) not a cream. I've been on it since June (4 months now) and the pain & itching are finally gone 🙏🏼 And between steroid ointment use, make sure to apply Vaseline to the skin as often you can.❤ P.S. If you have a biopsy done ask them to really take enough time for the local anesthesia, my previous doc didn't.
Ask your doc to prescribe clobestrol, can’t hurt. Use for two weeks If you get relief, start using vitamin E oil daily. Clean up your diet. Research autoimmune.
I was diagnosed by my family doctor!!! I went into the office for a UTI screening and asked the doctor to examine me. Had they not looked, I’d still be clueless. I was told many times I had “atrophy” but not LS. I was active with it and ended up tearing during recent surgery. It is so important to share information about this.
Yes! It is common for folks to see the doctor for something unrelated and then find out they have LS. That must have thrown you through a loop initially. Thank you so much for watching and taking the time to comment.
Hi Thank you for this channel. I was diagnosed over 10 years ago, primarily by my doctor. I was then sent to a gynecologists I hospital where I eventually had a biopsy done. I have suffered so much, with pain, fusing, terrible itching, white patchy skin infact the whole works. I was prescribed the steroid cream. I am also in remission, I don't know why, but it's heaven, although I know it will return. This channel is so good, because I have never had anyone to talk to about it, as its not really a subject you can just start talking about. I have subscribed, so over the following days I shall be viewing all your posts and recommend posts. I really just wanted to say thank you really, and it's great not to feel so alone x
HI, Helen. Thank you so much for sharing your story, watching, and supporting my channel - I appreciate you so much. My new content will be on LSSN's page, so be sure to subscribe over there and watch my new videos - I have some great videos planned for 2023. You can sub at www.youtube.com/@lichensclerosussupportnetwork - and I totally get you. It can be such a lonely diagnosis and it's nice to see and no other faces of people with this condition. Consider joining our FREE LS virtual meetups at www.lssupport.net/connect. With love, Jaclyn
Jaclyn -- Thank you for sharing this information. You are providing a valuable public service to the Lichen Sclerosus community. It is clear that you have done your homework and I feel confident in listening to what you have to say. Keep up the great work.
Thank you for your content, I'm also part of the how stuff works community which is where I found your channel. Recently diagnosed at 31 (living in the UK) and absorbing as much information as possible to manage the condition. Very much enjoying your content!
Hi, Jade! Awesome, glad you found me! Feel free to message me with questions anytime. And thank you so much for supporting my content by watching and commenting - appreciate you!
Just found you. Thank you so much for all your information . I’m now going to watch all your videos over the next few days. You have been so helpful and that’s on this first video.
I'm 58, was diagnosed with a biopsy at 22. Was given steroid cream. I wish I could share my story. This has been a lifelong problem, and why NONE of my doctors never took it serious, I'll never understand. My skin has always been white and like tissue paper, severe itching. My labia minora was all ready small. I hit menopause at a young 39. Not one Dr offered hormones. Now I literally have no inner lips. Needless to say, I never was able to enjoy sex bv it hurt and was embarrassing. 4 biopsies later, LS, and menopause has virtually removed any inner lips I had. It used to be so pretty, but around 35, i just stopped having boyfriends and sex. My hand was my lover and I just want to enjoy sex before I die (I give myself about 15 yrs left)any thoughts or suggestions would be greatly appreciated. Or a doctor in Nevada or California
I'm so sorry for the late reply, I missed this somehow. Your story breaks my heart. Those doctors failed you in a number of ways and I'm so sorry. For sex, my recommendations are pelvic floor physical therapy, sex therapy, and/or dilators - I did all three. You can check out my blog www.lostlabia.com/blog for posts on these topics, and I have a book called "Dilators and Lichen Sclerosus: How to go From Painful Sex to Pain-Free sex" on sale on my website at www.lostlabia.com/buyebook . I also have a free dilator shopping guide www.lostlabia.com/dilatorguide that will help you pick through the different choices on offer. I can't recommend a doctor for you in those areas as I'm Canadian. You can look through the LS provider directory at www.lssupport.net/searchable-lichen-sclerosus-provider-database/ - please read their disclaimer at the top. All doctors in there have been referred to LSSN by others with lichen sclerosus.
