This definitely resonated. I'm looking forward to the next one. I'm still working on remission. I'm so glad I found another individual who's openly talking about their personal experience with this because thus aspect of my life has been very lonely for a very long time.
Hi, Thayer. Thanks for watching, commenting and for your support. Remission can be a tough journey, for sure. I definitely believe in the power of being open and sharing. I know how healing it can be to hear about someone else going through something similar. If you are having a hard time with stress and LS, consider joining my workshop called, "The Vagus Nerve and Lichen Sclerosus" online. I'm hosting it tonight from 6-8pm EDT (July 13th) and July 17th, Sunday, from 2-4pm EDT - for more details, go to www.lostlabia.com/julyworkshop and use code JULY for an extra 20$ off at checkout if you decide to join. Also, with respect to feeling alone, if you are ready and comfortable, considering joining our LS virtual meetups - they are free and held every other Saturday from 2-4pm and 7-9pm EDT - sign up here www.lssupport.net/connect - next meetup is July 23rd. Also, if it's healing to hear from others with LS, I also have The Grief Project on my blog (www.lostlabia.com/grief) where folks around the world share their experience with grief and ls (you're welcome to submit a piece if ever you are interested). I'll also be hosting a free LS and grief meetup in the fall for folks to share their stories with grief and LS, so stay tuned for that. With love!
These videos are so edifying and clarifying! About 6 years ago in my early 60s, my gyn prescribed Clobetesol and said that I had LS. No other discussion. I used it until the itching stopped and went about my life. Fast forward, she died and I found another gyn, a younger one mind you, who didn't address it really. During the summer, I had intense perineal itching and started using Vitamin E on my genitalia. As my gyn was on vacation, I saw a Nurse Practitioner who prescribed an antifungal topical cream for 7 days but also recommended that I get a biopsy to confirm LS vs cancer. The biopsy, done by my regular gyn confirmed LS, which had also spread to other vulvar areas in small patches. She called me last week to tell me that I should use the Clobetesol daily for a month, then taper to every other day for a month, then, biweekly for my lifetime. Until I heard these videos, I didn't know about rubbing it in on moist, warm skin for any specific time. I'm in the USA and grateful that I can see a specialist when I need to. Coconut oil didn't soothe my itching as a daily Vitamin E capsule, but fortunately, the itching subsided before the Clobetesol which I'm now using in the affected areas, to calm my skin in that delicate area. Before these videos, I was unaware that so many suffer with this autoimmune disease. Thank you so much for being so vulnerable in your sharing!
Good to see someone talking about lichen sclerosis. I have suffered with it for many years off and on. I kept going back and forth to doctors describing pain, ripping, tearing etc and even gynaecologist didn't diagnose. Eventually dermatologist did. It is such a relief when things feel normal down there, as so used to pain or discomfort or itch. This is helpful for anyone just diagnosed. ❤
Hi, Ann. Thank you so much for watching and taking the time to comment. I'm glad you are doing well with your LS now. I agree, it's amazing when we don't feel any symptoms!
Male sufferer here. I’m also in Canada. I’m 25 and was diagnosed by my GP over summer. Started noticing white patches that would grow in size on my genital area. Was prescribed Clobetasol by my GP and was referred to a Urologist. I am on a wait list so right now I’m in a grey zone just continuing treatment with Clobetasol for the time being.
Hi - I am impressed with your story. I got my diagnosis 15 years ago. Back then LS was very rare and where I live in Denmark almost no GPs knew about it. I was lucky that mine did but the only thing he could offer me was cortisol creme which I was too nervous about, so I embarked on a journey of natural healing methods. It took me 2,5 years to heal and I got completely rid of it. During the 2,5 years it had gotten really bad and I had lost quite a bit of my vulva and had some very unpleasant symptoms. So when I finally succeeded in loosing all symptoms and regenerating a normal skin, I was so happy.
@@cjbenjamin8525 No wheat, sugar, meat, dairy, eggs, alcohol, smoke, coffee tea for 2,5 years. Correcting my circadian cycle: sleep in a dark room, go to bed at 22 hrs, sleep 8 hours. One hour daylight out of doors every day walking. No tight jeans - couldn't anyway for the pain. Removed all synthetics from my clothes and environment (from chairs and pillows) and no artificial creams (you should be able to eat your creams, soaps and shampoos). Drank at least two liters of water a day. Had a really good reflexzone therapist that treated me every week. I found a clairvoyant who helped me with psychological issues. Got out in nature a lot. Then finally I used MMS for a five months protocol that finally healed everything up and normalised my skin completely. MMS has however become prohibited in many countries and been censured out of the net, so it is difficult to find now. Try to check Jim Humble who rediscovered it. It is 13 years ago I stopped doing the cure and I am still good. I continue being careful with what I eat and still take care to sleep well in darkness and go out in daylight every day, because that is the basis for a normally functioning body and mind.
