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Thank you this is very helpful

Thank you! This was an amazing discussion. I learned a lot that helps explain some of my issues. My labia minora are mostly gone but fused at the top blocking my urethra. My GYN referred me to Dermatology. I discovered that I had both bacterial and fungal infections in my vulva. I also have chemical sensitivity that has caused problems with treatment plans. After months of waiting I finally am getting Patch Testing done to find out what chemicals I am reacting to. Compounded estrogen had to be stopped months ago and I had to reduce my Clobetasol. This discussion definitely helped me understand that I need to find the right medication to get me less miserable.

This is my first video of yours. Thank you! You gave me hope. Yes on the pleasure video for lichen sclerosis.

thanks for the photo vault tips!! solved my issue about keeping photos private ;-)

If anyone is using an app for the iPhone and is happy with it I would appreciate the name. TIA.

Awesome Information ❤

Why would you buy those products ? I avoid anything with chemicals in it and find the herbal anti-inflammatory oils like Calendula oil, Castor oil, or Vitamin-E ?

Does clobetesol cause insomnia when using it for LS? It is the third from the top steroid to cause insomnia. My insomnia has gotten worse since using it.

Show a vdeo of the action

I was diagnosed with a biopsy for LS 1.5 months ago. I’m 63 post menopausal 14 years. Diagnosed 4 months ago with low estrogen. Presenting symptoms were itching then swollen left vulva. After starting vaginal estrogen the symptoms were worse. Redness moved to perineal and swelling. Fungal and bacterial swabs always negative. No visible signs of white patches. Switched to tablet estrogen and started steroid. The redness moved to anal area. One month after treatment the redness has decreased significantly and I have flare ups every 5-7 days in anal area. Several times it was mentioned redness is not LS…so what are we maybe missing?

Hi how to heal the vulvar wound

Hi. My only symptom is labia minora sticking to labia majora and also the clitoral hooding. My doctor gave me just a local testosterone cream. Should I also do the steroid treatment?

I'm on beta blockers and blood pressure meds, and developed LS about a year after starting meds...

This information is better than any information I’ve received from a MD. They just diagnosis and hand you a RX for Clobetasol.

Pleasure video please

Really fascinating Jaclyn, thank you. For me, I had ( still have) Oral Lichen Planus and it developed in my early 40's and I am now 73. Was warned I could go on to developed Lichen Sclerosis of the vulva but, thankfully, it did not arrive until I was post menopausal and in my early 60's. Still a pain to have to deal with issues in both my mouth and vulva!

I went thru menopause and contracted Lyme in my early 50s, then LS. FLOUROQUINOLONE s are a possibility. I read that when they did tissue biopsy of Lichen Sclerosis , Burgdorferi was found.

Were you on a FLOUROQUINOLONE drug, like Leviquin?

Hello, I have recently come down with what I believe is LS. (No diagnosis yet) However, I am at the end of a 8 week treatment of Maviret for Hepatitis C. During this treatment I seem to have come down with this extremely uncomfortable medical condition. Thought I should mention this as this medicine may be a contributing factor. 🌸

I was on Letrozole after chemo and immunotherapy for breast cancer fueled by estrogen for over 5 years then developed LS. Letrozole attacks the estrogen in the body. I was post menopausal but still you need some estrogen for your bones , etc. this might be a factor in why I developed LS after 5 years of Letrozole.

Great video! I have PCOS, about two months before I developed LS symptoms I had an extremely bad ear infection followed by then getting Covid, in both instances I was given antibiotics. A month or two after getting sick I developed a yeast infection for the first time. It was treated, but came back again. For a year I dealt with the symptoms until I was finally diagnosed a year later, when I experienced a miscarriage. I think it was just a combination of the perfect storm that lead to me getting LS.

Thank you! I’m suspicious of sarcoidosis causing my LS. It’s a nuisance autoimmune disease that attacks other parts of the body. My brother and I both have it. Both of us have had our eyes affected. I have LS. He has LP. Doctors are surprised when I tell them that my brother has sarc too.

WOMEN. the word you are looking for. Not ‘people’. There are autistic women and women for whom English is not their first language who would be completely in the dark. Seems like you prioritize pandering to a tiny minority than actually being helpful.

Excellent video. Better understanding of how the body may cause LS. You are an outstanding teacher.

I have a connective Tissue disorder, Ehlers Danlos, i.e. faulty collagen. I suspect that could have been my risk factor. Plus now post menopause.

Hello there...I been in pain for over 2 years...thinking the doctor said I had sclerosis and hemroids. Yesterday I called to tell her that the meds for this is not working and the secretary told me that I do not have sclerosis and that it is lichen sclerosus. I was shocked. Now I am in severe pain and depressed. What should I do about the pain because the ointment is not working.

