Lichen Sclerosus Grooming Best Practices with Dr. Cynthia Wesley

[@Liz-cs5hb]

I was diagnosed a month ago and have been very confused about what kind of lifestyle I am looking at. I have felt like my womanhood has been attacked. This podcast just popped up and I am so thankful to find support and to know I am not the only one with LS. Thank you so much.

[@xxannxx87]

Same for me. My libido was super high and now it's almost gone completely. I am so afraid I am ruining things down there with everything I do. Using the cream has made the diagnosis even more clear for me vs before :( If you want to share your experience, let me know.

[@LichenSclerosusPodcast]

You are definitely not alone. I encourage you to join one of our virtual meetup. Preferably our 2-4 PM ET session since we do education there as well. You can get more info at lssupportnetwork.org/connect

[@LichenSclerosusPodcast]

You are definitely not alone. I encourage you to join one of our virtual meetup too. Preferably our 2-4 PM ET session since we do education there as well. You can get more info at lssupportnetwork.org/connect

[@nailtechmom]

OMG! I'm 69...dealing with LS..and not getting any HELP until today when I saw a Vulvar specialist and all the things in this video s what the Dr. Said.. AMAZING that I've been dealing with this for over a decade..gotten MUCH worse over time even though lots of OBGYN visits and tears and pain. TODAY is a life changer and just found this youtube channel and it is like the Angels are singing. Thank you Kathy and Dr. Cyn

[@LichenSclerosusPodcast]

Thank you! Make sure to check out our new channel @lichensclerosussupportnetwork

[@lindawilson5734]

CASTER OIL ! ❤🤠🇺🇸

[@Samambaia25]

Girl I am so grateful, still in shock , dealing with the diagnosis and my new body -since 9 months nothing feels normal down there . Cannot even touch myself anymore . Your soothing voice gives me hope 😍

[@LichenSclerosusPodcast]

Thank you. I'm glad I can help bring you closer to peace. I know how hard it can be when you first get diagnosed. Please know it can get better. You are not alone. Have you signed up for our virtual meetups? They're a great way to share your experience and learn from others. If you haven't you can do that at lssupport.net/connect. You can always email me at [e-mail] as well. 🤗

[@meredithhamilton9795]

Thank you! Thank you! Using a bidet is very helpful! I am 70 years old. I had uterine cancer and hysterectomy 18 years ago. Never had any follow up issues. 2 years ago my vulva started itching horrifically. It was not unusual for me to get up in the middle of the night to take a very hot localized shower. This helped a lot. I also use adult rash cream which also helped. Buying a $50. bidet ( from Target) and installing it myself was a game changer. It has reduced the itching considerably though it's not gone completely. It keeps my vulva clean and dry through and the day and night.

[@univerzaltruth6481]

Good idea. Thank you!❤

[@maureencourtney9678]

❤

[@MsCaliVirgo75]

Thank you for this informative podcast, @Kathy!! Your content and guests are so valuable. Very glad to see a Black Dr. knowledgeable about LS! I actually was diagnosed by a Black female dermatologist who is great but very clinical and when I asked about hygiene she really didn’t have much information to offer.

[@LichenSclerosusPodcast]

You're very welcome. I'm glad you liked it and found it helpful. Dr. Cyn is great. Be sure to check out her new book and beauty line. They're made specifically with women of color in mind.

[@veronicasherwood1168]

Soooooo helpful - thank you Kathy and Dr. Cynthia! I was just diagnosed last week.

[@LichenSclerosusPodcast]

You are so welcome!

[@nicolescott1472]

I am so glad I know now what this is. Had it since I could remember ever first seeing myself. I thought I was alone and no one diagnosed until 2 weeks ago. I am so relieved knowing I am not alone.. a bittersweet moment for us 🙏🏾 I’m 45 btw and can remember this at 15

[@LichenSclerosusPodcast]

Thanks for sharing! I know how lonely this condition is. So sorry you spent 30 years alone. You are not alone any more. We have two types of support groups. The first is a free virtual meetup. I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on June 11th. You can signup at lssupport.net/connect. Many women find it helpful to connect face to face with women who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. Our other support group is our private membership, LS Warriors. It's a safe, intimate, positive space where we learn about our condition from and with each other. There are no distractions because it's off of social media. We work on healing the mental effects as well as the physical. There are over a hundred hours of education in our video library, varying from expert interviews and Q&A to Welcome Parties, where we're playing games and learning more about each other. We offer additional classes such as Wild Soul Movement, a gentle guided way to get back in touch with your body. And will be introducing art therapy soon. We're just started working through the book Atlas of the Heart by Brene Brown to explore our emotions and how to work through them. This week is stressed and overwhelm. We meet once a week to discuss and be there for each other. It's a sisterhood. We truly want the best for each other. You can find out more at lssupport.net/joinwarriors I hope to meet you in one of our groups soon.