Thank you so much! I am so sorry you had to go through such a long wait and be on your own with this condition. Sharing your story will make it easier for so many others. ❤
Definitely, that is the hope. I'm on a mission to change the future of LS. Thanks so much for watching and taking the time to comment. 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
My start on this journey was similar to yours. At beginning of October say a gyn NP who diagnosed me and sent me home with a two paragraph description and a tube of clob and said to come back in a month. I was applying it just like you-a big glop, swipe, swipe, done. I left there thinking this was kind of like a chronic yeast condition but then fell down the rabbit hole of online info and was horrified at how much I didn't realize that this is a serious disorder. I am still searching for a knowledgeable provider in my community. Thank you for your videos.
I've had this for about 2 years. Was diagnosed by my OBGYN a year ago. She recommended over the counter creams (I was already using that burned for a few seconds) and to check back in 3 months if not better. I got covid and my mom passed away a month later so just went back to the Obgyn recently. She prescribed Premarin cream and a steroid cream. Helping some. Thanks for your openness. This is also helpful.
I also want to add that it's comforting to hear that you started off applying it 'wrong' (2-3 times every day for 9 months and on a dry vulva without rubbing it in) AND your recovery took a very long time and was up and down, where you had a couple of months of it all going well and then a month of pain and discomfort then healing again. Also, the info on pelvic floor physio. Now you are in remission. I needed to hear this! Thank you 🥰
Thank you very much for sharing your LS journey in a clear and concise manner. I haven't found a Dr who is aware enough of LS to handle this and it's frightening. I keep hearing, just go to a GYN, but I think it's beyond many general Drs. I've told other Drs and they were surprised. Told me they didn't know of it affecting the genitalia! I was told by one Dr that there's a Lichen Society, but haven't looked into it- too busy trying to find a Dr! Blessings! 🌹
Hi Justine! Unfortunately, this is super common. Doctors have a lot of catching up to do when it comes to understanding, diagnosing, and treating LS. Check out this link - www.lssupport.net/searchable-lichen-sclerosus-provider-database/ - we have a provider directory that includes providers from across the globe that treat LS. It's referral based, which means everyone in there was recommended by a patient with LS. Please read the disclaimer. Hopefully this helps!
Justine I feel the same way. I seen my regular PCP who then referred me to a woman's clinic. They looked down there and I heard not only the doctor gasp but the nurse that was with her. I was written a prescription for the topical steroid and that was it. No pamphlets, no referrals, no instructions on how to apply this, just sent on my way. I don't think there is enough research on this, there is not enough clinical trials, there is NOT enough information on this and it scares me too death. As I said with this disorder I have to worry about my vaginal hole closing up, my clitoris has now been deformed and I can't achieve orgasm anymore, I worry about cancer, I worry about my urethra closing up. The general public doesn't seem to worry about this disorder enough to push for more testing and treatment options. Good luck in your journey you are definitely not alone.
Thank you for your information wish I had known earlier to get information on LS I'm 73 and only recently have subscibed so much to read Greetings from South Africa
That's exactly how I learnt to manage steroids with psoriasis and atopic dermatitis - but spreading usage instead of applying it daily. Now I'm under suspicion for LS (beginning stages, I'm 25yo) which sucks, but because I have other autoimmune skin diseases, I guess it made me quicker to notice any symptoms). Thanks a lot for your content. I'm seeing a dermatologist in a couple days to present the situation.
Ohh, good luck at the derm and keep me posted on how it goes! Good thing with LS is the earlier it's caught and treated, the less likely it is to progress and scar.
Thankyou for sharing your journey & advice - its incredible how alone you do feel once receiving this diagnosis and unfortunately have to navigate & explore self help alone! I was handed a tube of cream and a piece of paper with basic explanation. I now realise i too have lost my labia completely and have fusing of the CH "loss of skin architecture, erythema on labia minora & labial fusing with CH" - i had no idea what any of that meant!! I found it weird i too have suffered chronic back/pelvic girdle pain for many years - and have arthritis L5/L4/S1 too... wonder if there is a connection 🤔. Do you have any other autoimmune disorders? I have Hypothyroidism...and see there is a link to this too.