Anyone heard or used DMSO with there oil

What exactly do you mean "off label testosterone cream", you got it without a prescription? Where can one obtain this? thanks!

Sex toys and self pleasuring video please

Thank you for this.sure taught me a lot.i have fusing of uthreal.wont give me estrogen as I had breast cancer.i am 77 and seems like no interest.i have no stream.i pee every which way.

Oh my! Hi there, I'm so relieved to know what this is called and that I'm not the only woman who has it. I'm 69, my clitoris has been completely fused for close to 15 years. I had a terrible time during menopause. I tried different hormones and I lay the entire blame on the last hormone cream, Estrace. I don't why I continued to use that stuff but I did. It set me on fire, and I was constantly irritated down there. One day, as I was about to order a refill, I glanced at the ingredients and it contained SLS. The alarm bells went off because I cannot use toothpaste containing SLS either. It sets my my mouth and gums on fire. I stopped the Estrace and some time later, I noticed my clitoris was closing. I had no idea what to think. By that time my gyno had retired and I didn't bother to find another one. I've heard women don't really need gynocological exams after menopause. I don't necessarily believe that, but still, I've stopped getting them. I'm still married, for 36 years now, and we haven't been sexual for all these years. I should probably go for an exam after watching your very informative video, but, at my age, trying to unfuse is not something I would be interested in. My husband and I have excepted the way things are and it's not an issue in our relationship. Thank you very much for talking about this issue and anyone who read my experience. Blessings!

I was put on betnovate will it treat it can i also use in inside v

Jaclyn I just want to say thank you for what you do.

Sex toy video please.😊

What’s the difference between Clobatasol ointment and the cream?

I use an organic coconut oil as an emollient and when I need a barrier emollient my go to is Vaseline. Heading off to Argentina in the autumn and will be away some weeks and living in trousers … any recommendations for other emollients which will be lighter and easy to take for travel?

Have you tried EMUAID?? It has been a game changer for me!

Thank you SO much Jaclyn! You are my Super Heroine 😊 I love your style and candor and amazing committment to research and sharing! I was incredibly freaked out when 1st diagnosed and nowhere did I find better info than your website and now LSSN also! I've gotten into remission with my LS, knock wood, but I know where to turn for best info to try and Stay in remission. I currently use Neueve vulvar balm for my emollient. It is quite expensive though, so will need to switch eventually...Take Best Care, and Thanks again! ❤

Where did you buy the water bottle?

Oh my goodness. Im a black woman and my doctor diagnosed me with lichen sclerosus and i have been on a steroid cream

They currently have me on Clobetasol twice a day. They don't know what this is yet. I'm having to do my own research. Anyway. When I do it twice a day I get major headaches. Also, does large doses of Vit D3 help with this type of lichen?

Is LS also similar to Morphea or EHK Ichthyosis in any way?

Since ive listened to this podcast, i thought, why not try "wild yam"?! It seems to help so far!

After trial and error, I ended up using Aquaphor as the option that works for me. Appreciate your videos.

thank you so much for this video! many helpful answers!

Thank you so much Dr. Rubin and Jaclyn for sharing this important information with us. I am 59 years old and was diagnosed with LS 6 months ago and was also prescribed Clobetasol along with Estradiol ( estrace) vaginal cream and because of the health scares and labeling warnings on the box I held on using it for months. I saw my new PCP who assured me that it was safe and not systemic hormone so it wouldn't go into my blood stream . She told me I would feel better and would help with atrophy and painful sex. My Gyn doctor prescribed it to use 2x a week. And also assured me to use and that it was safe to use. You are both a God send❤

WOW! That was SO educational. I am 71 and my Lichen Sclerosus was diagnosed well over 10 years, by complete chance, by a medical student in my GP practice, (I live in Ireland). For another 10 years prior to that, neither my GP nor my Gynie ever saw any signs, so couldn't verify what my itching and tearing might have been caused by. My GP and Gynie are both very supportive, but neither have given me the treatment guidance that I have received in the last few days watching your LSSN videos and this incredibly interesting video, in particular. I am in the middle of the worst 'flare' I have ever had and am now realising that it's coinciding with the first anniversary of my best friend of 46 years isn't surprising. Extremely helpful. The importance of my vaginal oestrogen suppositories is such a relief to learn about, as I have been cautious about using them during a flare up. But after this video I feel much more informed and confident. I can not thank you both, Jacqlyn and Dr. Rubin, enough for this session and the work that you are both doing and enthused to do. It feels really exciting and liberating. Am now realy thirsty for more ...............

I'm allergic to coconut😢

Great video! Will definitely try the protocol! Also, Curious about how to utilize the steroid ointment more effectively? This was mentioned in your video but not explained. I just got diagnosed so I’d reaaaally like to know that part. Thank you!! ❤

Stress for sure..