Reading your story is like reading my own. After suffering through a 20 year marriage with a sexually vigorous man, I've remained single for 15 years because what man would want to be in a sexless marriage? I'm so happy that I found this site. I'm 59 and will try to repair the damage of deterioration, etc. I have learned diet playes a huge roll in inflammation.
I suspect I may have LS and am setting up an appointment with my doctor. Needless to say I am worried,and crying, but your video was very informative. Thank you.
Aw, I'm so sorry to hear that. I totally understand where you are coming from; those feelings are awful but very normal. If you get a diagnosis and need support, I do offer 1:1 LS support calls
@@thelostlabiachronicles It's official...LS. Prescribed the steroid ointment. My doctors are great, caring. They explained and answered all my questions. I felt so much better and at ease about this condition. It's also my faith that has gotten me thru many health issues in the past. I would like to thank you Jaclyn for your videos and website. The information you provide is truly helpful in many ways.🌹🌹
@@xstitchfan4984 Thanks for updating me. Sorry to hear about the diagnosis but hopefully now with good treatment and care you can work towards remission
I wish I had went to sooner. I am now in so much pain had breast cancer they did a lumpectomy told me I had a yeast infection meds didn't work. 2 years later omg I can't walk it hurts so bad just got biopsies. One side worse then other. Maybe pre cancer cells. Go to Dr immediately
Hey, Becky. Sorry to hear that. Steroids are definitely not one sized fits all. For me, it works well, others need to combine it with other treatments, others still need completely non-steroidal options. I hope you have found a non=-steroidal option that works for you.
Thank you so much. This is scary, but I think manageable. Question-- when you say treating, do you mean using the clobestatol cream on a regular basis? I'm just confused. I was given the cream and have been using it for maintenance or when I get flare-ups... Is this considered treating? Greatly appreciate any feedback ❤❤❤
The majority (about 85%) of my labia minora have resorbed into my labia majora and to my knowledge, there is nothing thus far in the medical literature that can bring them back. You can unfuse, but resorbed labia cannot come back (you'd almost need to build new labia and then surgically attach them). My clitoral hood is very fused and while there is a surgery to unfuse the clitoris, to be a candidate you need to have the fusing cause functional issues (e.g., can no longer feel anything/cannot orgasm). But, since my fusing doesn't cause a functional issue, I'm not pursuing the surgery and am happy as I am.
Tip: you use "kind of" to the point that it's distracting. I get it. It's a habit. Some people say "um" or "you know" a lot. I had to break my own communication habits. I don't mean to be critical... just offering advice. Thank you for the video explanation.
Thank you for your feedback. I'll try to do better in the future :) With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
Thank you so much for all your content! You are an angel. I''m 65 and got diagnosed by my gynocologist in October. I did go ahead and have a biopsy because at first she thought it was herpes. Then I got the shingles. Yes, you can get the shingles in your vulva. It goes up the nerve in the vulva around the anus and your butt up to the waistline. Mine was on the right side. Anyway, I did the biopsy to make sure I wasnt using steriods for nothing. I have lost my labia minora. I don't know how long I have had this because I am post menopausal I have had itching and dryness for the last 5 years. I would like to have sex again. I am looking forward to your video on diliators. I am not able to get an appointment with a pelvic floor therapist until June. She comes highly recommended and accepts my insurance.
Karen, thank you so much for sharing your journey and for taking the time to comment. I truly appreciate you. It is totally possible to have sex with LS, although it can take some time and work. Yes! I will definitely have content on my blog and TH-cam on dilators before you start working with the pelvic floor physiotherapist. Honestly, pelvic floor physiotherapy is a God send, and I hope you have a great experience with her in the summer.