I can totally relate, it seems crazy but after reading some of Dr Caroline Leafs book, Switch on Your Brain. I learned how to switch off stress. Only problem now is i didnt continue with that path, and started looking into so many things- gut biome, thryrode, stress again, etc. and so fell off track. Bottom line is that mental health stress is a key factor.
Hi Jaclyn thank you so much for your videos I find them to be so informative and I appreciate you so much 💖 my question is do we have to do pelvic floor therapy or is it ok to just do Kegels 😅 I just got diagnosed with LS while pregnant and I have been so emotional 😭 I’m just trying to learn as much as I possibly can it’s so hard to deal with this much all while being pregnant 😢 I’m scared but feel a little better since finding your videos again thank you so much 💕
I would recommend everyone with lichen sclerosus at minimum get an assessment from a pelvic floor PT. Kegels is actually almost never encouraged as it makes most conditions worse (there are only very specific instances were these will be prescribed. As of 2023, I partnered with LSSN and my 2023 videos are now on their channel @lichensclerosussupportnetwork - check out this video I did with a PT about lichen sclerosus, painful sex, and the pelvic floor th-cam.com/video/mxQjC3jEoYg/w-d-xo.html - be sure to subscribe to our channel so you don't miss any of my/our new content :) It is A LOT to deal with for sure and you are not alone in these feelings. If you ever need support, I co-host FREE LS virtual meetups every other Saturday - www.lssupportnetwork.org/connect and I also do 1:1 support calls if group calls isn't your cup of tea or you want longer, more individualized support - learn more at www.lostlabia.com/supportcall + be sure to get my FREE LS eBook at www.lostlabia.com/lsebook
The prescription creams only made my symptoms worse. I began using A an D ointment (without the zinc oxide) once a day 2 to 3 times a week. It’s been a year and no itching ever! It was a game changer!!
Hi Jacklyn! I love all your videos. I also am a Canadian, living just north of Toronto. I was very surprised to hear that you are Canadian! Where in Canada do you live?
I’m also in Toronto! I can not get any gyne or OBGYN to diagnose me with LS! It’s over a year wait for any specialist here in Ontario. Any specialist you can recommend???
I've been diagnosed about five years ago. I have gone through the menopause. Move Drs hadnt seen a GP in four yrs. The situation is very difficult as I couldnt get an appointment in the last three yrs. I've been terrified of it turning cancerous. Luckily I'm on a steroid cream now. Doesnt feel as sore. Sex has been non existent as the entrance seems to have shrunk somewhat. Not sure what the future holds now
I used steroids to help with the disease but there would be flare ups. It was as though my life was taken over by the LC. My quality of life had diminished. Then my gynae advised me to try the Juliet laser procedure. She advised that I needed 3 treatment 4-6 weeks apart followed by a single top up treatment every 18 to 24 months. I had my first Juliet treatment in December 23 followed by the second treatment yesterday 6 weeks later. In the 6 weeks between the procedures I didn’t use any steroid. My quality of life felt like it had gone back to normal before the LC. I will have my 3rd Juliet treatment at the end of February. The first treatment was extremely painful I could hardly tolerate the procedure. The second treatment was a lot better, I guess the first treatment had already started to strengthen my vaginal walls. In my mind using steroid is counterproductive, the viscous circle of steroids and flare ups is quite challenging. I had to pay for the treatment and it’s not cheap. It’s early days but I am hoping that I don’t have to rely on steroids again. I use Lalenas oil instead of creams for moisturiser.
Over the last 3 years my man and my best friend were dying of cancer (they recently passed). My LS flared up and has stayed bad for the last 3 years. Vulva is gone, lichen lesions are spreading. I cannot tolerate Clob…my GP doesn’t know what to do, and my gynaecologist has not examined me for 10 years. I am in New Brunswick, and I feel like I am at the end of my rope. I use coconut oil, but the itching and pain prevents me from sleeping well. I am in constant distress. I don’t see a future.
