I recently started having issues. After treating an infection with a steroid/antibiotic, I began using Membrasin, it’s been very good. A seabuckthorn, hylaronic acid and lactic acid formulation. Thanks for a great review and sharing!
Amazing! Thank you for sharing. I'm so glad you found what works for you. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's RUclips channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork
Two questions: 1) I noticed you put Aquaphor on your Amazon site but didn't note it in your review. What are your thoughts about it? 2) Which of these products do you trust not to stain clothes? Thank you in advance for your comments!
Saw a dermatologist last week and he claimed I was a mess. I’ve already lost a whole layer of skin from vagina to anus and my labia sides were already fused to the skin (not sure if I’m explains that properly). He claims I have had this for approximately 20 years. I was shocked. I’ve seen a few gynaecologists in the past years as I’ve had very painful intercourse for many years and not one of them mentioned this. He put me on five different creams and meds, took a lot of blood work (checking for other autoimmune diseases as I’ve lost 20 lbs. in the last few months. Down now to 87lbs.) He took biopsies of both hips and says will probably do one on the vagina when I go back. He’s going to wait until he gets a report from my oral surgeon, as it’s in my mouth as well, the decide on what to do next. I honestly loved him for being so thorough. Never met such a caring doctor. He spent two hours with me and my husband.
@@thelostlabiachronicles of course I don’t mind. His name is Dr. Gary Sibbald. He is in Mississauga. There are a few dermatologists in his office. I was scheduled with another one of the doctors but my appointment wasn’t until the end of June. I called the office to see if there were any cancellations and I was lucky to have his nurse answer. I explained my situation and she got me in quickly with him.
@@karenturgeon7616 Thank you SO MUCH for sharing this. I'm always looking for doctors to recommend to folks in TO/GTA. TO's doctors have such a long waitlist it can be super discouraging.
@@thelostlabiachronicles you’re very welcome. I’m sure his wait list is long as well. As I said I was lucky that his nurse answered when I called. He would certainly be worth the wait though.
Thank you so much for presenting this! I am so grateful! Will look forward to trying your favorites! Recently my condition re-activated! By using supplements and yes, Desitin ointment (and the clobetasol ointment per OBGYN instructions) things are getting “back to normal” … well, sort of normal. I have needed this info.
I take CBD oil by mouth internally. It helps in lots of ways, although sometimes I wonder if it is doing anything at all. If I don’t take it a few days in a row, that is when I realize it’s benefits!
Glad you found something that helps. I sometimes take CBD baths and use CBD vaginal suppositories (not sure that helps though, but someone sent them to me so I figure may as well try them). With love, Jaclyn
Another exceptionally helpful video. I discovered something called vmagic. It has various organic oils like olive oil, avocado, plus honey. Pretty good stuff (a bit pricey though) imo, but I’m realizing one type is not enough. Thank you again for such good advice!
Hi, Sage! Yes! I've heard fantastic things about VMagic. I don't use it only because it's not in my budget. If they sent me some, I'd try it, but overall I'm happy with cheaper products. And yes, sometimes we need to mix and match and everyone's preferences will vary :) P.s. I responded to your email, but not sure if you got it since I"m registered as a business, sometimes my emails go to spam or promo.
Thanks for your very informative videos on such a difficult issue!❤ Also, wondering about castor oil, any info if it would be good? It's known to be great for so much, what's your thoughts?
