Recently diagnosed with Lichen sclerosus. Feeling nervous about future treatments.

Thank you so much Karen. It's so helpful to read about how other women cope with the news. I will read as much as I can and try to stay calm. Thanks again. Caroline

Hi all..... I was diagnosed 5 days ago and still in shock. Great information on here. I am using, twice daily, a steroid cream for a month, which then goes down to once a day for a month and then nothing....... I am definitely up for trying other things to help but unsure whether I can use things like coconut oil etc whilst using the steroid cream?  Some input would be wonderful ......

Hi Charlotte! I too am newly diagnosed ( 26 days) and hv found this forum to be wonderful to share information  and get support. Remember you are not alone, we are all here to listen and support you! I hv not been to see my Dr since my diagnosis since I left on vacation that day. I will see her again July 24. Since I do not hv access to steroid treatment yet, I have been self- treating with Emuaid, Emuaid Maxx, a moisture barrier ointment with Vit A, D and E and all my symptoms are gone and healed- up.  I hv changed my diet and upped my vitamin supplements, and will follow- up with my Dr. When I get home. We hv learned that stress, wheat and sugar make things worse, so keep an eye on those- good luck! 

Hi Karen and all. I have been diagnosed with this and dealing with it for over a year. Nothing really works. I’ve been on the clobetesol almost the entire time.  I’ve tried all the essential oil combinations and they do not work. I’ve resorted to PRP and will see in time if that helps. So far but I’ll give it Time. It’s no fun but I am desperate. The itching is horrible. The ulcers are numerous. I work and it’s hard to concentrate. Does the Emuaid really work well?  I sent away for it thru Amazon and after 5 weeks and tracking say I received and I didn’t, they canceled my order and returned my money!!!  I ordered Perrins but right now after the PRP that doc said don’t use anything for now except Aquaphor and a specific regimen of Estriol.  I can’t believe there is no cure and I will be this miserable forever 

Dear Lostgem, please do not give up hope. I’m so sorry your order was lost. You can order it directly from Emuaid and they will send it in 24- hrs! I used Amazon to save on shipping with my Prime Membership. Emuaid and Emuaid Max were a godsend for me! The aperrins was okay, but the smell was not great. The antioxidants , esp. Vit C in cream complete can feel burning at first.  I wish my gyn had taken before pics to compare when I was in a flare and she did the 6 biopsies- it was horrible! Clit was twice its size, unner labia covered in ulcerated areas, pain was atrocious! After 8 days with Emuaid pain was gone, itching was gone, day 14 all ulcers healed. I saw Dr. This past Friday 7/20 for the 1 st time since diagnosis 6/11, and he said all looked good, under control, continue what I am doing if I feel a little tingle, prescribed clob but NOT to use it unless in a flare again. I will continue my diet ( low oxalate, little sugar, low carb), continue with my supplements ( thx Nancy KB) , wear cotton panties, wear skirts and dresses, use organic cotton tampons and pantyliners, bath with baking soda when needed, and try to get back to my life.  I have some atrophy to keep an eye on, but after 6 weeks of letting this run me, I am now running it! 

There are so many great suggestions on here to try, I wish you good luck and know we are all here for you! ❤️

Hi, I am wondering whether you have seen a Specialist at all in the last year?  Clobetasol should be doing you some good at least - unless you are (were) not applying it frequently enough, or, not working it into the skin to get a dermatological benefit.

While I am a male with LS - you need to see A Vulval Conditions Specialist, or a Gynecologist who is very familiar with LS.  I would say if you have ulcers that are not under control, you need to have this attended to urgently by a Specialist - if you are in the UK, you may have to travel to another NHS region to find such a Specialist.  Please don't be put-off by a Doctor (your GP I presume) who may tell you there is no such specialist in your area - through the stipulations of "NHS Choices" everyone has the right to see a Specialist in a particular region of the country.  In the USA, Vulval Conditions Specialist are more commonly available, perhaps?

I tried to get into a vulvular Specialist here in the USA and there was a 4-5 month wait! I treated myself homeopathically with Emuaid, Emuaid Maxx, Perrins, Moisture Barrier with Vit A, E, D, rinsed with baking soda and changed my diet. No steroids, no drugs. 6 weeks have passed and all pain and itch are  gone, all ulcers are healed and color returning to normal. I wasn’t going to wait for an “ expert” to help me, I had to help myself! All the wonderful people on this site gave me advice on diet, supplements, cleansing, moisturizing, relieving stress and I researched the heck out of everything I could find online. 

Don’t give up, don’t stop learning and never stop fighting for yourself and everyone else who suffers! 