I am so sorry to hear that. I cannot imagine the heaviness you have had to carry for so long. That would be almost unbearable for anyone. I see and hear you. NB is hard; I know there aren't too many specialists in NB. Have you tried LSSN's provider directory at www.lssupportnetwork.org/providers - maybe someone is listed that you haven't seen before. You may have something called refractory lichen sclerosus - I talk about that and explain what it is and what to do in the second half of this podcast episode - open.spotify.com/episode/6QlGv0siB4KOBjr5VmrEoj?si=ItsOdvifQcSXojDih0DhMA In the meantime, perineal ice packs and topical lidocaine can help with pain and itch. Your GP may also be able to prescribe medication such as amitriptaline temporarily to help with the itch. Sometimes intralesional steroid injections are required, maybe see if your GP can send you to a hospital for that. I also do have a page full of crisis support resources here: www.lostlabia.com/crisis With love, Jaclyn
can you tolerate tacrolimus. it's an alternative to clobetasol. I use clobetasol and cut out all inflammatory foods and carbs, in remission right now. th-cam.com/video/vBCihbuID1Y/w-d-xo.htmlsi=FX4OntCOQSS1HGhU
@@thelostlabiachronicles thank you for your reply. I will give these suggestions to the new doctor I am seeing in October. In the meantime a compounding pharmacist made me some boric acid suppositories that have lessened the itching dramatically.
So sorry to hear this. I too am desperate to find relief. The turning point was discovering Functional Medicine. I read Jeff Bland's book and knew this was the way forward. LS needs to be treated holistically, starting with the gut biome and food sensitivities. There are always other contributing factors that you may not be aware of. One of the triggers of Autoimmune Disease is leaky gut triggered by the usual allergens - dairy, gluten, soy etc. Start digging and begin the journey. Hang in there!
Hi, Dorothy. Thanks for watching and leaving a comment. I'm so sorry to hear you are in so much pain. It's absolutely miserable, I know. I have a whole video that explains LS signs and symptoms that you can watch here: th-cam.com/video/rJ1H1bf1unI/w-d-xo.html
Yes, I actually had an ok "relationship" pre LS but there was room for improvement , and LS was an impetus to develop healthier and stronger connection w my body and deeper appreciation for my vulva! This did not mean I do not feel pain or frustration, I was just more in touch with all the feelings, proceed them better, and cherished myself more.
@@lindakautzman7388like your comment . The Peggybuetow person instead of listening to the content - she came away from this only concerned about the speaker’s make up ?
Stem cells and prp should at least be a last alternative for people like me now who's failed steroid creams and one surgical procedure I'm a guy my quality of life is at 0% I think it's worth a chance this condition is going to make me crazier than I already am
This definitely resonated. I'm looking forward to the next one. I'm still working on remission. I'm so glad I found another individual who's openly talking about their personal experience with this because thus aspect of my life has been very lonely for a very long time.
Hi, Thayer. Thanks for watching, commenting and for your support. Remission can be a tough journey, for sure. I definitely believe in the power of being open and sharing. I know how healing it can be to hear about someone else going through something similar. If you are having a hard time with stress and LS, consider joining my workshop called, "The Vagus Nerve and Lichen Sclerosus" online. I'm hosting it tonight from 6-8pm EDT (July 13th) and July 17th, Sunday, from 2-4pm EDT - for more details, go to www.lostlabia.com/julyworkshop and use code JULY for an extra 20$ off at checkout if you decide to join. Also, with respect to feeling alone, if you are ready and comfortable, considering joining our LS virtual meetups - they are free and held every other Saturday from 2-4pm and 7-9pm EDT - sign up here www.lssupport.net/connect - next meetup is July 23rd. Also, if it's healing to hear from others with LS, I also have The Grief Project on my blog (www.lostlabia.com/grief) where folks around the world share their experience with grief and ls (you're welcome to submit a piece if ever you are interested). I'll also be hosting a free LS and grief meetup in the fall for folks to share their stories with grief and LS, so stay tuned for that. With love!
GOD Bless YOU. YOU ARE AMAZING. !! Loving…sharing…caring…SO STRONG 💝🎁💖😘
These videos are so edifying and clarifying! About 6 years ago in my early 60s, my gyn prescribed Clobetesol and said that I had LS. No other discussion. I used it until the itching stopped and went about my life. Fast forward, she died and I found another gyn, a younger one mind you, who didn't address it really. During the summer, I had intense perineal itching and started using Vitamin E on my genitalia. As my gyn was on vacation, I saw a Nurse Practitioner who prescribed an antifungal topical cream for 7 days but also recommended that I get a biopsy to confirm LS vs cancer. The biopsy, done by my regular gyn confirmed LS, which had also spread to other vulvar areas in small patches. She called me last week to tell me that I should use the Clobetesol daily for a month, then taper to every other day for a month, then, biweekly for my lifetime.