[@lourdes4341]

Thank you 😊 both Kathy and Dr. Cyn for sharing this valuable information. ❤

[@paulawisdom6020]

I really appreciated this well - presented information . I love your personality, Dr. Cyn. So smart, but you make it so easy to learn from you.

[@teamjesus2407]

I don’t have LS but i bought a bidet several years ago and I’ve tried to tell all my friends to get one. They’re wonderful.

[@LichenSclerosusPodcast]

Yes, they are!

[@paulettepoirier7134]

I am so glad to have found you Kathy😊 I was just recently diagnosed with LS and am going through my little private hell these past few weeks... its like sitting on a pillow of razor blades...I want to share my story to you and anyone who has just been recently diagnosed like I was just recently diagnosed with this deliberating disease. I went late getting this checked from embarrassment and also thought it would just clear up and go away... So started to feel the itchiness and the burning a few times back in the spring...but then all hell broke through 3 weeks ago so I took a mirror and looked at what was happening down there I couldn't believe my eyes!! My whole vagina was white and wrinkled up😳 So I rushed to the walk in clinic thinking it was a yeast infection...never in my life i have i ever had a yeast infection...but heard about them from my friends the thing was I had no discharge...so I started to think how did i get thid...and then I thought ok maybe it was the new Hot Tub i got in the Spring. ( maybe we can check that as a possibility ?) So the Walk in Clinic the Dr that was on call took a look see and took a swab and right away by the appearance of it he diagnosed me right there on the spot like it was a thing woman just go through and that Menapause is a factor but i am not menopausal i am done because i am 66 yrs old... The first thing that freaked me out was when he used the word Sclerosus... After i caught my breath and he calmed my nerves down... the Dr. did say it is rare but it is happening alot to woman these past few years so he went on to say that for me to see a Gynecologist right away and get a Biopsy Swab done to rule out any Cancerous Melanoma because of the skin around the Vagina the Vulva could be Cancerous and then Cancer of the Vulva...ok now I am really freaking out... He did prescribe me a Steroid cream called Taro-Clobetasol but to use it only twice a day... Now i guess this is my life because there is no cure no reason on how a person can get Lichen Sclerosus. I went to Google of course to do some research and found you Kathy. So finding you was a God send...😇 Thank you very much and also Thank you for todays guest Dr. Cynthia Wesley she really gave me alot of tips to help me especially the tip on Moisturizing the Vagina ( now i have my face and my Vagina to Moisturize daily lol ) I ordered a Peri water bottle and now i am looking into getting a hand held spray attachement for my toilet ( The Bum Sprayer) of course warm water would feel so much better I think than using toilet paper. So once again Kathy for being there and sharing and thank you for letting me share my story.

[@TheFarkhondeh]

After I wash myself with cooler water, I pad dry myself with a very nice thick washcloth. (I have bought over 40 washcloth put them all in the basket in my bathroom)have been staying away from sugar, dairy, wheat ,vinegar .I also been drinking eight glass of water every single day the smell is gone. I feel 99% better. Also I have to stop washing myself with soap I don’t do that anymore just water.

[@LichenSclerosusPodcast]

Thank you for sharing your story. I'm glad the interview was helpful for you. I encourage you to also watch the interview with Dr. Jill Krapf on the proper steroid therapy. It has been life changing for many people, including me. kzbin.info/www/bejne/fJXadnaud698eKs&lc=UgwFaFXCxlesbyo_K_t4AaABAg Let me know if you have any other questions.

[@LichenSclerosusPodcast]

Thank you for sharing what's worked for you! Just to be clear as well, LS does not cause a smell. We can have secondary issues that may change our normal odor, such as bacterial vaginitis.

[@Amber4]

Menopausal means that you are not menstruating any longer. So the doctor was right.

[@emilia1470]

Thank you for this video. Its lifesaver. Was just diagnosed LS 05/09/23. I am helpless but looking more information about the disease. Its a life changing. Have to give up tight fitting pants/ panty/shorts😢 and so onnnnn. Glad i found you, Kathy!

[@marlene56-143]

I didn't know what a bidet was until I was a young adult. My 3 year old granddaughter uses one. Times have changed.

[@janiboma]

Thank you so much for this video. It is so helpful. I’m going to watch it again. Dr. Cyn is amazing. Thank you, again.

[@LichenSclerosusPodcast]

You’re so welcome!

[@sylviahorrox3626]

I am 86 and was diagnosed eight months ago but I also suffer from sjorgrens so my autoimmune system is all over the place but the itching drives me mad and makes me feel depressed. I have all the creams and ointments you speak about but I also think if I eat spicy foods it seems to be worse , could this be.. I am having regular check ups at the hospital , but was doesn’t help is that I am incontinent and have to use pads . Oh my what a life.