Thanks for the reply Karen and for the details of what worked for you.  As a male who suspects the beginnings of my LS date back to my middle teen-years, and being 61YOA now, uncircumcised, and, only ever used Clobetasol to control my symptoms and keep my skin as healthy as possible for 7+ years now, I have not required to try all the suggestions you wonderful Ladies report on here.

We men with LS get-off very lightly compared to the majority of Women suffering with the differing Lichen Conditions.  As I say, other than the Clobetasol, the only things I have needed to do is to keep any chemicals, particularly oil-based ointments, skin creams etc away from the affected area of my penis, wash undies and towels with liquid soap flakes and maintain a pristine penile hygiene regime in which I wash with water only, then ensure I am 100% dry afterwards.

Thanks for the encouragement too, I will keep doing my bit to combat this awful condition, and pass-on the recommendations you inspirational Ladies suggest on this Web Site

I just saw a GYN who I’ve been waiting to see for over a month. It was a waste of time. Her nurse basically wanted to why I was there ... couldn’t my PC treat me. The GYN has no help for me since I’m not benefiting from the clobetasol. She said I should be using it every single day for the rest of my life. She did give me a referral to a specialist at the U of Washington. I’m not hopeful. There should be a vulvar specialist without having to go to a university.  I wish the US. had a directory. All I find are dermatologists and my internet searching is frustrating. This is so so miserable 😔

Karen.   Can’t you be more specific about the vitamins you listed. You take them internally?  Dose?  Ive added D.    I have the Perrins and Don not feel it helps at all. Plus it stinks. How different is the Emauid from Perrins?    I have found a naturopth who is also a physician.  I plan to make an appointment with her tomorrow.  IM feelin positive about this. Thank you for you’re advice. 

The Perrins does stink! The Emuaid just has a very light scent of tea tree, no one has noticed it at all. I use the emuaid several times a day after I go to the bathroom and wipe. 

I did buy coconut oil as a moisturizer, and will use when I don’t feel any tingle. 

I currently take Ultra Women’s formula multivitamin, a combo Vit D/ K, folate, boron, selenium, Vitamin A and Tumeric in AM. At night I take Calcium and Magnesium.  I hv eliminated sugar, cut way back on carbs and follow a low- oxalate diet ( no multi-grains, no nuts, no seeds, limited dark leafy greens, no chocolate, no peanut butter and limited berries). 

You know Guppy was going to post something about how overall most of these Dr. Are clueless about LS and how to help us. GP’s send us to Gyno, Gyno sends us to dermatologist, derms don’t deal in genitals and send us back to Gyno- it’s ridiculous! I’m only 10 weeks diagnosed and I feel like I’ve read more, researched more and gained more knowledge from the ladies ( and guys) on this forum about LS than the majority of Dr.!

 I have to disagree with your Gyno who says to use Clob everyday for the rest of your life- my Dr. wrote a script but told me I didn’t hv to use it until/ unless I flare again. Daily use seems like it would really thin the skin , make it more prone to tearing and irritation, and why use a steroid 8000x stronger than hydrocortisone when Emuaid or Aloegel with tumeric oil can soothe just as well? You need to see a different Dr. And you need to keep asking questions, don’t just take their standard- quo as the best treatment for you! 

Thank you Karen. This is really helpful. Some of this I do.  Calcium/K and take Magnesium (for my migraines actually). I was looking for a liquid Coconut oil yesterday at my supplement store and they didn’t have it so will keep looking. I have tumeric but stopped using it because I take so much Excedrin for my migraines / headaches and they both thin your blood from what I’ve read. I know it’s an anti inflammatory so made sense to me to take it. I just need to cut the Excedrin. I’m killing my kidneys... I’m pretty sure.  I hit that “Purchase” button on my Emuaid Cart and buy it.  Thank you again!!! 

I totally agree about the GYN. She was a waste of time. I knew she did not know what she was talking about when she said “every day for the rest of your life”. I felt like an inconvenience there and will never go back. There such a disconnect. But yes it would really be helpful to have specialists and easy to find 

Your post was helpful. I was treated for LS over a year ago and then it pretty much subsided, so I discontinued creams, etc. Now I find it is back, worse than ever. I am looking into the Emuaid Max which I can buy online, but the site I am looking at says it isn't for internal use due to the ingredient Tea Tree Oil. And where I would have to use it, is pretty much "internal!". Have you or anyone else had any difficulty using the product in this area? Thanks

Do you hv Lichen Planus and need to put it in your vag? If not,  Emuaid is safe for all inner labia lips, clitoris and around and in the anus- is also used for hemmerhoids  so it is safe!