Hi, Pearl. Thanks for watching and taking the time to comment. I totally know how you feel about the sadness; you are not alone. Here's the link to the free eBook: www.lostlabia.com/lsebook
Hi, Justine. I mean, clearly, I agree with you, hence my making this video. However, it is still an important question to address, as numerous providers and patients alike, do not think/act like LS is serious. You'd be surprised how many people say yeah, I have LS, but it's mild so I don't treat it, or how many providers do not adequately provide patients with a thorough debrief on their condition, including risks for vulvar cancer, what the statistics are, what the research shows, etc. Because most people do not get that education, I make these videos. Also, I've had many newly diagnosed people ask me if it's serious or not, so again, it's an important question to ask and to address.
Inas just diagnosed and I am 73. I was itchy and had darkness and blotches on my body for over a year. Treated with creams for itching. Can there be a tie in with hypothyroidism? What about diet and allergies? Stress? What type of doctors should one see?
I was diagnosed fifteen years ago. Cannot use Clobastol anymore it literally made my skin fall off. Miserable having it more miserable having doctors that dont know what to do with it. Mine spread from vulva to anus. Horrid
Great video! question does all this info also apply for men? like the steroid ointment and all that? will the skin go back to normal with this treatment?
For folks with penises, things are a little different. I'm working on putting together videos on penile LS in the future. BTW, my new videos are on LSSN's channel, so when I do videos on that topic, they will be published over here: www.youtube.com/@lichensclerosussupportnetwork
I think I have a mild case of this. Its been 15 years of constant treatment for thrush b/c no one could figure it out. I have been through 5 gyns. Now I have a midwife/NP and I know she’ll hear me out on testing for this and not just assume Im too young. I wish I could find pix that were not postmenopausal woman.
Fair, it's hard because in pictures of vulvar LS, they do not state the age of the patient for privacy reasons, so, for the most part it's hard to know their exact ages.
@@thelostlabiachronicles thanks for the reply! My midwife agreed its some kind lichenization of the skin but said it could be from several disorders. She said she didnt think it was enough to biopsy and that any of the few things it might come back as would be treated with colbetasol. So she called it in for me. So far the thick ointment is not great but the thin gel helps right away! I asked if she thinks it might get worse and she said she think not b/c its been the same for 15 years but I didnt ask if menopause will eventually trigger a worsening
Hi, Stacey. Thanks so much for watching and commenting. Could you maybe have both? Sounds like you aren't confident in your VIN diagnosis - can you seek a second opinion? Maybe another doctor can biopsy to confirm LS or not?
So when you have an autoimmune disease you are more likely to get others in the future. It's not a guarantee though - think of it like a risk spectrum. In the literature, we see thyroid disease - especially Hashimoto's - Grave's disease, alopetia areata, IBS, pernicious anemia, and rheumatoid arthrisis are some of the most common ones folks with LS can have (again, not a guarantee). I don't have anything else other than LS when it comes to autoimmune conditions.
@@thelostlabiachronicles I dunno much about it myself but if you look up dr Eric Berg DC on youtube and lichen he talks in one of the videos as a good remedy to relief from these conditions. SO I just learned of it before watching yoru video. Thought it might be helpful to look into it.
Who ever thought lichens can be cured am permanently free from it now with the special herbs medications which Dr iyaremoses on TH-cam prepared for me.
If you have found this channel - you should watch all of her videos. I was misdiagnosed for 15 years to finally be correctly diagnosed in February 2024 as I was also diagnosed with Squamous cell Carcinoma most likely caused by untreated Lichen Sclerosis. My tumor is inoperable- and lay my life in the hope chemo and radiation works for me. Please demand answers from your doctors- do not accept their easy answers! Get the treatment you need.
I’m very sorry you are in this seriously awful situation - sending you all the best of wishes❤be well❤
I m glad to find all these ladies out here knowing your not alone helps ..
I cured myself with Vit E oil, cotton panties and panty liners, Activia, brown seaweed, Omega 3 and 7. The Vit E oil seems to be what cured me and in 6 months zero issues. I was diagnosed via biopsy. Good luck to everyone.
