Treatments for Lichen sclerosis besides steroids

I have had lichen sclerosis for over 10 years. My gynecologist advises me to use Halobetasol twice a week and Premarin twice a week; however when flares occur I am advised to use Halobetasol twice a day for two weeks, then once a day for two weeks, and then once every other day. Then it is back to maintenance level. I first used Liidocaine and Prilocaine to numb the area, then she changed it to just Lidocaine. I am now using a compounded mixture to numb. None of it seems to really work. I seem to go from one flare to the next with only a few days in between flares. I am in a great amount of pain. I put ice packs on my vulva for 20 minutes at a time. This disease has ruined my life. I cannot make love to my husband and it breaks my heart. At one point, my gynecologist prescribed Prednisone. I hated the side effects from that. I think she is out of ideas. I need to see her, but I wrecked my car and am not going to ask my husband to drive me to her. I live in the Kansas City area. If anyone wants the name of my gynecologist I would be happy to tell you. Any advice is welcome. I feel so sorry for all of you who have this dreadful disease. Thanks for any help you can suggest.

I’m sorry you are dealing with this. It’s life altering. I am finally in a better place... my current regimen: -using liquid organic coconut oil externally each night after showering, -using a compounded formulation of estrogen twice a week and -clobetasol ointment as needed which is now, rarely! When my issues started, I was told to use clobetisol every day- I had so much irritation and dryness- honestly, the coconut oil and the compounded estrogen has made a world of difference for me. I keep the clobetisol ointment handy, but mercifully have not needed it in almost two months!

Hi everyone. I was told I "most probably" have this and am now asking for a biopsy. I have other autoimmune issues but this one came out of left field. What is our risk of cancer? I didn't see any other pages on this...I would love your advice and knowledge. Is this really an autoimmune disease?
What symptoms, ect...I have had intense burning and itching for months, just went into Mayo yesterday and was told there are some things were "folded in" but not much explained...given a pamplet. I wish I had asked more questions, now...
I was given a steriod, used it yesterday and it increased the burning...Please share your experiences with me, if you don't mind.
I read that it is rare disease (I already have two others) ugh. Where do you get treated? Derm? Gyne?
Any help is much appreciated, thank you in advance!

Both gynecologists and dermatologists can treat lichen sclerosis. Originally, it was my gynecologist who diagnosed my lichen sclerosis. By not using the steroid, clobetasol, because it caused stinging, it got much much worse. My gynecologist who is practicing less now, (I am 65 and this was diagnosed in my early 30's), referred me on to a new gynecologist who sees many women with lichen sclerosis. There are a few other steroid ointments you can try and sometimes compounded as a cream as opposed to a gel consistency works better in terms of the burning. I know use my clobetasol religiously and there has been some improvement and it no longer stings as much. It is definitely an autoimmune condition and doing nothing is not an option: it will get worse. In addition to the clobetasol, you should use coconut oil or olive oil or crisco shortening on the area for dryness. There is a risk of cancer of the vulva, not sure what it is but I'm sure that statistic is easy to find and/or the gynecologist would know. Oh, it's not really all that rare. I also have a other autoimmune conditions.

Thanks Sue, your input was good to know. I am going to talk to my derm next week also. I am advocating for the biopsy to be sure...
I mentioned to the provider in email today that it burns using the steriod...Compounding as a cream is a good idea...

Yes, had the biopsy many years ago. Interestingly at that time (early days) biopsy was inconclusive. My gynecologist was certain 30+ years ago that it was l.s. and she was right. However, as the years progressed, it was no longer necessary for a biopsy.

I was Dx with vulvar LS two years ago by a GYN. Now under control with Chlobetasol. This year I had one two inch oval pink spot appear on my torso. Biopsy done — LS. Since that time I’m seeing pink/red splotches on my torso, both sides. Dermatologist says this is LS also! No irritation. A bit scaly like soft emery board. I have not been consistent using Chlob as the patches “don’t bother me”. Should I get second opinion?

Use the clobetasol. LS worsens overtime if left untreated and it will then bother you. There is also a risk for vulvar cancer if LS is left untreated. Not advisable to leave untreated. Take it from one who knows.

I concur. LS must be treated although it always comes back. It could be worse without treatment. This is one of those hateful diseases of "no cause, no cure." I use halebetasol, but will ask my gynecologist next week about switching to clobetasol. I did a bit of reading and one of the sites said halebetasol lasts longer after applied. I read about foods to avoid if you have lichen sclerosis. It is a long list and I eat many of the foods. I am not ready to change my diet. I eat what we have and mostly what my husband cooks. My gynecologist is the fourth one since feeling this pain many years ago. I trust her and will stay with her. I use a compounded ointment to numb the pain. Right now I am using haebetasol twice a day. Maintenance is twice per week and twice per week of Premarin. Didn't one of your doctors tell you to use the clobetasol after confirmed LS? I have appointments with my gynecologist every 3 months and I never make it to that time before I need to see her again. We always keep that as my back-up- appointment and I will be using that next week. Good luck to all of you who are suffering this dreadful disease. I have never hear of the spots on both sides of your torso. Please ask your doctor what to do! @joybringer1

We are all so different. And I can only hope I can give you hope though I have no solutions and no suggestions. I was diagnosed by an experienced gynecologist and treated accordingly for LS. For some unknown reason my LS went away. I had it for about a year and a half. . It was awful. And then it went away. My only treatment was Clobetasol . I knock on wood scared to death it will return because I am claiming to be free of it. But the date on my last Clobetasol prescription was March 2019. So sometime after that it went away. I am 79 and have not been sexually active for many many years if that might be questioned. I have no idea what made the change. The only changes in my lifestyle and pattern during that period of 2017 to 2019 was I lost 35 lbs and was primarily on a salt free diet. Not low salt But as salt free as I could get it ! (Salt triggers my appetite is why I chose this to lose weight. ) In no way whatsoever am I suggesting a low salt or salt free diet made the LS change I am just reporting some of the details of my experience. Because I truly don't know of any thing that might possibly contribute to the LS going away. I just hope this can give you some hope !!! I wish you the best.