Vulva pain & burning - lichen sclerosis (sp?)

I can't post this to the sexual dysfunction area because I'm not far enough from surgery so figured this was the next best thing.

I was just diagnosed w/ genital lichen sclerosis. It's a chronic skin disorder that most frequently appears in post menopausal women. If left untreated it can cause scarring that makes intercourse pretty impossible. Luckily my uro-gyn seems to have caught it very early. It does cause pain and burning so it is classified under the overall vulvadynia category. As far as I know I didn't have this before my hyster (lucky me).

So I'm on high potent cortisone steriods daily for 2 weeks and then 2 weeks of every other day and than probably 2x a week for the REST OF MY LIFE. It's controllable but not curable.

So anyone out there that has this in the early stages? How are you coping with it.

I've definitely not been one of the lucky ones w/ no complications from the surgery or probably more appropriately the surgical menopause. At least I had a uro-gyn that realized what it was and got me on meds early.

Thanks for any help

Hi,

Me too! Although I'm sure neither of us want to be part of this club, it is very comforting to hear of other women with the same issue.

My uro/gyn diagnosed the Lichen's about 3 months ago. I suspect I had it right after my TAH/BSO 6 years ago but I had a lousy doctor back then. Mine is also in the early stages I guess, because I've had no problem with intercouse. I had to use the Clobetasol cream daily for 2 weeks then only a few times a week (he wasn't too clear about that)..I use it twice a week. To keep the burning and itching at bay without the steroids I use Calendula cream, it's OTC, that I get at my compounding pharmacy and Premarin cream 3x a week in addition to the Vagifem. I spend more time applying creams than I would like, but it is very important. From what I have read, this condition is akin to vulvadynia, it was in my research I read about using the Calendula and Premarin creams. Once you get into the routine it's not too bad. I do have to be careful with anything that fits too tight, like jeans and I wash with a sensitive skin body wash (BTW, never use bar soap). All of this seems to keep the burning/pain/itching away, and I can definitely feel a difference when I stray from the regime.

I have also just been diagnosed with Rosacea and am wondering if somehow all the skin conditions are connected.

Please feel to PM me whenever you need to and take care!

Diana

I have not had much luck keeping my LS under control. I use a steroid cream and Testosterone cream. The irritation is under control, but I tear at the drop of a hat and i am unable to enjoy intercourse. Any help wold be appreciated.

Misty -

I am so sorry to hear that you have LS. I was terrified when I got my diagnosis. Lucky for me I was very early and things have been doing well for me. I use a bit of steroid creme and vaginal estrogen that I use on my vulva.

You will want to find the Yahoo group run by Dee Troll. She has had LS for something like 18 years and has done extensive research on it. From her research the recommended approach is steroid cream to get the itching under control, estrogen creme to rehabilitate the skin (stop the tearing) and testosterone to repair adhesions. There are many people on the site (including Dee) who have had the same issues as you.

Steroid creme usually starts out for about 6 weeks and then should taper off to maybe 1 or 2 times a week. Only applied to the area where the white skin is and as little as possible. Estrogen 1 or 2x a week and testosterone about 1 time a week depending on extent of adhesions. Dee talks about the bases used in the testosterone and that it should be a certain base (can't remember what it is) Also Eucerin now makes a body wash that is non-fragrance, non-soap and I love it!

This is all a synopsis of Dee's protocol so please go to the site for more information. She's wonderful and you can e-mail and contact her directly.

that this works out. Keep us updated on progress.

G.

Thank you! I found a Yahoo group last night, hope it's the one you were telling me about. I have an appt. with my gyno on the 28th. My skin was so damaged 2 years ago, when I was diagnosed, that I think it may take a while to repair. I will talk with him about adding the estrogen cream externally. Hope this all works. Thanks for the reply.

Misty -

I hope it is Dee's group. It is one you have to sign up for because it's a private forum. You will find information on meds and all sort of things there. And of course you will find her name in it. I will try to get the name and get it to you.

Dee had very damaged skin as well and it took her awhile to get things back but she did it so that should give you hope. You are not alone and it can be controlled.

On the testosterone the recommendation for LS is that it be in an aquaphor base. There is a reference to a compounding pharmacy that many members use on Dee's site.

Good luck and keep us posted

G.