I'm glad you found what worked for you. Unfortunately, there is no cure for LS yet. It can go into remission (I've been in remission for almost three years & no symptoms) but it cannot be cured. With love, Jaclyn
Anything in the world can be cured..just get rid of process food juice berries detox and take natural meds
Did you change your diet in any way?
Synthetic vitamin E oil can be cancer causing. I think there is a better form.
Perrins naturals has a decent creme that helps relieve symptoms
I am only 8 minutes in and I have learned more about LS than I have in the past 15 years from my GP and gyne.
Just watched first video. So good to see such a kind and caring human face explaining so carefully and thoroughly. Thank you for all the hard work you have put into research and sharing of your knowledge.
Thank you so much, Collen. I appreciate you watching and taking time to comment. If ever you have any topic requests, let me know!
You’ve given me hope. Thank you. I am in my mid 60s with this diagnosis and i can’t imagine being diagnosed with this as young as yourself. I also received the “it’s no big deal” vibe after diagnosis with no follow-up appointment even scheduled. It is critical to find a doctor, preferably a specialist in gynecological disease that takes the condition seriously, as well as do our own homework. You are doing a great service much needed!
Hi, Sage! Thank you so much for watching and taking the time to comment. Yes, exactly! So many doctors tell patients, it's a skin thing, use the steroids and that's it. But when you make it seem like no big deal, many patients opt to ignore it (I've spoken to more than a handful of folks who did this only for it to progress viciously later). Amen, find a good doctor, do your own research! Good advice
@@thelostlabiachronicles My daughters LS was misdiagnosed for decades,she was treated for thrush,the constant itching sent her into a meltdown,ling story short,at36 she was diagnosed with Vulval cancer at 37,it spread to her cervix, she had her lymph nodes remo6,partial vulvectomy,I thought I'd just put it out there😢😢😢
I am on doctor 4 supposedly this time its nerve pain. There are many different type of skin conditions why we have all this discomfort. Most doctors just try a bunch of things when nothing works we're on our own. Now gabapentin so far no change. Yes, all extremely frustrating!!
New subscriber. Thanks for sharing this.
Im in so much pain cannot get to see my GP im so scared of it turning cancerous. Thankyou for helping us your Amazing God Bless you ❤
Hey Linda, have you been diagnosed with LS already or are you still waiting for an appointment for that?
@@madeleine7471 I was diagnosed 5yrs ago only seen my GP twice. Thankyou for your concern xx 💐
I feel you, the uncertainty is scary. The good thing is, I heard Dr Jill Kampfer say that the risk of cancer is reduced when you stick to your steroids treatment plan.
Make sure you get the ointment (fat based) not a cream.
I've been on it since June (4 months now) and the pain & itching are finally gone 🙏🏼
And between steroid ointment use, make sure to apply Vaseline to the skin as often you can.❤
P.S.
If you have a biopsy done ask them to really take enough time for the local anesthesia, my previous doc didn't.
Ask your doc to prescribe clobestrol, can’t hurt. Use for two weeks If you get relief, start using vitamin E oil daily. Clean up your diet. Research autoimmune.
I was diagnosed by my family doctor!!! I went into the office for a UTI screening and asked the doctor to examine me. Had they not looked, I’d still be clueless. I was told many times I had “atrophy” but not LS. I was active with it and ended up tearing during recent surgery. It is so important to share information about this.
Yes! It is common for folks to see the doctor for something unrelated and then find out they have LS. That must have thrown you through a loop initially. Thank you so much for watching and taking the time to comment.
Hi
Thank you for this channel.
I was diagnosed over 10 years ago, primarily by my doctor. I was then sent to a gynecologists I hospital where I eventually had a biopsy done.
I have suffered so much, with pain, fusing, terrible itching, white patchy skin infact the whole works.
I was prescribed the steroid cream.
I am also in remission, I don't know why, but it's heaven, although I know it will return.
This channel is so good, because I have never had anyone to talk to about it, as its not really a subject you can just start talking about.