Thanks, Jane! Hopefully you can find something that works for you in AUS. Good luck! Let me know what you find so I can share with others in AUS with LS. Thanks as always for your support
@@thelostlabiachronicles Hi Jaclyn, like you I have been using coconut oil, but have purchased the Yes OB lubricant which is amazing. Also in Australia we have Moo Goo, and they have a terrific range of skin products. I am using the Eczema & Psoriasis cream, which soothing anti inflammatory. It is really nice to use they have 2 types to choose from, so I feel I have some options. Hope this is helpful to share. Jayne
@@jaynesellers7794 Moo goo! That's such a cute name and thank you for sharing that with me. I chat with lots of folks in AUS so it's nice to have product recommendations they too can get access to. Yes, I love the OB lube too :)
I try to buy from Canada almost all of my skin products. My issue is classified as Lichen planus but treated similar to LS. Canada’s products, I have found, suit my condition better than those I find here. My makeup is also from Canada. I cannot use titanium dioxide at all…it aggravates the rashes I get. (an FYI)
Hi! Thank you so much for watching and taking the time to comment. I super appreciate this. I don't have knowledge on this in terms of there being studies on using jojoba oil as an emollient for LS, but anecdotally, many folks like using this as an emollient. It is nice and hydrating and just 1 ingredient. My advice for any new vulvar product is to do a patch test first. If you're not sure what I mean by that, I have a blog post that addresses this in-depth which you can read at www.lostlabia.com/patchtest - with love, Jaclyn
Thank you so much for all your videos, I'm so happy I found them. Can you please recommend me an emollient and a lubricant that doesn't give yeast, Im being having this yeast infection problem for over 6 months now for the first time in my life and about 2 month with LS , thats what my gyn told me last visit, Im trying to find another doctor but not lock yet here in South Fl. Your videos have helped me a lot, thank you
Ohh, that's a bit of a tough question because everyone reacts differently to emollients. I will say that coconut oil, anecdotally, tends to promote yeast in *some* folks. I use coconut oil and haven't experienced a yeast infection. Have you tried the provider directory by LSSN - www.lssupport.net/providers - it's a directory of LS doctors across the globe; maybe you can find someone there. I would definitely ask the yeast/emollient question to your doctor when you secure one; a gyne or derm would be best equipped to explore that with you :) With love, Jaclyn
@@thelostlabiachronicles Yes, I tried the directory , there are two doctors in this area, but when I checked out their information I see that they are not specialist in LS. Thank you
I love your video. My question is the only emolient i was aware of is oilatum. Is this any good. also i have liquid coconut oil , can i possibly use this. I have had this ls for over a year now. I am 77 yrs. old just for your info. Thanks in advance
Hi, Carol. I'm not familiar with oilatum, but the thing with emollients is there is, for the most part, no rules on which is good or bad. A good emollient is one that works for you and your body. Always patch test products first though to make sure it doesn't cause any reactions. Learn more about patch testing at www.lostlabia.com/patchtest - With love, Jaclyn
Do you find that summer time heat aggravates your LS. My genital area gets slightly inflamed but my LS doesn’t become worse. However, my skin down there becomes red and burns if I use a feminine wipe after urination/deification. My nurse practitioner recommended a VERY basic, low ingredient baby wipe..
I brought some of the yes ob after watching your video. The one I’ve got has like small grains in it, is it suppose to have that and will they make me sore?
Yes, those were in mine as well. I think it's just a formula thing; I never personally had any issues with it, and also I usually warm it up in my hands first which helps break them down. If they cause you issues, I would reach out to their customer service and let them know (they have really good customer service). I never had issues, but we all respond differently to products so I cannot tell you with certainty whether it will or will not cause you to become sore. With love, Jaclyn
Can you use these while your using the steroid? Wait a hour then apply one of the creams you suggested? I have flared after 3 months off steroid. Back to steroid again. I have noticed if I walk around more with more friction I get more irritated so this may help also with getting to feeling better. Thank you
Yes, absolutely. Typically, doctors recommend waiting 30 minutes or so after you apply your steroid, and then you can apply other topicals like emollients or hormonal creams after as per directed. When I used to walk I was super dry and it irritated my vulva. I apply emollients about 2-5 times a day depending on how active I am, and then Clob before bed.
Hi there I've been diagnosed with ls back in 2003 ...wasn't aware can't use soap to wash down there ...I can only use dove sensitive wash and dye free perfume free laundry det ...so now they recommend u don't use any soap to wash down the with ...what body wash or body gel wash for this can I use ty
So you can use soap if you want, but most gyne/derms will say warm water is more than sufficient to wash the vulva. However, if you, like me, still prefer soap, it's recommended to use nourishing cleansers that are scent free - I use the white bottle from Sweet Spot Labs but everyone is different and really it's about what works for your body. With love, Jaclyn
I just saw a video with dr. Liz Venner. She says that a Z-plastic can be helpfull with LS ... My LS-doctor said this is not oke as trauma to that skin can worsen or trigger LS .. Anyone experience with a Z-plastic?
