Treatments for Lichen sclerosis besides steroids

@beverlydelores. I’m sorry to learn that you have lichen sclerosis. I’m going to ask other members @lindajoan @joybringer1 and @artist01 if they will join the conversation.
Do you find that the clobetasol helps?

Yes it does help. But I am afraid to use it very much because it also can cause problems.
So, I am trying to read everything I can about different moisturizers to use to help

@becsbuddy and @beverlydelores :
Thankyou, Becky, for referring me as an LS contact for @beverlydelores. However, I had an oral biopsy recently and am clear of OLP, LS, etc. I was diagnosed with aphthous stomatitus, (inflammation of the oral mucosa), which, after two years of misery with mouth ulcers and a very limited diet (no citrus, no acidic, etc.), has miraculously cleared up! Because I have IBD, and am also lactose and gluten intolerant, food almost became my enemy! It's wonderful now to be able to eat so many foods that I couldn't enjoy before.
Lactose and gluten intolerance are manageable, without the third limitation of acidic or citrus foods.
I wish @beverlydelores every success in her difficult journey with LS.

I do not use Clobetasol, but rather Halobetasol. My gynecologist (the fourth one as I sought answers) has me using Halobetasol. I asked her about Clobetasol, but she said the Halobetasol lasts longer. I go with whatever she is saying since we have been together for about 13 years. I use Premarin twice weekly, also. I had surgery to remove pre-cancerous lesions and that was not good, but necessary. It is important to protect the area and I use Vaseline in between the other two. I try to use it every day. I am on my fourth or fifth version of a numbing cream, compounded, that is 6% Lidocaine and mixed with Aquaphor. I tried Lidocaine and Lidocaine and Prilocaine before going the compounded route. I wear men's boxer shorts in a size medium (too large for me really) to avoid having underwear touching my sensitive area. I wear skirts at home so this works; however I can only wear this underwear beneath skirts in the summer when I leave home. Otherwise, if I have to wear trousers, which I do in the winter when I leave the house, I have to wear regular women's panties. You have my deepest sympathy for having this horrific problem. May you be one of the lucky ones and get through this. I know I am stuck with this for life. With all good wishes, @joybringer1

Clobetasol is not for me. It gets m neurological type reaction. I used dovobet odd thin about it is the last script for dovobet I got the generic brand last time dovobet was ordered which caused a reaction like I had from the first steroid. I have had it for years now at this point in time I have had one trip to the cancer clinic as the lichens had advanced. Fusing scarring ect. I also have a disorder called multiple chemical sensitivity...I react to many drugs and chemicals used in daily life. The clinic surprised me by offering no drugs which I was happy about. No new drug means no new drug reaction win win. Here is the real win the treatment was to soak in warm water then apply an essential oil 3 times a day. Emu oil I was told would b the best oil for healing this problem. I chose to use almond oil because I know it does not cause a reaction. I had a bottle of Bells pure almond oil in a glass bottle and a bottle f Aura Caviar sweet almond oil has vitamin E and sunflower oil added. I started with the Bells because it was the least reactive being single ingredient and in glass. I could not believe how well it worked. I used the small bottle fast. Then used the Aura which was thicker still better than nothing but I found itbult up in my skin after a few days caused a flare. I was told not t use any soap ever but I had to wash off the build up. I used the only soap I tolerate with my mcs which is Bambobaby..not bamboo it s sold but bambonature.usa.
I had to use the dovobet non generic to get things to settle.i did no have ny Bells left went back to the Aura.....I use much less than I did prefer Bells will try Emu once I research and settle on which one will be he least reactive. I have had a reaction to Amlodipine which I suspect may be a lychen reaction...it look like much planis. I researched it and learned high oxlate food many of which had been eating can make it worse. Oranges all citrus spinach beans ....also suspect this is all connected. I took a ppi which by the way is listed as one of the rugs among many that can cause a lichen reaction. I am not taking any drugs that can cause a lichen reaction unless it is life or death. Hoping avoiding drugs and food that cause lichens will help the soaking and oiling will keep the lichen from progressing to cancer and slow the fusing bleeding. The emu oil is suppose to help thicken the skin and repair damage. I will report back once I have tried it.

Beverly I would suspect the tacrolimus is causing the burning, simply because I was ok with the Clobetasol but couldn’t tolerate the tacrolimus. However people react differently to medications so you won’t know if this causes your burning problem until you can sort it out with your physicians. Good luck, hope this helps.

What foods should be avoided?

I suggest you all check out website “Stuff That Works” for everyone battling LS. Many ideas, experiences and knowledge.
Just had a biopsy last week. Hope it is negative. Had 3 laser treatments two years ago. Really helped but expensive. Around $2000 at a clinic in Halifax, Nova Scotia, Canada. There are same clinics in USA.

I have had Lichen Sclerosis for over 2 decades now. Started having symptoms shortly after menopause which my gynecologist attributed it to. It took about 10 years to be diagnosed. My dermatologist actually made the diagnosis. Needless to say I changed gynecologists. Today I see both on a regular basis. Due to the late diagnosis I do have scar tissue and have a couple of spots biopsied. For years I have used a compound of Balneol cream compounded with 1% hydrocortisone once to twice daily with Estrace cream a couple of times per week. Of course Medicare doesn't care to pay for any compounds. In the past year I found that Aquaphor 1% seems to work even better. This is over the counter and much less expensive. I also need to use regular Aquaphor in my anal area now, too. This brings me to underwear as all that cream can be a problem. Jockey makes a worry-free moderate or heavy underwear that has worked great. I enjoy taking a spin class or riding my bicycle so I "grease" up and wear the worry-free as it is padded. Everyone is so different but wanted to let you all know what has worked so far for me.

@gmabecky1955 it’s wonderful that you had had success with living with lichen sclerosis! I included a link to another discussion on lichen sclerosis where your information will be so welcome!
https://connect.mayoclinic.org/discussion/lichen-sclerosis-anyone/
Has your skin stayed healthy even with the use of all the creams?