Treatments for Lichen sclerosis besides steroids

Dear Joy,
I agree w you and likely most people on this site that LS is a nightmare! When I was told I had this I cried for 2 days. It’s embarrassing to talk about , limiting in your activities and painful. The Mona Lisa is sadly not covered by insurance but it should be !! It’s the only course of action to stop the progression of this nightmare. I’d like to speak to my dr about a possibility of setting up a foundation to help woman afford this . My dr was also kind enough to give Cancer patients/ survivors a discount. She feels it’s the only route C patients can take bc they generally cannot use estrogen creams . Maybe lobbying the insurance companies is the way to go . Lasers are not considered essential by insurance companies but in this case it very much is essential.

I’m knew to this thread. I was diagnosed with lichen sclerosis about 5 years ago and it has drastically affected my life. Sex is out of the question and I have itching most nights. I have it controlled with a steroid cream that I use when the itching becomes more intense but I’d like more information about the laser treatment. Can I hear from anyone who has had tuis treatment? Or any recommended treatments besides the steroids creams? Any recommendations on vaginal moisturizers that won’t cause a flare up?

It’s miserable in all the ways you mentioned. I have had 1 of3 treatments of Mona Lisa laxer treatments and I already feel a great improvement. It’s pricey but it’s worth it . I am still careful not to do anything that I know may cause irritation but I know it’s considered the only way to stop its progression and give relief of symptoms. Go for it !!!

I’m afraid to do anything that will make it worse especially since it’s controlled at this time. The research on laser treatment seems unreliable. The inly laser treatment in my area is the Juliette. Have you heard if it.

I agree that that treatment’s definitely help with symptoms of LS. It’s been almost two years since I had laser treatments. Worth every penny! I still use Betaderm and Aquaphor ointment faithfully, do not use soap, wear white cotton panties, don’t wear tight clothing. My clinic follows up on me and right now, don’t feel like I need another round of 3 treatments but good to know that they are there for me. For me, it was the best fix for this disease!

@blossomt, I have had LS for over 10 years so have gone through various products. For itching, I took Hydroxyzine 25 mg. every 8 hours. I no longer itch, but the burning is awful. I am on either my fourth or fifth compounded ointment Lidocaine 6% with Aquaphor and it helps a little. I just saw my gyn on Tuesday (I go every 3 months) and I am now using 1 gr. of Premarin every night for 2 weeks then 1 gram every other day. I suppose at some point I will be back to 1 gr. twice a week. I have ordered a set of dilators and I am supposed to insert for 10 minutes at night using a little lubricant on the end of the dilator. You can imagine what the goal is for these dilators, increasing the size as I am able. I continue to use Halobetasol twice a week. What a week this has been. First, my gyn, then my eye doctor to pull out ingrown eyelashes, then another doc who diagnosed Eustachian tube disfunction. I supposed this came from my head cold that turned to pneumonia. It is always something and my dear husband has to drive me everywhere. We have nothing planned for today. Yay! With all good wishes, @joybringer1

I’ll be sure to ask my dr at my next treatment. That will be early feb. I’ll post her answer for you .

Thank you.

Hello, I have recently been diagnosed with LS. Also, I have several autoimmune problems. I had never heard of LS. before now. My dermatologist put me on clobetasol twice a day when it flares and tacrolimus all other times.
Does anyone have any side affects from these meds besides the burning? I am feeling really bad in the mornings and wonder if this medicine is the cause. Also, how do you know if it is progressing? Because it is hard for me to see what’s going on.
I have read that there is a laser treatment. Does it stop it from progressing? Does not wearing underwear help any? I have so much to learn about this awful disease I am on the internet every day reading about it. Any help is appreciated!

A sad welcome to this horrible club. I'm also newly diagnosed. I use a mirror each time I apply the clobetasol. Best way I know to check what's going on. My regime has been the clobetasol OINTMENT at night before bed after soaking the area for 15-20 minutes. I really rub the ointment in for about 2 minutes. I'm to do this for 2 months, followed by twice weekly maintenance. Best of luck.