Hi, Amber. Thanks for watching and taking the time to comment. I've never heard of Z-Plastic. Can you link Dr. Venner's video and any research (RCTs) on Zplastic :) Thanks in advance ! I appreciate you.
Hi thank you for making these videos, I’m trying to watch them all! My doctor thinks I might have LS, I didn’t have any symptoms but just yesterday I started to have some, I’m very scared to get the biopsy. Did you ever get that done and does it hurt? once again thanks for these videos stay well!
Hi! Aw, thank you for watching and taking the time to comment. Did your doctor say why they suspect LS? I actually do have two posts on my Instagram where I explain the difference between diagnosis via clinical examination and via biopsy. I also highly recommend you check out my biopsy tips post where I give a ton of before, during, and after biopsy tips. I'm @thelostlabiachronicles on Instagram. I hope your biopsy goes as smoothly as possible.
Hi, thanks so much I will check it out, I am going to write you an email, I’m going to see what the doctor says tomorrow, I’ll be in touch! Thank you again!
Just wondering when using emollients the underwear get very stained what do you ladies do for this problem? I feel using a organic panty shield sometimes in its self is irritating. I read somewhere that you should buy new underwear every 6 months.
Personally, I do not have this problem. Most of the products I use are clear, and I have never really noticed staining issues, but we are all different. By default, I do tend to buy new underwear every 6 months. I did read somewhere that one person with LS uses Dawn dishsoap to get stains out, but I can't personally speak to that. With love, Jaclyn
I use organic cotton liners. I use organic hexane free cold-pressed castor oil in a dark glass bottle as an emollient. Use steroid ointment Advantan Fatty Ointment methylprednisolone aceponate 0.1% W/W twice a week. If flare up then start 5 days steroid in a row again.
These are all adjuncts to your treaetment plan. Steroids or whichever treatment plan your doctor put you on is what will help slow the progression of the disease, manage symptoms, reduce chances of developing vulvar cancer, etc. These are moisturizers which, in addition to your treatment plan, can help with the dryness that sometimes accompanies steroid use, reduce chaffing and friction which can cause irritation, create a barrier between your skin and external irritants, etc.
Yes, and I gave you instructions last time on how to put your subtitles on in Arabic, as RUclips does not allow me to do that for you. Please check my last comment for an explanation of how you can turn them on.
Last time you commented this I sent instructions on how to change your settings. Here is a video that explains how to do it. www.google.com/search?q=how+to+turn+on+autotranslate+in+youtube&rlz=1C1CHBF_enCA984CA984&oq=how+to+turn+on+&aqs=chrome.1.69i57j69i59j0i512l3j0i20i263i512j0i512l4.3260j0j7&sourceid=chrome&ie=UTF-8#kpvalbx=_BTp0YqWqJ4S6tQaixbLIBw32 essentially you just go the the cog wheel *settings*, then you click subtitles, and then you just click the language you want.
I am certain you certainly know what you are talking about but if you could just compress a bit as not everyone has tons of time to just listen to chit chat.
![Hunxho - Ball Forever [Official Video]](http://i.ytimg.com/vi/nki9ZTF9Uls/mqdefault.jpg)
![Twenty One Pilots - “The Line” (from Arcane Season 2) [Official Music Video]](http://i.ytimg.com/vi/E2Rj2gQAyPA/mqdefault.jpg)
Thank God for your page! It's a much needed resource.
Aw, Teresa. Thank you so much. I'm so glad you find my content helpful. I appreciate you watching and taking the time to comment
Silver colloidal gel helped me tremendously
I recently started having issues. After treating an infection with a steroid/antibiotic, I began using Membrasin, it’s been very good. A seabuckthorn, hylaronic acid and lactic acid formulation. Thanks for a great review and sharing!
Amazing! Thank you for sharing. I'm so glad you found what works for you. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's RUclips channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork
Very helpful. I have just watched a few of your videos today as I am newly diagnosed.
Two questions: 1) I noticed you put Aquaphor on your Amazon site but didn't note it in your review. What are your thoughts about it? 2) Which of these products do you trust not to stain clothes? Thank you in advance for your comments!
