Treatments for Lichen sclerosis besides steroids

I so wish I knew why mine stopped so I could share it with you and hopefully end yours also ! And I also hope and pray mine won't return. But hopefully my story will serve to give you hope ! And for it to soon go away !

At my last visit to my GYN she said my lichen sclerosis is in remission. Why do I still have the burning and stinging? I am beginning to wonder if I might have some nerve damage since I have had this for many years. My labia are still red and swollen and I am still miserable. Does anyone with this disease have a similar problem? If so, could you please tell me what you have done to alleviate the burning/stinging? I still use my compounded mixture to numb the area, but that is only temporary relief. Is there a med that might help? I have an appointment with my PCP next week so I will ask him about this. Thank you for any suggestions provided. Meet the new year, same as the old year. @joybringer1

@joybringer1 You mentioned having an appointment with your PCP. Is that coming up this week or did you already go? If you did go, what was the advice/treatment/outcome?

Yes, I go every year. There is always the risk of cancer of the vulva. Gynecologist needs to see if skin is getting worse, improving or same as year before.

I always read anything new on this issue and have so much sympathy for all of you. Yes I do go every year except for this year and because of the corona have delayed my appointment. What I have been given is Triamcinolone Acetonide Ointment USP 0.5%. It does work on a flare, but what is it doing to me I have no idea. The coconut oil everyday that someone mentioned above has helped to space out the flares some. I had been using coconut oil off and on but not everyday. I think this is a good idea. In some research I found it interesting that a trauma occurs before getting this problem and it can be anything from a major surgery to anything the body considers traumatic. I also read that it maybe auto-immune or not and you probably have a autoimmune disease already. This year I found that I have underactive thyroid and am on medication for that after pleading for a doctor to test my thyroid for a couple of years. My doctor retired and the new one did it automatically. This theroy has been kind of the case for me after having a major surgery in 2013, I developed Lichen Sclerosis and now know that I have a thyroid problem. Hope this helps.

@erikas, I had my appointment today. My doctor believes (as I did) that my nerve pain is owing to "that area" being painful so much of the time. He said he wouldn't prescribe gabapentin which saved me the time to tell him I wouldn't take it. There is 6 percent of gabapentin in the compounded cream I use to numb the area. We started talking about all of my body parts that burn and he decided I could try 20 mg. of amitriptyline at bedtime. I had already been taking 10 mg. We both laughed when he said, "You're a hot lady!" Yes, I guess I am with lots of burning. Ah well, we shall see what this brings. Thank you for asking. @joybringer1

Hey All, hopping in here to get any input on the Mona Lisa Touch, a CO2 laser treatment. My OB recommended it! We’re thinking of dropping the money for it, because as he said, “you can’t put a price on sex.” Haha! @kitten92 I saw in posts that you were getting it! Any results? We’re looking at 2k for 5 treatments.

I have had LS of the groin for over 20 years and used many topical steroids and have topped using any steriods now and only using coconut oil and emuaid sometimes. Have a lot of burningand pain and will see a new dermatologist the 27th,

@sue225 I use clobetasol but as sparingly as possible. Are you worried about your skin thinning in your private areas?

@ret18 unfortunately I'm one of the few people allergic to coconut oil - it burns when I tried to use it in my privates so i have found only A&D ointments help.