Recently diagnosed with Lichen Sclerosus and clueless!

[MySpi]

I was hoping to have advice from any one who’s had this pain in the arse condition. I’ve recently been diagnosed with the above, I have some white patches by my vagina and some cuts. I’ve been prescribed Clobetasol but am clueless where to put it other than on the white bits. I’m also very sore on the inside of the inner lips 🙈 sorry! Do I put it on there too?
currently looking to pay to see someone as I’m looking down there but am not really sure what to look for other than obvious white 😭😭

Have you seen a specialist ? To rule out anything else ? By getting biopsy

I am starting treatment for VIN 3 and condition was picked up after biopsy as I had white patches

@MySpi have you seen this site?

https://lssupportnetwork.org/lichen-sclerosus-overview/

I’ve got it and am managing it pretty well. Don’t be afraid of using the steroid where you need it.

Thanks for the replies.
ive been referred by my GP but am also looking for a specialist.
@Alwayslrm how are you doing now?
@beetr00 ive been living on that site today!
@MaxandMeg how long until you felt your symptoms were controlled.
mine are small white patches and some redness.
It doesn’t look too bad but it’s sore as hell 🙈

I was diagnosed (via biopsy) last year. I'm atypical as I don't have white patches and I don't itch but it hurts all the time and it was red until I used a strong enough steroid.

There is a very good facebook group for LS called "Lichen sclerosus - sclerosis Support Group for women". I learnt almost everything I know from that.

I read recently some advice from a dermatologist saying that you should rub the steroid in for a minute and a half. Which I've started doing (it seems ages) and things seem to have improved a bit.

I was told to put the steroid wherever it hurts or wherever there are white patches or splits. You can use it around the anus if needed, some women are more affected there than the vulva.

Have you been advised to avoid shower gels and using almost anything down there that isn't an emollient? And if you shave or wax down there, stop. And possibly avoid perfumed laundry detergent at least for your underwear (I use Surcare). I also switched loo roll to a bamboo one as normal stuff feels like sandpaper.

If you can get to London Dr Victoria Swale is a very good private dermatologist (although she didn't diagnose me).

@terceira
that sounds the same as mine, very little itchiness and lots of soreness and feels like I have an infection.
Im on that group already, and there’s some great advice.
im also going to do the soak and rub.
how do you find your redness now.
While it feels better today, I can’t imagine ever having ‘relations’ with my partner again 🙈

@MySpi I think it's less red but I must admit I haven't looked for a while. I don't really care what it looks like, I just want the pain to stop! We haven't had sex for about 18 months. Partner is very understanding. I do want to try again but I have the fear. Apart from the odd few hours or a day or two here and there I've otherwise been in pain but it does seem more comfortable in summer. And it is much worse when I am stressed. I'm trying Curable to see whether it will make a difference.