[@LichenSclerosusPodcast]

Sorry you are suffering so badly, Sylvia. I aso have Sjorgens. It’s no fun. Itching was my worst symptom as well. I have been itch free for a year now. I attribute it to using my steroid properly. I encorage you to watch the episode I did with Dr. Jill Krapf. We discuss proper steroid use and the science behind it. Also have you tried pelvic floor physical therapy? It coud help with the incontinence. I did an interview with PFPT Ashley Stump that can shed some light on how PFPT and LS work together. Lastly, have you looked into cotton pads or pade made from natural products? I hope these resources help.

[@sylviahorrox3626]

@@LichenSclerosusPodcast thank you for answering so prompt I will watch and do whatever I can as I have just had two rotten days. It is good to know how many people have this dibilitating problem

[@rosemarysthyme6087]

What about organic castor oil or argan oil?

[@LichenSclerosusPodcast]

Castor oil is a great one. I've not heard of using argan oil.

[@barbarawoolley781]

How about Epsom salts in bath

[@susanarthur9175]

Oh my goodness. I wouldn’t dare sit in Epsom salt baths. That would set me on fire. Plain water for me.

[@LichenSclerosusPodcast]

Some people like a little something in their water but it's not necessary. Use caution and test whenever possible.

[@laurieeyebee]

I don't have to worry about grooming, I have basically nothing down there (or on my legs or under my arms!) I am 67, post hysterectomy at 46 and had a horrific bout of itching about 15 years ago. When I got a mirror and looked I saw a patch of pearly white skin. Got in to see my GYN and she wasn't sure what it was but she removed it. Turns out it was VIN (forgot what stage) and she also diagnosed me with LS as the itching did not stop after she removed the VIN and she saw small blood blisters and a wasp-shaped area of very pale skin. My biopsy came back negative. She put me on Synalar ointment Tried switching around laundry soaps and shower gels but nothing really helped. I have tried to learn to live wih it. I am not sexually active now as my fiance died last Christmas but I had to use lubricant when I was. Being very incontinent doesn't help, I have to wear pull-ups and can't go without them (i would love to just air it out but nope).

[@catamia123]

“Private Face”. Very cool and nice term …thank you.

[@LichenSclerosusPodcast]

I know right! I love it! You're very welcome.

[@chrishood5033]

Am a swimmer. My dr has me using Aquaphor as my moisturizer so when I swim I slather it on

[@TheFairytrisha]

i was diagnosed nearly 30 years ago after a biopsy of the vulva. i tried all different creams non of them worked untill my specialist nurse gave some hydromol ointment it is the only thing i can use. i don't wear underware at all.i shower with the ointment, i cannot go swiming as i go into a flareup .

[@lizburton966]

I was just diagnosed with this a few months ago, the cream is working but i wish there was more of a support group. My woman hood feels hindered, the itching and being uncomfortable has really hurt my confidence

[@LichenSclerosusPodcast]

We have two types of support groups. The first is a free virtual meetup. We host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on October 14. You can signup at lssupportnetwork.org/connect. Many people find it helpful to connect face-to-face with people who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. Our other support group is our private membership, LSSN Membership. It's a safe, intimate, positive space where we learn about our condition from and with each other. There are no distractions because it's off of social media. We work on healing the mental effects as well as the physical. There are over a hundred hours of education in our video library, varying from expert interviews and Q&A to Welcome Parties, where we're playing games and learning more about each other. It's a family. We truly want the best for each other. You can get access and learn more at lssupportnetwork.org/membership

[@LivingNLearning-cz1gg]

Facebook has some wonderful LS groups

[@pamelaholland9021]

Thank you for sharing such great information

[@LichenSclerosusPodcast]

You're welcome!

[@monikaduff8383]

I was diagnosed 20 odd years ago. Am half way through this video loving it. But one thing I have found since self examining that after patting and using toilet paper, specially after using ointment at night Bits of Paper Remain attached. This has caused lots of flares over the years. I now use non perfumed baby wipes or part there of on the outside of the paper and do not flush these but dispose of in bin.

[@LichenSclerosusPodcast]

We have a couple of ladies who come to the virtual meetups who use silk squares to pat dry. They cut them from a larger material and have them stacked by the toilet and then they wash them and reuse them instead of toilet paper. Might be something to try.

[@ninijohn8211]

@ please use cotton cloth to pat dry and then wash them to and reuse them

[@lmarlin]

It seems like with the moisturizers and ointments, you might get staining of your clothing. Is it advisable or not to wear pantiliners? I'm post menopausal so I'm not using any other types of pads for periods.