Saw a dermatologist last week and he claimed I was a mess. I’ve already lost a whole layer of skin from vagina to anus and my labia sides were already fused to the skin (not sure if I’m explains that properly). He claims I have had this for approximately 20 years. I was shocked. I’ve seen a few gynaecologists in the past years as I’ve had very painful intercourse for many years and not one of them mentioned this. He put me on five different creams and meds, took a lot of blood work (checking for other autoimmune diseases as I’ve lost 20 lbs. in the last few months. Down now to 87lbs.) He took biopsies of both hips and says will probably do one on the vagina when I go back. He’s going to wait until he gets a report from my oral surgeon, as it’s in my mouth as well, the decide on what to do next. I honestly loved him for being so thorough. Never met such a caring doctor. He spent two hours with me and my husband.
Hi, Karen. Thank you so much for sharing a part of your journey
@@thelostlabiachronicles of course I don’t mind. His name is Dr. Gary Sibbald. He is in Mississauga. There are a few dermatologists in his office. I was scheduled with another one of the doctors but my appointment wasn’t until the end of June. I called the office to see if there were any cancellations and I was lucky to have his nurse answer. I explained my situation and she got me in quickly with him.
@@karenturgeon7616 Thank you SO MUCH for sharing this. I'm always looking for doctors to recommend to folks in TO/GTA. TO's doctors have such a long waitlist it can be super discouraging.
@@thelostlabiachronicles you’re very welcome. I’m sure his wait list is long as well. As I said I was lucky that his nurse answered when I called. He would certainly be worth the wait though.
@@karenturgeon7616 So glad the nurse answered you and got you in
Thank you so much for presenting this! I am so grateful! Will look forward to trying your favorites! Recently my condition re-activated! By using supplements and yes, Desitin ointment (and the clobetasol ointment per OBGYN instructions) things are getting “back to normal” … well, sort of normal. I have needed this info.
Ah, it's my pleasure. I'm glad you find my content helpful
I take CBD oil by mouth internally. It helps in lots of ways, although sometimes I wonder if it is doing anything at all. If I don’t take it a few days in a row, that is when I realize it’s benefits!
Glad you found something that helps. I sometimes take CBD baths and use CBD vaginal suppositories (not sure that helps though, but someone sent them to me so I figure may as well try them). With love, Jaclyn
Thank you..looking forward to trying the coconut oil... here's hoping
Another exceptionally helpful video. I discovered something called vmagic. It has various organic oils like olive oil, avocado, plus honey. Pretty good stuff (a bit pricey though) imo, but I’m realizing one type is not enough. Thank you again for such good advice!
Hi, Sage! Yes! I've heard fantastic things about VMagic. I don't use it only because it's not in my budget. If they sent me some, I'd try it, but overall I'm happy with cheaper products. And yes, sometimes we need to mix and match and everyone's preferences will vary :) P.s. I responded to your email, but not sure if you got it since I"m registered as a business, sometimes my emails go to spam or promo.
Thanks for your very informative videos on such a difficult issue!❤
Also, wondering about castor oil, any info if it would be good? It's known to be great for so much, what's your thoughts?
Thanks Jaclyn for such an informative video, I will be checking out some products, not sure what's available in Australia but will find out. 🙂
Thanks, Jane! Hopefully you can find something that works for you in AUS. Good luck! Let me know what you find so I can share with others in AUS with LS. Thanks as always for your support
@@thelostlabiachronicles Hi Jaclyn, like you I have been using coconut oil, but have purchased the Yes OB lubricant which is amazing. Also in Australia we have Moo Goo, and they have a terrific range of skin products. I am using the Eczema & Psoriasis cream, which soothing anti inflammatory. It is really nice to use they have 2 types to choose from, so I feel I have some options. Hope this is helpful to share. Jayne
@@jaynesellers7794 Moo goo! That's such a cute name and thank you for sharing that with me. I chat with lots of folks in AUS so it's nice to have product recommendations they too can get access to. Yes, I love the OB lube too :)
I try to buy from Canada almost all of my skin products. My issue is classified as Lichen planus but treated similar to LS. Canada’s products, I have found, suit my condition better than those I find here. My makeup is also from Canada. I cannot use titanium dioxide at all…it aggravates the rashes I get. (an FYI)
Nice, what are the main Canadian sites you purchase from?
Just found this site. Informative video. I'd like to know where these products were purchased. Thank U
Jaclyn -- Thank you for the very informative video. Do you have any information or knowledge on using jojoba oil as an emollient? Many thanks.