Until I heard these videos, I didn't know about rubbing it in on moist, warm skin for any specific time. I'm in the USA and grateful that I can see a specialist when I need to. Coconut oil didn't soothe my itching as a daily Vitamin E capsule, but fortunately, the itching subsided before the Clobetesol which I'm now using in the affected areas, to calm my skin in that delicate area.
Before these videos, I was unaware that so many suffer with this autoimmune disease. Thank you so much for being so vulnerable in your sharing!
This was more informative than the video! Thanks but in USA where medics just stare like deer in headlights!
Good to see someone talking about lichen sclerosis. I have suffered with it for many years off and on. I kept going back and forth to doctors describing pain, ripping, tearing etc and even gynaecologist didn't diagnose. Eventually dermatologist did. It is such a relief when things feel normal down there, as so used to pain or discomfort or itch. This is helpful for anyone just diagnosed. ❤
Hi, Ann. Thank you so much for watching and taking the time to comment. I'm glad you are doing well with your LS now. I agree, it's amazing when we don't feel any symptoms!
You are correct only a dermatologist will recognize.
In western USA medics scratch their head with No Idea ! Im still wondering about it being a fungal infection
Male sufferer here. I’m also in Canada. I’m 25 and was diagnosed by my GP over summer. Started noticing white patches that would grow in size on my genital area. Was prescribed Clobetasol by my GP and was referred to a Urologist. I am on a wait list so right now I’m in a grey zone just continuing treatment with Clobetasol for the time being.
I healed mine by stopping eating gluten. LS is an auto-immune disease.
Hi - I am impressed with your story. I got my diagnosis 15 years ago. Back then LS was very rare and where I live in Denmark almost no GPs knew about it. I was lucky that mine did but the only thing he could offer me was cortisol creme which I was too nervous about, so I embarked on a journey of natural healing methods. It took me 2,5 years to heal and I got completely rid of it. During the 2,5 years it had gotten really bad and I had lost quite a bit of my vulva and had some very unpleasant symptoms. So when I finally succeeded in loosing all symptoms and regenerating a normal skin, I was so happy.
What did you use please? Natural healing?
@@cjbenjamin8525 No wheat, sugar, meat, dairy, eggs, alcohol, smoke, coffee tea for 2,5 years. Correcting my circadian cycle: sleep in a dark room, go to bed at 22 hrs, sleep 8 hours. One hour daylight out of doors every day walking. No tight jeans - couldn't anyway for the pain. Removed all synthetics from my clothes and environment (from chairs and pillows) and no artificial creams (you should be able to eat your creams, soaps and shampoos). Drank at least two liters of water a day. Had a really good reflexzone therapist that treated me every week. I found a clairvoyant who helped me with psychological issues. Got out in nature a lot. Then finally I used MMS for a five months protocol that finally healed everything up and normalised my skin completely. MMS has however become prohibited in many countries and been censured out of the net, so it is difficult to find now. Try to check Jim Humble who rediscovered it. It is 13 years ago I stopped doing the cure and I am still good. I continue being careful with what I eat and still take care to sleep well in darkness and go out in daylight every day, because that is the basis for a normally functioning body and mind.
Btw I was already sensitive to perfumes, so that I did not have to remove but I think that is a good idea too.
Please help, how did you do it?
@@EarthAngel_1111 I will try to give a good answer in short form. I wrote an article about it. Will get back to you.
I appreciate your transparency! Thank you for your video!
Thank you so much! I am so sorry you had to go through such a long wait and be on your own with this condition. Sharing your story will make it easier for so many others. ❤
Definitely, that is the hope. I'm on a mission to change the future of LS. Thanks so much for watching and taking the time to comment. 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
For years I suffered with vaginal itching so bad it would bleed I accidentally discovered when I quit drinking coffee it completely went away
Thank you for sharing.
My start on this journey was similar to yours. At beginning of October say a gyn NP who diagnosed me and sent me home with a two paragraph description and a tube of clob and said to come back in a month. I was applying it just like you-a big glop, swipe, swipe, done. I left there thinking this was kind of like a chronic yeast condition but then fell down the rabbit hole of online info and was horrified at how much I didn't realize that this is a serious disorder. I am still searching for a knowledgeable provider in my community. Thank you for your videos.