[@micheladonofrio2285]

Can anyone tell me if "once a week" for clobetasol when in remission means one time or 1 day (2 times morning and night)?

[@ChristineKrannich]

My dermatologist told me twice on my designated day when I saw her 2wks ago :)

[@LichenSclerosusPodcast]

Typically once a day. Check out this blog for more details. lssupportnetwork.org/drjill

[@lawyergrits]

I was diagnosed with LS only 9 days ago so I am one distressed newbie! I'm finding the info on your podcast very helpful. I read through the full show notes but having trouble understanding when/how far apart in time to moisturize versus treat with the steroid ointment. My GYN prescribed Triamcinolone twice a day but not much else in the way of instructions.

[@LichenSclerosusPodcast]

You should wait at least 15-20 minutes after applying your steroid to apply a moisturizer or barrier cream. I encourage you to listen to the interview I did with Dr. Jill Krapf on proper steroid therapy. kzbin.info/www/bejne/fJXadnaud698eKs I will caution that Triamcinolone is a mid-potency steroid that will need to be applied more often than ultra-potency steroids. Your doctor should give you a taper-down schedule.

[@juliemcdonald1245]

OMG, I was just dx today. Hugs from Montana

[@moyajosephcraven5156]

I'm also active running, which is my passion is getting unbearable because of the itch during my run.

[@safaa9654]

Please put time stamps, even if they are very wide/general

[@LichenSclerosusPodcast]

Our new videos on our new channel @lichensclerosussupportnetwork has time stamps. Thank you for the feedback.

[@nccrchurchunusual]

Thx for sharing.

[@LichenSclerosusPodcast]

Thanks for watching!

[@sandragallippi1536]

I have a horse and I ride regularly. I was diagnosed LS. What are the recomandations for riders? Thanks

[@LichenSclerosusPodcast]

Hey Sandra. This is a great question. While I haven't spoken to anyone specifically about horses I would imagine it's similar to biking. Don't ride while in a flare. Get a comfortable cushion seat. Use plenty of moisturizer and barrier cream. Try not to wear tight clothing that will irritate you for too long. I'll see if I can find an expert to get more specific tips.

[@sandragallippi1536]

@@LichenSclerosusPodcast thank you so much

[@serenalite]

I am so grateful for your channel! I discovered and like Booda butter brand moisterizer!

[@LichenSclerosusPodcast]

Wonderful! We're glad you found us too. Be sure to subscribe to @lichensclerosussupportnetwork for new content.

[@valcollins-fd4up]

So Grateful ThankYou ! I'm 69 years Young! 8.5 years with this weird Auto immune underactive Thyroidl inked Dis-ease. Found Aloe Vera to wash Lady parts it cools the area & relief is SO quick. Dry with care ! Then I apply a little OLIVE OIL. Use after a wee too, as the sting sometimes during a flare up hurts. Hope this helps too!

[@LichenSclerosusPodcast]

Hey Val! I'm so glad you found the information helpful and that you've found what works for you. I want to point out that we haven't found a link between LS and underactive thyroid, although 14% of people with LS also have other thyroid-related autoimmune conditions. AIs tend to come in packs. There are other AIs that people also have, such as vitiligo, alopecia areata, and psoriasis. We discuss this on our LS Overview page at lssupportnetwork.org/lichen-sclerosus-overview/ Hope you continue to do well. 🥰🤗

[@safaa9654]

For me i get irritation from shaving but if i leave the hair on i find it hard to apply my medication :/ Im scared im making it worse each time i shave

[@LichenSclerosusPodcast]

I have the same experience so I just trim it down every month with scissors when I get ready to do my vulva check. This way the hair is short but doesn’t irritate me.

[@bsutter6097]

This was such a help. I have a sitz bath but a peri bottle will be so much more discrete. Also never thought to moisturize down there. Thanks for the tips.

[@LichenSclerosusPodcast]

You are so welcome! I hope they help you feel better. 🥰🤗

[@brendasnow8255]

What kind of moisturizer?

[@LichenSclerosusPodcast]

There are many different kinds. Check out this article on our website. Barrier Cream Or Emollient: Which Is Better For Lichen Sclerosus - lssupportnetwork.org/barrier-cream-or-emollient-which-is-better-for-lichen-sclerosus/

[@marysiadzierzek6482]

What is a "Perry bottle" ??

[@LichenSclerosusPodcast]

A squeeze bottle you can use to pour water on your vulva.

[@michelleaw1325]

I had been looking for a razor with a single blade and can't locate a brand. Are they even out there?

[@LichenSclerosusPodcast]

I Googled single blade razor for women and got 8 choices of the top. They are more expensive then the store disposables but they are out there. Good luck!

