Vulval lichen schlerosus

Women's health
1

Hi everyone,

I have recently been diagnosed with lichen schlerosus. My gynae advised me to apply the dermovate cream..all over until symptoms resolve and then monthly after that.

However, I left her office unsure of what I had been told as she got her Secretary to print out a chapter on the condition for me to read at my leisure. So armed with this and a follow up appointment for 1 years time, I read the article and got the fright of my life.

I Googled galore and came across Dr. Goldstein.(dermatologist in the states) So I'm trying to get a plan in place as the gynae doesn't seem too bothered. I've asked my gp to find a dermatologist with an interest in vulval skin.

I'm in Ireland and feel like I could be in the middle of the desert with the lack of knowledge, support and professionals with knowledge in this disease. Does anyone know of a dermatologist that knows the diease? Any support groups etc?

Thanks x

2

Hi Deb, you have found the right forum.  All of the gals here are great and give great advice.  Usually, the gynea docs say to apply the cream twice a day for a period of time, then once a day, then everyother, then twice a week etc.  I would get him to give you a real schedule....he may have to do some homework!  So many doctors don't know much about this disease.  Many use oils for keeping the area moisturized.  I use cornstarch to keep area dry and not skin sticking.  Good luck, you will be fine once you get stabilized.  There are many worse conditions out there than LS.  Let us know how you get on.  Also, I am in the US.

3

Thanks Jeri, yes I just contacted the gynea again this morning. I'll try see her again so as to get a more formalized schedule. I think that's the most frustrating part. I've been on treatment nearly 6 weeks and still get some pitch, prime it will take a lot longer than that to resolve.

Also I was wondering about topical oestrogen? Does anyone know if it prevents further resorption of skin.

Thanks

4

What skin condition is worse than LS?   Everywhere I go (I travel a lot) I have to be worrying about coconut oil dissolving into liquid, which sometimes spills into my bag.  Going to the toilet is a nightmare.  Sprays do not work for me, I have tried them in all forms and sizes!!  I have to carry a small container of water and literally wash with toilet paper.  Sometimes I find the whole process utterly depressing, but yes, there are always people so much worse off and it makes sense to be positive!!