What country?! ! Im still leaning towards a fungal infection
Thank you so much. Your videos and information are so comforting invaluable to those of us who suffer from lichen sclerosus❤
I've had this for about 2 years. Was diagnosed by my OBGYN a year ago. She recommended over the counter creams (I was already using that burned for a few seconds) and to check back in 3 months if not better. I got covid and my mom passed away a month later so just went back to the Obgyn recently. She prescribed Premarin cream and a steroid cream. Helping some. Thanks for your openness. This is also helpful.
Long story short, now only uses cream twice a week instead of daily. You are welcome!
Haha, fair enough. I apologize for making long videos.
I also want to add that it's comforting to hear that you started off applying it 'wrong' (2-3 times every day for 9 months and on a dry vulva without rubbing it in) AND your recovery took a very long time and was up and down, where you had a couple of months of it all going well and then a month of pain and discomfort then healing again.
Also, the info on pelvic floor physio.
Now you are in remission.
I needed to hear this! Thank you 🥰
Just Scroll on if of no interest....not compulsory to view. Perhaps mid flare up .....as does make us tetchy. 😉☺️
This video helped me understand in a lot of different ways: sex/pelvic floor therapy/correct application of clob Thank you
Wish she would have just stated it at the beginning and left all the back story, post answer..
The way you described your way of applying this creme is hilarious. I am trying to see the humour in our horrible disease.
Hi, Amber. Thanks for watching and taking the time to comment. Ha! I'm glad. Humor can be helpful for processing emotions and feelings
Thank you very much for sharing your LS journey in a clear and concise manner. I haven't found a Dr who is aware enough of LS to handle this and it's frightening. I keep hearing, just go to a GYN, but I think it's beyond many general Drs. I've told other Drs and they were surprised. Told me they didn't know of it affecting the genitalia! I was told by one Dr that there's a Lichen Society, but haven't looked into it- too busy trying to find a Dr! Blessings! 🌹
Hi Justine! Unfortunately, this is super common. Doctors have a lot of catching up to do when it comes to understanding, diagnosing, and treating LS. Check out this link - www.lssupport.net/searchable-lichen-sclerosus-provider-database/ - we have a provider directory that includes providers from across the globe that treat LS. It's referral based, which means everyone in there was recommended by a patient with LS. Please read the disclaimer. Hopefully this helps!
Justine I feel the same way. I seen my regular PCP who then referred me to a woman's clinic. They looked down there and I heard not only the doctor gasp but the nurse that was with her. I was written a prescription for the topical steroid and that was it. No pamphlets, no referrals, no instructions on how to apply this, just sent on my way. I don't think there is enough research on this, there is not enough clinical trials, there is NOT enough information on this and it scares me too death. As I said with this disorder I have to worry about my vaginal hole closing up, my clitoris has now been deformed and I can't achieve orgasm anymore, I worry about cancer, I worry about my urethra closing up. The general public doesn't seem to worry about this disorder enough to push for more testing and treatment options. Good luck in your journey you are definitely not alone.
There are some excellent support groups on FB.
Thank you for your information wish I had known earlier to get information on LS I'm 73 and only recently have subscibed so much to read
Greetings from South Africa
That's exactly how I learnt to manage steroids with psoriasis and atopic dermatitis - but spreading usage instead of applying it daily. Now I'm under suspicion for LS (beginning stages, I'm 25yo) which sucks, but because I have other autoimmune skin diseases, I guess it made me quicker to notice any symptoms). Thanks a lot for your content. I'm seeing a dermatologist in a couple days to present the situation.
Ohh, good luck at the derm and keep me posted on how it goes! Good thing with LS is the earlier it's caught and treated, the less likely it is to progress and scar.
This may respond to vitamin B1 Thiamine. Start with 100mg increase to 400mg after a few days. Split the 400mg dose into am & pm. Hope it helps.
Thanks, I'm OK :) As the video mentions, I'm not only in remission, but haven't had any symptoms for over three years now :) With love,
Gill, is there literature on Vit B1 helping this? I can’t find anything
I just started b1 2 weeks ago, but not for LS. Can you tell me anything further about this? I am in a bad way, and have no doctor following me.