Hi! Thank you so much for watching and taking the time to comment. I super appreciate this. I don't have knowledge on this in terms of there being studies on using jojoba oil as an emollient for LS, but anecdotally, many folks like using this as an emollient. It is nice and hydrating and just 1 ingredient. My advice for any new vulvar product is to do a patch test first. If you're not sure what I mean by that, I have a blog post that addresses this in-depth which you can read at www.lostlabia.com/patchtest - with love, Jaclyn
Can you use A&D ointment?
Would you say any of these products are healing? Been on clobetesol for over 3 months and still not healed up on in remission.
I’ve learned more from you then my gyn!
Wondering if the Alni CBD is available somewhere for less then $28 shipping ?
Hi, Julia. I'm not sure I always just order from Alni's website. Perhaps you can contact the owner via Instagram and see?
Thank you so much for all your videos, I'm so happy I found them. Can you please recommend me an emollient and a lubricant that doesn't give yeast, Im being having this yeast infection problem for over 6 months now for the first time in my life and about 2 month with LS , thats what my gyn told me last visit, Im trying to find another doctor but not lock yet here in South Fl. Your videos have helped me a lot, thank you
Ohh, that's a bit of a tough question because everyone reacts differently to emollients. I will say that coconut oil, anecdotally, tends to promote yeast in *some* folks. I use coconut oil and haven't experienced a yeast infection. Have you tried the provider directory by LSSN - www.lssupport.net/providers - it's a directory of LS doctors across the globe; maybe you can find someone there. I would definitely ask the yeast/emollient question to your doctor when you secure one; a gyne or derm would be best equipped to explore that with you :) With love, Jaclyn
@@thelostlabiachronicles Yes, I tried the directory , there are two doctors in this area, but when I checked out their information I see that they are not specialist in LS.
Thank you
Do you use these over the Clobetasol or between days?
I love your video. My question is the only emolient i was aware of is oilatum. Is this any good. also i have liquid coconut oil , can i possibly use this. I have had this ls for over a year now. I am 77 yrs. old just for your info. Thanks in advance
Hi, Carol. I'm not familiar with oilatum, but the thing with emollients is there is, for the most part, no rules on which is good or bad. A good emollient is one that works for you and your body. Always patch test products first though to make sure it doesn't cause any reactions. Learn more about patch testing at www.lostlabia.com/patchtest - With love, Jaclyn
Do you find that summer time heat aggravates your LS. My genital area gets slightly inflamed but my LS doesn’t become worse. However, my skin down there becomes red and burns if I use a feminine wipe after urination/deification. My nurse practitioner recommended a VERY basic, low ingredient baby wipe..
I also use sensitive skin baby wipes, but lately I have been rinsing them a bit before using them just in case they still contain something.
Install a bidet. It is healthier, cheaper and less wasteful.
I brought some of the yes ob after watching your video. The one I’ve got has like small grains in it, is it suppose to have that and will they make me sore?
Yes, those were in mine as well. I think it's just a formula thing; I never personally had any issues with it, and also I usually warm it up in my hands first which helps break them down. If they cause you issues, I would reach out to their customer service and let them know (they have really good customer service). I never had issues, but we all respond differently to products so I cannot tell you with certainty whether it will or will not cause you to become sore. With love, Jaclyn
Do any of these products leave oily marks on your undies and clothes. I don’t want to be worried about that. Thank you.
Can you use these while your using the steroid? Wait a hour then apply one of the creams you suggested? I have flared after 3 months off steroid. Back to steroid again. I have noticed if I walk around more with more friction I get more irritated so this may help also with getting to feeling better. Thank you
Yes, absolutely. Typically, doctors recommend waiting 30 minutes or so after you apply your steroid, and then you can apply other topicals like emollients or hormonal creams after as per directed. When I used to walk I was super dry and it irritated my vulva. I apply emollients about 2-5 times a day depending on how active I am, and then Clob before bed.
I like Julva by Dr Anna.
