Lichen Sclerosus: Any other women dealing with this disease?

That is another steroid. It didn't work for me.

Once I started with the meds I felt relief. But sex is out of the question. Horribly painful.

I am using Taro-clobetasol propionate and it has been a welcomed relief after many years of going to doctors to finally get my diagnosis of Lichen Sclerosus.
I have a female gynaecologist finally. It is a lifelong disease that must continue to be treated. I have never heard of lazer treatments for this.
I obtained complete relief from the above medication. But, I am interested in other peoples treatment.
When first diagnosed I use the medication daily for a month and now it is twice a week. No bathing in tub. Showers only. No soaps or scented products
that will irritate the sensitive skin. Good luck! I hope to read and hear other comments, Thanks!

Hi nekcarolyn
LS
It is not curable but treatable. I am using an ointment received from my gynaecologist and it has given me so much relief I feel normal. At first daily for one month and now twice a week with followups with doctor.
The ointment is Taro-Clobetasol 17 propionate. It is a steroid but works wonders. I hope you find a suitable treatment. It is treatable as long as you follow Dr directions. This is not a disease for a dermatologist.
Good luck and please try not to worry. (Easier said than done).

I'm new to the group, been dealing with symptoms now for about 7 months. Had my annual pelvic exam & asked what was going on, was told, "you have a little vaginal atrophy... let's try an estrogen cream." I started it, but it DID NOT HELP! I have continued to have itchy, tearing, breaking skin on my labia & then started noticing bruising & discoloration. I started using Emuaid 3x daily, & I use a steroid ointment twice a week, after I shower which has really helped. I take baking soda sits baths & regularly clean the area with baking soda water in a perineal bottle, & I don't wipe anymore, I just pat dry. I have an appointment with a vulvar dermatologist specialist, but not until March.
I no longer take epsom salts baths (they seem to make it worse), but I love them for sore muscles. I'd love to go soak in a hot springs, but I'm concerned. Anyone have any experience with hot springs soaking & side effects of LS?

Hot springs have salt same as epsom salt. Very irritating to the LS labia.

Thank you, that was my fear... I guess that will be something I'll never be able to do again... that's so sad!! 😔

What about public hot tubs, like at the gym?
Also, has anyone had luck with dietary changes, & if so, what did you change?

I have just spent time reading over past comments and saw your reference to "lesions" which is not mentioned in most of the posting comments. So I've been wondering if I am the only one plauged by them. I never had these lesions or these awful, hard bumps until I began using the steroids, so I asked two gynecologists and my PCP if the steroids could have caused these painful bumps. They all said "no." But that doesn't convince me it's not possible. But then I thought maybe it's just LS getting worse despite the steriods. So now I am afraid to use anything now and my stress level is way up there. I've seen comments that stress makes the problem worse. I would love to find a vulvar specialist or any specialist who knows more about this awful condition. How does one find such a person? I'll start asking for referals from the doctors I've already seen but you'd think with my complaints about meds not helping they would have provided names if they knew of anyone.

I'm in Utah, & have found a vulvar dermatology specialist... where are you located?