[@nancifrancis2296]

Thank you, Kathy! This is the one that I wanted to see! ❤️

[@LichenSclerosusPodcast]

Great!

[@maryanneproulx908]

I have LS and when washing in the shower I use my hand and Dove soap less friction and a mild soap has helped me my LS is in a quiet mode for now

[@offthebrand]

Great episode!

[@LichenSclerosusPodcast]

Thank you!

[@justinesimone5343]

A lady from the UK said she uses 1 Tblspn Coconut Oil with a few drops TeaTree oil as a emollient. She said it helped clear up her rash.

[@LichenSclerosusPodcast]

Thank you for sharing. Unfortunately, LS isn't a rash. Putting tea tree oil on open wounds like fissures or tears can be extremely painful, and we do not recommend it. Coconut oil on its own is one of the favorite emollients.

[@cameragirl242]

Just went back to shaving about 2 wks ago; hair was irritating, plus wanted to get the steroid ointment onto the skin better. Phillips makes a battery operated personal trimmer, it gets a reasonable close shave, without scraping the skin. Used to shave for over a decade, but stopped about 4 yrs back, but this probably kept any structural changes from being seen sooner, and kept the LS hidden from me. Was diagnosed 3 mos ago, after tearing & orgasms being so difficult to have.

[@rubysohogirl]

I can relate. I have always shaved down south, and have to keep is trimmed down there or the medication doesn't stay put. Every time I make love to my husband (weekly) I just want to cry since I can't seem to get stimulated by the clitoris anymore, and the burning after sex makes me cry for days. I am so incredibly sick of this. We can find cures for other things or medications to put this into remission but we can't find a proper treatment aside from topicals? I don't think there is enough clinical trials, or research being done for this. I feel like there are so many woman out there that are suffering in silence. The word needs to get out about this.

[@LichenSclerosusPodcast]

Thank you for sharing! I have a personal trimmer as well. I've been pretty successful trimming the hair with just scissors. It's not bald but close enough that I can see everything when I do my vulva checks. How's you're LS now?

[@LichenSclerosusPodcast]

So sorry you're suffering. There's some promising research being done. Unfortunately it takes a LONG time. Have you joined our virtual meetups? You may get some tips that will help you feel better. I've been in remission now for eight months. We have members that are two years in remission. It's possible but can take trial and error. The meeting is on the 15th. You can find out more at lssupport.net/connect Hope to meet you soon! 🥰🤗

[@rubysohogirl]

@@LichenSclerosusPodcast I am having a minor flareup but I am using massive amounts of oral supplements (Afraid of topical oils or creams due to the possibility of getting it in the urethra and causing massive damage to the urethra and a UTI since I get them if the wind blows just right). I will be looking at changing my diet, and I am trying to keep my stress levels down.

[@moyajosephcraven5156]

I've learned so much in this one video. I've been shaving and omg! Now i know why I'm constantly itching! Didn't know about moisturizing! Those anti itch over the counter don't work for me.

[@LichenSclerosusPodcast]

Glad it was helpful! I also itch like crazy after I shave. Nowadays, I just trim my hair down. Have you watched my interview with Dr. Jill Krapf on how to apply your steroid correctly? kzbin.info/www/bejne/fJXadnaud698eKs It can also help with itching. In the meantime, I also did a video on how to relieve the itching symptoms. There are a lot of tips in the comments too. kzbin.info/www/bejne/rIHJhqakjtp1aK8

[@moyajosephcraven5156]

@LichenSclerosusPodcast the cream i have is not helping with the itch. More than anything, i believe it's the constant friction that i just learned. The patiliner, the maxipad. I might have to do tampons, I've never used tampons ever in my life.

[@friedaticer3156]

For pain,my Dr. Prescribed a cream,lidocaine ,which deadens the skin . It works really well!

[@LichenSclerosusPodcast]

That's awesome! I have other videos that talk about pain and itching. This one was on grooming. I'm glad you found something that worked. Have they tried to find the source of the pain?

[@ruthbarraza5536]

Recently diagnosed and the topic of grooming (maybe foolishly, maybe not) was one of my first questions or concerns. I so enjoyed being hair free but my waxing routine was abruptly halted with the diagnosis. Thanks for getting this knowledgeable OBGYN to speak on this, however frivolous or vain it is. It helps to feel sexy and still like a woman. I look forward to more videos with qualified and knowledgeable people that can make our lives not only more manageable but also gives us hope and some peace. Thanks again

[@LichenSclerosusPodcast]

You're very welcome. Our beauty routines, no matter what they are, help define our sense of self. Nothing frivolous about it. 🥰🤗

[@angelicabrown6221]

Have you noticed stress causing flare-ups 41:00

[@LichenSclerosusPodcast]

Absolutely! Check out this resource. lssupportnetwork.org/does-stress-cause-vulvar-lichen-sclerosus/

[@salty7056]

How about if we are using pads due to heavy incontinence?