I have subscribed, so over the following days I shall be viewing all your posts and recommend posts.
I really just wanted to say thank you really, and it's great not to feel so alone x
HI, Helen. Thank you so much for sharing your story, watching, and supporting my channel - I appreciate you so much. My new content will be on LSSN's page, so be sure to subscribe over there and watch my new videos - I have some great videos planned for 2023. You can sub at www.youtube.com/@lichensclerosussupportnetwork - and I totally get you. It can be such a lonely diagnosis and it's nice to see and no other faces of people with this condition. Consider joining our FREE LS virtual meetups at www.lssupport.net/connect. With love, Jaclyn
Jaclyn -- Thank you for sharing this information. You are providing a valuable public service to the Lichen Sclerosus community. It is clear that you have done your homework and I feel confident in listening to what you have to say. Keep up the great work.
Aw, thank you so much. I appreciate hearing this :D Thanks for making me smile today. With love
You are an amazing women, Jaclyn 💚 can't thank you enough for all that you do for the LS community.💚
Thank you so much, Dr. Mishra. I appreciate you watching and taking the time to comment
Thank you for your content, I'm also part of the how stuff works community which is where I found your channel. Recently diagnosed at 31 (living in the UK) and absorbing as much information as possible to manage the condition. Very much enjoying your content!
Hi, Jade! Awesome, glad you found me! Feel free to message me with questions anytime. And thank you so much for supporting my content by watching and commenting - appreciate you!
Just found you. Thank you so much for all your information . I’m now going to watch all your videos over the next few days. You have been so helpful and that’s on this first video.
Hi, Maria! Aw, thank you so much for watching and taking the time to comment. I so appreciate you :) Glad you found this first one so informative.
I'm 58, was diagnosed with a biopsy at 22. Was given steroid cream. I wish I could share my story. This has been a lifelong problem, and why NONE of my doctors never took it serious, I'll never understand. My skin has always been white and like tissue paper, severe itching. My labia minora was all ready small. I hit menopause at a young 39. Not one Dr offered hormones. Now I literally have no inner lips. Needless to say, I never was able to enjoy sex bv it hurt and was embarrassing. 4 biopsies later, LS, and menopause has virtually removed any inner lips I had. It used to be so pretty, but around 35, i just stopped having boyfriends and sex. My hand was my lover and I just want to enjoy sex before I die (I give myself about 15 yrs left)any thoughts or suggestions would be greatly appreciated. Or a doctor in Nevada or California
I'm so sorry for the late reply, I missed this somehow. Your story breaks my heart. Those doctors failed you in a number of ways and I'm so sorry. For sex, my recommendations are pelvic floor physical therapy, sex therapy, and/or dilators - I did all three. You can check out my blog www.lostlabia.com/blog for posts on these topics, and I have a book called "Dilators and Lichen Sclerosus: How to go From Painful Sex to Pain-Free sex" on sale on my website at www.lostlabia.com/buyebook . I also have a free dilator shopping guide www.lostlabia.com/dilatorguide that will help you pick through the different choices on offer. I can't recommend a doctor for you in those areas as I'm Canadian. You can look through the LS provider directory at www.lssupport.net/searchable-lichen-sclerosus-provider-database/ - please read their disclaimer at the top. All doctors in there have been referred to LSSN by others with lichen sclerosus.
Reading your story is like reading my own. After suffering through a 20 year marriage with a sexually vigorous man, I've remained single for 15 years because what man would want to be in a sexless marriage?
I'm so happy that I found this site. I'm 59 and will try to repair the damage of deterioration, etc.
I have learned diet playes a huge roll in inflammation.
Thank you so much for the work you’ve done and sharing your story ❤️ so helpful!
Hi, Marion. So glad you found it helpful. I appreciate you watching and taking the time to comment. With love, Jaclyn
I suspect I may have LS and am setting up an appointment with my doctor. Needless to say I am worried,and crying, but your video was very informative. Thank you.