Thankyou for sharing your journey & advice - its incredible how alone you do feel once receiving this diagnosis and unfortunately have to navigate & explore self help alone! I was handed a tube of cream and a piece of paper with basic explanation. I now realise i too have lost my labia completely and have fusing of the CH "loss of skin architecture, erythema on labia minora & labial fusing with CH" - i had no idea what any of that meant!! I found it weird i too have suffered chronic back/pelvic girdle pain for many years - and have arthritis L5/L4/S1 too... wonder if there is a connection 🤔. Do you have any other autoimmune disorders? I have Hypothyroidism...and see there is a link to this too.
I can totally relate, it seems crazy but after reading some of Dr Caroline Leafs book, Switch on Your Brain. I learned how to switch off stress. Only problem now is i didnt continue with that path, and started looking into so many things- gut biome, thryrode, stress again, etc. and so fell off track. Bottom line is that mental health stress is a key factor.
Hi Jaclyn thank you so much for your videos I find them to be so informative and I appreciate you so much 💖 my question is do we have to do pelvic floor therapy or is it ok to just do Kegels 😅 I just got diagnosed with LS while pregnant and I have been so emotional 😭 I’m just trying to learn as much as I possibly can it’s so hard to deal with this much all while being pregnant 😢 I’m scared but feel a little better since finding your videos again thank you so much 💕
I would recommend everyone with lichen sclerosus at minimum get an assessment from a pelvic floor PT. Kegels is actually almost never encouraged as it makes most conditions worse (there are only very specific instances were these will be prescribed. As of 2023, I partnered with LSSN and my 2023 videos are now on their channel @lichensclerosussupportnetwork - check out this video I did with a PT about lichen sclerosus, painful sex, and the pelvic floor th-cam.com/video/mxQjC3jEoYg/w-d-xo.html - be sure to subscribe to our channel so you don't miss any of my/our new content :) It is A LOT to deal with for sure and you are not alone in these feelings. If you ever need support, I co-host FREE LS virtual meetups every other Saturday - www.lssupportnetwork.org/connect and I also do 1:1 support calls if group calls isn't your cup of tea or you want longer, more individualized support - learn more at www.lostlabia.com/supportcall + be sure to get my FREE LS eBook at www.lostlabia.com/lsebook
Thank you so much for replying. 💜
@@lesliemarquez9405 🥰🥰🥰🥰
The prescription creams only made my symptoms worse. I began using A an D ointment (without the zinc oxide) once a day 2 to 3 times a week. It’s been a year and no itching ever! It was a game changer!!
Hi Jacklyn! I love all your videos. I also am a Canadian, living just north of Toronto. I was very surprised to hear that you are Canadian! Where in Canada do you live?
Toronto, Ontario! Was nice seeing you at the LS meetup tonight
I’m also in Toronto! I can not get any gyne or OBGYN to diagnose me with LS! It’s over a year wait for any specialist here in Ontario. Any specialist you can recommend???
Did you had to see a GYN that SPECIALIZED in treating LS instead or just any GYN would be okay?
Thank you! Great job. Very helpful. 👍🏻❣️
You are so welcome! Thank you for watching and supporting my channel. I super appreciate you!
I’ve heard that the ointment is better than the cream. Less harsh. I use once a week.
Finding out about progress, what to expect etc. is vital. There is no official advice about this in the UK/from the NHS.
I had a procedure called mona lisa, it put me into remission for a few years, its just now coming back.
Very helpful info
Thank you!
I've been diagnosed about five years ago. I have gone through the menopause. Move Drs hadnt seen a GP in four yrs. The situation is very difficult as I couldnt get an appointment in the last three yrs. I've been terrified of it turning cancerous. Luckily I'm on a steroid cream now. Doesnt feel as sore. Sex has been non existent as the entrance seems to have shrunk somewhat. Not sure what the future holds now
We do not have national Healthcare here,but it is getting to where you have to wait months
I used steroids to help with the disease but there would be flare ups. It was as though my life was taken over by the LC. My quality of life had diminished.
Then my gynae advised me to try the Juliet laser procedure. She advised that I needed 3 treatment 4-6 weeks apart followed by a single top up treatment every 18 to 24 months.
I had my first Juliet treatment in December 23 followed by the second treatment yesterday 6 weeks later.
In the 6 weeks between the procedures I didn’t use any steroid.
My quality of life felt like it had gone back to normal before the LC.
I will have my 3rd Juliet treatment at the end of February.
The first treatment was extremely painful I could hardly tolerate the procedure. The second treatment was a lot better, I guess the first treatment had already started to strengthen my vaginal walls.