[@LichenSclerosusPodcast]

Hey! Sorry you're dealing with this issue. In this case I would recommend a good barrier cream such as Vaseline or Aquaphor. You want something that will protect the skin. Hope this helps. 🥰🤗

[@suecunningham5679]

I’m 10yrs post menopausal and 20 years with LS. I did not know that urine is inflammatory for LS! I now have complete clitoral fusing and some pain. What frustrates me is that I was not told this and have reported urinary symptoms for years but was not warned about (gynaecology) about pads and urine affecting LS. I’d like to hear more about LS and the menopause. I’m now using vagifem for urinary symptoms as they were driving me mad on top of LS. And I have got a referral to see a pelvic PT. We need a more joined up approach to treating LS here in the UK.

[@ZZ-yw5sh]

I just have a water bottle near the toilet and put it on my toilet paper for wiping. So moisturizer is good down there? As soon as it gets humid down there l start to itch and get irritated. But l will get your product and see if it will help. Thank you for all your advice! LS is so debilitating!

[@lorrainebody2595]

What sort of moisturizer

[@chrishood5033]

My dr has me using Aquaphor

[@juliemcdonald1245]

I got so lucky, I guess because I was diagnosed today by a nurse practitioner who had never seen me before. Unfortunately, my labia are so deteriorated on one side I am deformed. I had the nurse take a photo of my hoohoo with my cell phone just so I could see what the hell they were talking about. My poor vag. OMG, I already have IIH, another very rare disease. I'm just overwhelmed right now. Like seriously, if soul contracts are true, I signed up for one helluva growth process this incarnation. I want out of this contract pronto.

[@LichenSclerosusPodcast]

So sorry you have this condition but I'm glad you got a diagnosis. I know it can be hard to take it all in right now but please know it can get better. You are still beautiful and your labia are not deformed, just different. Take some time for yourself and feel your feelings. When you are ready we have two types of support groups. The first is a free virtual meetup. I host them every other Saturday from 2-4 and 7-9 PM EST. The next one is on June 11th. You can signup at lssupport.net/connect. Many women find it helpful to connect face to face with women who understand what they're going through. It's no pressure. You control your interaction. You can just listen if you want to. You don't even have to turn on your camera. Our other support group is our private membership, LS Warriors. It's a safe, intimate, positive space where we learn about our condition from and with each other. There are no distractions because it's off of social media. We work on healing the mental effects as well as the physical. There are over a hundred hours of education in our video library, varying from expert interviews and Q&A to Welcome Parties, where we're playing games and learning more about each other. We offer additional classes such as Wild Soul Movement, a gentle guided way to get back in touch with your body. And will be introducing art therapy soon. We're just started working through the book Atlas of the Heart by Brene Brown to explore our emotions and how to work through them. This week is stressed and overwhelm. We meet once a week to discuss and be there for each other. It's a sisterhood. We truly want the best for each other. You can find out more at lssupport.net/joinwarriors Just know there is hope and many manage this condition and live normally. You can always email me at [e-mail]. 🥰🤗

[@juliemcdonald1245]

@@LichenSclerosusPodcast Thanks so very much. The support is greatly appreciated i'll def be around.

[@rubysohogirl]

@@juliemcdonald1245 I feel your pain. I don't want to see a picture of what I look like down there. I can clearly feel it, and I am so devastated. I feel very overwhelmed. I have tried the potent steroids down there and it is "eating" my skin. Let's not even talk about what I now smell like down there. I never had a musky or horrid smell down there, and now I do. Not to mention hearing that this disease causing the vaginal opening to "close" as well as possibly the urethra. I mean if the intense itching, burning and pain are not enough to know there is an increased risk of cancer and malformation of my vagina. Makes me want to cry daily. All I keep hearing is "You are not alone" or "don't give up" but it's hard to see the light of this disorder.

[@juliemcdonald1245]

@@rubysohogirl I hear ya. I found a recipe for suppleness down there from another person with this horrible struggle. Get an 8 oz bottle of hexane free organic castor oil and doTERRA lavender and lemongrass oils add 8 drops lavender and 4 drops lemongrass to the bottle and then fill a smaller applicator bottle from it. I use this and it is a godsend. I put mine into one of those small Purell purse sized pumper bottles that I thoroughly rinsed out; it is perfect for the consistency of the castor oil. Sending healing light to you and wishing you some relief.