Aw, I'm so sorry to hear that. I totally understand where you are coming from; those feelings are awful but very normal. If you get a diagnosis and need support, I do offer 1:1 LS support calls
@@thelostlabiachronicles
It's official...LS. Prescribed the steroid ointment. My doctors are great, caring. They explained and answered all my questions. I felt so much better and at ease about this condition. It's also my faith that has gotten me thru many health issues in the past.
I would like to thank you Jaclyn for your videos and website. The information you provide is truly helpful in many ways.🌹🌹
@@xstitchfan4984 Thanks for updating me. Sorry to hear about the diagnosis but hopefully now with good treatment and care you can work towards remission
I wish I had went to sooner. I am now in so much pain had breast cancer they did a lumpectomy told me I had a yeast infection meds didn't work. 2 years later omg I can't walk it hurts so bad just got biopsies. One side worse then other. Maybe pre cancer cells. Go to Dr immediately
I was just diagnosed by exam. I have all symptoms. It’s devastating .
Clobetasol. Doesn't do much. LS itching keeps coming back. Thank you for this info.
Hey, Becky. Sorry to hear that. Steroids are definitely not one sized fits all. For me, it works well, others need to combine it with other treatments, others still need completely non-steroidal options. I hope you have found a non=-steroidal option that works for you.
Thank you so much. This is scary, but I think manageable. Question-- when you say treating, do you mean using the clobestatol cream on a regular basis? I'm just confused. I was given the cream and have been using it for maintenance or when I get flare-ups... Is this considered treating? Greatly appreciate any feedback ❤❤❤
For 5 years my regular doctor thought I had an STD. I never did! So for 5 years a stuffed before finding a specialist.
Did your lost labia and hooded clitoris come back? I learned a lot! Thank you!
The majority (about 85%) of my labia minora have resorbed into my labia majora and to my knowledge, there is nothing thus far in the medical literature that can bring them back. You can unfuse, but resorbed labia cannot come back (you'd almost need to build new labia and then surgically attach them). My clitoral hood is very fused and while there is a surgery to unfuse the clitoris, to be a candidate you need to have the fusing cause functional issues (e.g., can no longer feel anything/cannot orgasm). But, since my fusing doesn't cause a functional issue, I'm not pursuing the surgery and am happy as I am.
@@thelostlabiachronicles Thank you for answering! I'm so glad you are in remission, it gives others hope!
My 5 year old daughter just got diagnosed yesterday and this is all overwhelming. Appreciate the video
Tip: you use "kind of" to the point that it's distracting. I get it. It's a habit. Some people say "um" or "you know" a lot. I had to break my own communication habits. I don't mean to be critical... just offering advice. Thank you for the video explanation.
Thank you for your feedback. I'll try to do better in the future :) With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
Very informative thanks
Thank you so much for all your content! You are an angel. I''m 65 and got diagnosed by my gynocologist in October. I did go ahead and have a biopsy because at first she thought it was herpes. Then I got the shingles. Yes, you can get the shingles in your vulva. It goes up the nerve in the vulva around the anus and your butt up to the waistline. Mine was on the right side. Anyway, I did the biopsy to make sure I wasnt using steriods for nothing. I have lost my labia minora. I don't know how long I have had this because I am post menopausal I have had itching and dryness for the last 5 years. I would like to have sex again. I am looking forward to your video on diliators. I am not able to get an appointment with a pelvic floor therapist until June. She comes highly recommended and accepts my insurance.
Karen, thank you so much for sharing your journey and for taking the time to comment. I truly appreciate you. It is totally possible to have sex with LS, although it can take some time and work. Yes! I will definitely have content on my blog and TH-cam on dilators before you start working with the pelvic floor physiotherapist. Honestly, pelvic floor physiotherapy is a God send, and I hope you have a great experience with her in the summer.
Thank you I did feel sad about this I have this. Can I get the free book please .
Hi, Pearl. Thanks for watching and taking the time to comment. I totally know how you feel about the sadness; you are not alone. Here's the link to the free eBook: www.lostlabia.com/lsebook
Thank you SOOOOO much!