In my mind using steroid is counterproductive, the viscous circle of steroids and flare ups is quite challenging.
I had to pay for the treatment and it’s not cheap. It’s early days but I am hoping that I don’t have to rely on steroids again.
I use Lalenas oil instead of creams for moisturiser.
Camlaude Lab. Spain
These productos help alot Hidratant acid hialuronic.
Thank you.
Over the last 3 years my man and my best friend were dying of cancer (they recently passed). My LS flared up and has stayed bad for the last 3 years. Vulva is gone, lichen lesions are spreading. I cannot tolerate Clob…my GP doesn’t know what to do, and my gynaecologist has not examined me for 10 years. I am in New Brunswick, and I feel like I am at the end of my rope. I use coconut oil, but the itching and pain prevents me from sleeping well. I am in constant distress. I don’t see a future.
I am so sorry to hear that. I cannot imagine the heaviness you have had to carry for so long. That would be almost unbearable for anyone. I see and hear you. NB is hard; I know there aren't too many specialists in NB. Have you tried LSSN's provider directory at www.lssupportnetwork.org/providers - maybe someone is listed that you haven't seen before. You may have something called refractory lichen sclerosus - I talk about that and explain what it is and what to do in the second half of this podcast episode - open.spotify.com/episode/6QlGv0siB4KOBjr5VmrEoj?si=ItsOdvifQcSXojDih0DhMA In the meantime, perineal ice packs and topical lidocaine can help with pain and itch. Your GP may also be able to prescribe medication such as amitriptaline temporarily to help with the itch. Sometimes intralesional steroid injections are required, maybe see if your GP can send you to a hospital for that. I also do have a page full of crisis support resources here: www.lostlabia.com/crisis With love, Jaclyn
can you tolerate tacrolimus. it's an alternative to clobetasol. I use clobetasol and cut out all inflammatory foods and carbs, in remission right now. th-cam.com/video/vBCihbuID1Y/w-d-xo.htmlsi=FX4OntCOQSS1HGhU
@@thelostlabiachronicles thank you for your reply. I will give these suggestions to the new doctor I am seeing in October. In the meantime a compounding pharmacist made me some boric acid suppositories that have lessened the itching dramatically.
So sorry to hear this. I too am desperate to find relief. The turning point was discovering Functional Medicine. I read Jeff Bland's book and knew this was the way forward. LS needs to be treated holistically, starting with the gut biome and food sensitivities. There are always other contributing factors that you may not be aware of. One of the triggers of Autoimmune Disease is leaky gut triggered by the usual allergens - dairy, gluten, soy etc. Start digging and begin the journey. Hang in there!
Vaseline works way better for me than coconut oil. Especially at night.
Do you ever have flare ups?
Great video thanks ❤
Hi, Nancy! Thank you so much for watching and commenting! I super appreciate it
Hi . What is the symptoms please? Iv had burning down below & im red & inflamed. Please reply me. I’m worried. I’m in Scotland. X
Hi, Dorothy. Thanks for watching and leaving a comment. I'm so sorry to hear you are in so much pain. It's absolutely miserable, I know. I have a whole video that explains LS signs and symptoms that you can watch here: th-cam.com/video/rJ1H1bf1unI/w-d-xo.html
Go see your doctor asap.
❤
What is Lichens planus
Anyone here are in a good relationship with their genitals? (Legit question)
No, not a good relationship. Constant pain and itch and no sex. Clobetasol helps but doesn’t cure. It’s a curse.
Yes, I actually had an ok "relationship" pre LS but there was room for improvement , and LS was an impetus to develop healthier and stronger connection w my body and deeper appreciation for my vulva! This did not mean I do not feel pain or frustration, I was just more in touch with all the feelings, proceed them better, and cherished myself more.
Too much eyeliner.
I don't wear eyeliner, but I think her eyeliner is attractive.
@@lindakautzman7388like your comment . The Peggybuetow person instead of listening to the content - she came away from this only concerned about the speaker’s make up ?
I think she's very attractive I think you're very mean
@peggybuetow1026 She is an amazing, beautiful soul helping those of us suffering from this disease. This is not a makeup video.
@peggybuetow why do you feel the need to share your unwarranted negative opinion?
Stem cells and prp should at least be a last alternative for people like me now who's failed steroid creams and one surgical procedure I'm a guy my quality of life is at 0% I think it's worth a chance this condition is going to make me crazier than I already am