Does anyone have experience of Lichen Planus Vulval?

[Fullnessmind]

Recently diagnosed with this condition and feeling completely put of my depth. Am now on a steroid cream and awaiting an appt and biopsy with gynae. Any tips/personal experiences would be great as there doesn't seem to be much online. It is so painful and debilitating but I'm trying to stay positive.
Thank you :)

There are support groups- the Eve Appeal has info.

Sorry OP I think the Eve Appeal just mentions it as it can (in rare cases) lead to other diseases if untreated.

This might help

www.lichensclerosus.org/

Thanks Jingling that was very useful :)

I have Lichen Sclerosis diagnosed 4 years ago. White spots appeared with no itching. It's an auto immune condition. I use steroid cream and spots disappeared and never came back.

Mercurial thank you, reassuring to know yours hasn't flared again.

Fullnessmind yes, I've been told as long as I use the steroid ointment I should be ok. I use every two weeks.

My gynecologist told me I didn't need treatment and a specialist told me once the LS had gone to discontinue. I was given a lot of bad informstion. Good luck.