Hi, Amanda! Thank you so much for watching and taking the time to comment. I really really appreciate your support
OML! Of course LS is serious! It can progress to Squamous Cell Cancer!
Hi, Justine. I mean, clearly, I agree with you, hence my making this video. However, it is still an important question to address, as numerous providers and patients alike, do not think/act like LS is serious. You'd be surprised how many people say yeah, I have LS, but it's mild so I don't treat it, or how many providers do not adequately provide patients with a thorough debrief on their condition, including risks for vulvar cancer, what the statistics are, what the research shows, etc. Because most people do not get that education, I make these videos. Also, I've had many newly diagnosed people ask me if it's serious or not, so again, it's an important question to ask and to address.
Thank you.
Thank you ❤
Inas just diagnosed and I am 73. I was itchy and had darkness and blotches on my body for over a year. Treated with creams for itching. Can there be a tie in with hypothyroidism? What about diet and allergies? Stress? What type of doctors should one see?
I was diagnosed fifteen years ago. Cannot use Clobastol anymore it literally made my skin fall off. Miserable having it more miserable having
doctors that dont know what to do with it. Mine spread from vulva to anus. Horrid
Great video! question does all this info also apply for men? like the steroid ointment and all that? will the skin go back to normal with this treatment?
For folks with penises, things are a little different. I'm working on putting together videos on penile LS in the future. BTW, my new videos are on LSSN's channel, so when I do videos on that topic, they will be published over here: www.youtube.com/@lichensclerosussupportnetwork
I think I have a mild case of this. Its been 15 years of constant treatment for thrush b/c no one could figure it out. I have been through 5 gyns. Now I have a midwife/NP and I know she’ll hear me out on testing for this and not just assume Im too young. I wish I could find pix that were not postmenopausal woman.
Fair, it's hard because in pictures of vulvar LS, they do not state the age of the patient for privacy reasons, so, for the most part it's hard to know their exact ages.
@@thelostlabiachronicles thanks for the reply! My midwife agreed its some kind lichenization of the skin but said it could be from several disorders. She said she didnt think it was enough to biopsy and that any of the few things it might come back as would be treated with colbetasol. So she called it in for me. So far the thick ointment is not great but the thin gel helps right away! I asked if she thinks it might get worse and she said she think not b/c its been the same for 15 years but I didnt ask if menopause will eventually trigger a worsening
Children too?😮
I have all those symptoms yet still doctor says it’s vni
Hi, Stacey. Thanks so much for watching and commenting. Could you maybe have both? Sounds like you aren't confident in your VIN diagnosis - can you seek a second opinion? Maybe another doctor can biopsy to confirm LS or not?
Is it related with other autoimmune disease?
So when you have an autoimmune disease you are more likely to get others in the future. It's not a guarantee though - think of it like a risk spectrum. In the literature, we see thyroid disease - especially Hashimoto's - Grave's disease, alopetia areata, IBS, pernicious anemia, and rheumatoid arthrisis are some of the most common ones folks with LS can have (again, not a guarantee). I don't have anything else other than LS when it comes to autoimmune conditions.
Have you hear of or tried purslane? If you got any thoughts on it?
I haven't. Can you tell me more about it?
@@thelostlabiachronicles I dunno much about it myself but if you look up dr Eric Berg DC on youtube and lichen he talks in one of the videos as a good remedy to relief from these conditions. SO I just learned of it before watching yoru video. Thought it might be helpful to look into it.
@@r_kai2369 thank you!
Who ever thought lichens can be cured am permanently free from it now with the special herbs medications which Dr iyaremoses on TH-cam prepared for me.
Is it spread through vaginal unprotected sex ?
I am having similar symptoms after having sex.
Absolutely not. Lichen sclerosus is not contagious at all, nor is it an STI :)
Lichen sclerosus also doesn't affect the vagina; it affects the vulva.
No, it's not an STI. And men can also have it, typically affecting their penis' foreskin. It's just even rarer.