[@jandkcon]

I heard something yesterday, I believe from Dr Jenn-on this channel, that women who overuse their steroids- such as multiple applications a day- can actually damage their vulvar skin. Maybe you have or are overdoing?☹️

[@VanessaWiggins-e2p]

I just found your podcast and this is REALLY beneficial for me. I was using non scented baby wipes but this isn't helping at all

[@LichenSclerosusPodcast]

I'm so glad!

[@crystalknight8968]

Qhy do you not respond to all the questions LS directed?

[@LichenSclerosusPodcast]

Sorry. I'm one person manning multiple channels and programs. I try to get to everything but sometimes things fall behind. You should see my emails. 😉

[@ruthharris1093]

Hi . Do all Dermatologist know about LS , or know how to test for it ? Thank you ! Ruth

[@Ronnih]

The trouble with laser is you have to shave first. Plus it doesn’t work on light or red hair. 😢 Maybe the personal trimmer/shaver someone suggest is better as it doesn’t get as close to the skin. Thank you DR Cyn fit the valuable information in this video! Being new to this LS thing, I am grateful! I know this video is a over a year old, but I couldn’t seem to find a depilatory cream that I thought you mentioned on you website. Do you still sell it?

[@LichenSclerosusPodcast]

I'm glad the video was helpful. I went on her website and couldn't find it either. It may still be in development.

[@brookewatson9923]

Is there a lubricant that is recommended for intercourse that is natural but effective?

[@LichenSclerosusPodcast]

We have a video on lube at kzbin.infodx-zenI31VA.

[@lovesakitas]

Is the topical hair remover called “Iniqua”? Thank you

[@debrafrederick5300]

What is a mild exfoliator? Do you have a suggestion? Where do I use it exactly?

[@chellebelle1970]

i ws diagnosed w LS yesterday.my outer labia r red & itchy-my inner labia is pale n shiny-do i put the steroid crm on jus the red itchy outer lips or inner labia also???

[@LichenSclerosusPodcast]

Hey Chelle! I answered your question in your other comment but I can copy and paste it here as well. You don't need to put it on the hair-bearing part unless you have symptoms there. I get itching on my mons pubis, so I apply there. I do, however, apply on all the fleshy parts, labia minora, inside the labia minora, the clitoris, the clitoral hood, and the perineum. Ideally, you would have a great doctor that will tell you where to apply, but if you're on your own, you need to go with what feels right for you. Definitely apply where ever you have symptoms. I also recommend the labia minora, clitoral hood, and perineum as a preventative because these are LS's favorite places for anatomy changes. If you ever feel a burning sensation after applying the steroid, skip that area. That's probably your body's way of saying you don't need medication there. I hope this helps clear it up. I would also encourage you to see a medical provider for a possible secondary condition. According to Dr. Krapf LS shows up as white, not red. Unless it's red from scratching, this can indicate something else is going on. You could have a vulvar yeast infection that's causing the redness and itching. This can be diagnosed by a swab of the vulva.

[@pkirkey6932]

I’m 70+ and have had fairly well controlled LS for about 15 - 20 years. I have found that Knix brand period panties have been the softest and most comfortable solution for dealing with sweat down there and the occasional sneeze induced leak. I know they are not cotton and they are expensive compared to other styles and fabrics but my itch is worse with plain cotton. I have not tried bamboo fabric undies but would definitely consider them if I find a style I like.

[@LichenSclerosusPodcast]

Thank you for sharing!

[@lovesakitas]

I had a complete loss of nearly all pubic hair about three years ago. Then I started getting waxed until by the third time, my skin screamed “No”! But now about 3 years later the pubic hair has all grown back. What happened? Did the waxing cause exfoliation and that is what allowed the hair to grow back? If so, wonder if some type of exfoliation would help my brows to grow back? What about my scalp? Do I need to be exfoliating it so the hair will thicken up again? Thank you for giving us so much help🩷

[@beverlykirby6419]

Remission???

[@LichenSclerosusPodcast]

Check out this video kzbin.info/www/bejne/apizeoGbZ8lso8U

[@jandkcon]

For the past two years I’ve been pretty much unable to ride my bike-I have taken spin classes for years and loved cycling, averaging 20-35 miles each ride. The last few times I’ve ridden I was in misery after about 5 miles, and felt it was post menopausal’lady parts’-would stop and apply Vaseline, and wore no extra layers other than cycling shorts. Finally have been diagnosed with LS, not ever knowing it’s a thing! My Gynecologist has me now on maintenance steroid cream, white cotton underwear and no panty liners. Not easy at 73, but doing my best to comply. Cannot find very light absorbency Tena pads, and my labia majora still are very sensitive where they connect at the top. My dr did not address moisturizer, any further tips on panty liners specifically?