Ohh, I have heard about it but haven't tried it yet! Thanks for sharing :) With love, Jaclyn
Hi there I've been diagnosed with ls back in 2003 ...wasn't aware can't use soap to wash down there ...I can only use dove sensitive wash and dye free perfume free laundry det ...so now they recommend u don't use any soap to wash down the with ...what body wash or body gel wash for this can I use ty
So you can use soap if you want, but most gyne/derms will say warm water is more than sufficient to wash the vulva. However, if you, like me, still prefer soap, it's recommended to use nourishing cleansers that are scent free - I use the white bottle from Sweet Spot Labs but everyone is different and really it's about what works for your body. With love, Jaclyn
I use Cetaphil. Very gentle rubbing. Rinse with cold! water.
My dermatologist suggested to use eubos. It works very well for me
Do any of these emoliants cause uti's?
Would castor oil help ?
I just saw a video with dr. Liz Venner. She says that a Z-plastic can be helpfull with LS ... My LS-doctor said this is not oke as trauma to that skin can worsen or trigger LS .. Anyone experience with a Z-plastic?
Hi, Amber. Thanks for watching and taking the time to comment. I've never heard of Z-Plastic. Can you link Dr. Venner's video and any research (RCTs) on Zplastic :) Thanks in advance ! I appreciate you.
Hi thank you for making these videos, I’m trying to watch them all! My doctor thinks I might have LS, I didn’t have any symptoms but just yesterday I started to have some, I’m very scared to get the biopsy. Did you ever get that done and does it hurt? once again thanks for these videos stay well!
Hi! Aw, thank you for watching and taking the time to comment. Did your doctor say why they suspect LS? I actually do have two posts on my Instagram where I explain the difference between diagnosis via clinical examination and via biopsy. I also highly recommend you check out my biopsy tips post where I give a ton of before, during, and after biopsy tips. I'm
@thelostlabiachronicles on Instagram. I hope your biopsy goes as smoothly as possible.
Hi, thanks so much I will check it out, I am going to write you an email, I’m going to see what the doctor says tomorrow, I’ll be in touch! Thank you again!
@@bohobella7247 Sounds great
Just wondering when using emollients the underwear get very stained what do you ladies do for this problem? I feel using a organic panty shield sometimes in its self is irritating. I read somewhere that you should buy new underwear every 6 months.
Personally, I do not have this problem. Most of the products I use are clear, and I have never really noticed staining issues, but we are all different. By default, I do tend to buy new underwear every 6 months. I did read somewhere that one person with LS uses Dawn dishsoap to get stains out, but I can't personally speak to that. With love, Jaclyn
I use organic cotton liners. I use organic hexane free cold-pressed castor oil in a dark glass bottle as an emollient. Use steroid ointment Advantan Fatty Ointment methylprednisolone aceponate 0.1% W/W twice a week. If flare up then start 5 days steroid in a row again.
Are these products just a deterrent from flareups or can it be used in place of a steroid cream during a flareup?
These are all adjuncts to your treaetment plan. Steroids or whichever treatment plan your doctor put you on is what will help slow the progression of the disease, manage symptoms, reduce chances of developing vulvar cancer, etc. These are moisturizers which, in addition to your treatment plan, can help with the dryness that sometimes accompanies steroid use, reduce chaffing and friction which can cause irritation, create a barrier between your skin and external irritants, etc.
🙌❤
😍🥰
Why don you use your products in rotation ?
Hi thank you for this video but I need to translate it to Arabic to understand plz .. I told you befor
Yes, and I gave you instructions last time on how to put your subtitles on in Arabic, as RUclips does not allow me to do that for you. Please check my last comment for an explanation of how you can turn them on.
Last time you commented this I sent instructions on how to change your settings. Here is a video that explains how to do it. www.google.com/search?q=how+to+turn+on+autotranslate+in+youtube&rlz=1C1CHBF_enCA984CA984&oq=how+to+turn+on+&aqs=chrome.1.69i57j69i59j0i512l3j0i20i263i512j0i512l4.3260j0j7&sourceid=chrome&ie=UTF-8#kpvalbx=_BTp0YqWqJ4S6tQaixbLIBw32 essentially you just go the the cog wheel *settings*, then you click subtitles, and then you just click the language you want.
Show products better
I am certain you certainly know what you are talking about but if you could just compress a bit as not everyone has tons of time to just listen to chit chat.
Listen at 2x speed. All the info is so useful. Don’t compress it.