[@LichenSclerosusPodcast]

I'm so sorry to hear this. I hope you're able to bike again soon. We have an article on period product s which may be helpful. Lichen Sclerosus And Period Products - lssupportnetwork.org/lichen-sclerosus-and-period-products/ We've discussed biking inside the LSSN Membership. The biggest tip is getting the right seat. Here are a couple of articles. In the group, members gave specific suggestions. exploringwild.com/bicycle-saddle-pain-women/ pelvicpainrehab.com/pelvic-pain/6787/as-the-bicycle-turns-cycling-and-the-pelvic-floor/ They also suggest a silicon panty insert to protect the vulva. Good luck!

[@MS-gy9su]

Can we use a fragrance-free sensitive skin natural deodorant to moisturize?

[@LichenSclerosusPodcast]

I don’t know about using a deodorant down there. Generally moisturizers are oils or lotions. They need to be absorbed into the skin.

[@morganprudent1422]

This was so informative, thank you!

[@LichenSclerosusPodcast]

You're so welcome!

[@AbinayaThiyagarajan777]

What does chronic progression mean? That one day i will die because of it?

[@LichenSclerosusPodcast]

Hey. LS is considered a chronic progressive condition because there is no cure and if left untreated it can get worse. While you can not die from LS, there is a very small chance you can develop vulvar cancer and if that is left untreated or not caught in time it can kill you. The chances are very small. If you're taking care of yourself they're almost nonexistent.

[@vickigollop1216]

Ha!! Not funny, but I was like what exactly does progressive mean? Will I no longer have an asshole one day?

[@therealpixie]

Silk! I bought a couple of yards of silk and tore it in to 6” squares. I was amazed how absorbent it is. Just hold it on your skin and it soaks up every drop of water. I keep a basket w/my squares on the counter beside the toilet and a net bag inside the counter. When full, just wash and repeat.

[@crystalknight8968]

My bidet makes it worst. Epsom salt soaka

[@poppadoc5614]

People of all colors have this issue. I wish your products were for all of us. First thing I did was go to shop and said I guess it's not for me.

[@LichenSclerosusPodcast]

Very true and there are many companies that make products for the "average" person with a vulva, meaning fair skinned people. People with darker skin sometimes need different products that they can't find because they are not made for them. Dr. Cyn is helping to fill that gap. If you felt the product is not for you, that is understandable. Now you understand how darker skinned people feel most of the time.

[@crystalknight8968]

I ve not itched ever; but peeling akin, pain, raw, embarrassing bc it charges everyday life, the way you can dress,etc and expensive even with insurance!

[@hiroda459]

Thank you

[@LichenSclerosusPodcast]

You're welcome! 🥰🤗

[@janiboma]

What about the portable bidets? They’re the bottles that you fill up with warm that has a top that is long and you squeeze and spray the area. Is that ok to use.

[@LichenSclerosusPodcast]

Yes! They’re very similar to peribottles. Dr. Cyn is also speaking at the Holistic Healing Summit. hoistichealingsummit.live

[@JL-qd7mc]

I have lichen sclerosis for 10 years .when it flares I used clobetasol ointment for 7 days then I use emuiad max cream for maintenance you can order it amazon. It helps me.

[@LichenSclerosusPodcast]

How often do you flare? The most important thing is to keep the infammation down. It’s great if the emuaid helps you do that. I’m glad you’ve found what works for you!

[@marissa6492]

My derm has me using Cetaphil gentle face wash for my girl area to help remove ointments from the skin down there and I have had no issues using that

[@babsgrigg3552]

Don’t know what a “peri bottle “ is. I use moisturizer. Give information in anal area, not in vaginal area!! 10:54

[@yayadjb]

I’m fused together down there 😢

[@iamsewsketchy9402]

Emu oil is great.

[@WonkyWomanLife]

Finally after 6 year,found surgeon to undo my fusion. Nobody wanted to

[@LichenSclerosusPodcast]

Congrats! You also don't want just anyone poking around down there. 😉

[@juneelee-johnson3718]

Docter Cynthia. Why do you not give us some feedback on what may help our system. To me what your talking about is so logical. I would respect you more on positive feedback on what may help the discomfort.

[@LichenSclerosusPodcast]

This is Kathy. Dr. Wesley was my guest and was asked to discuss grooming, which is her expertise. She came and did as she was invited to do. This information was and will be helpful to many who have questions about it. There are other videos discussing treatments and ways to help your discomfort. I encourage you to keep watching.

[@soniahazy4880]

🛸🌟🪷🧩🙏🌈🎼💎🤩🦋

[@llewis5410]

Thank you for that info because dr dosen’t help with LS

[@LichenSclerosusPodcast]

You are so welcome!

[@katrinaboehm8889]

EMUAID!!!

[@smoothjazz1954]

Thank you

[@LichenSclerosusPodcast]

You're welcome