I've been diagnosed with Lichen sclerosus

Hi SnappyCat Thankyou so much for your very detailed helpful advice. I've been given a moisturiser called Replens MD for now but if no difference in 7 days it will be steroid treatment. Will see how it goes. Sooner the better as it's driving me mad. Doctor told me you get flare ups of it but they don't know what causes these. Thanks again really helpful. Jill

As for the steroid. Most go on Clobetasol, but I've been on a different one...lots of options and strengths. Be sure your doc writes a script for OINTMENT vs. Cream...ointment tends to have fewer side effects and absorbs into the skin better. You should expect to be told something like

2x a day for a week.

1x a day until symptoms subside

1x a day 3 x a week for the foreseeable future.

When you apply it - use a pea sized amt to cover the whole area. It is best to soak in a tub or sitz bath for 20 minutes before applying (softens the skin to absorb better). Rub it in for 90 seconds to get it deep into skin. Don't apply beyond the hair line and don't put so much that it is messy or melts...then your good skin will be negatively impacted.

I'd confirm these kinds of things with your doc...

Hi snappycat, great advice. one query though. You say pea sized amount ALL OVER. I am confused here as my imformation was only put steroid on active areas because as you say your good skin could be impacted.

It's so confusing all the different opinions. I am seeing my Gyn tomorrow for 6 month check so I'm going to ask him for clarification.....if he can!

I agree with everything said in this post. Couldn't have said it better myself.

I put mine in the whole area because that's how my flares happen, but, if you're going to the doc, ask him/her to show you precisely where to put it...

When I had the clobetasol, doc said just use it on the affected area. Now, I am awaiting biopsy results. Great fun, biopsies....Wasn't that bad. Less pain than root canal.

News Note: Began using EmuAid on some sore places and it seems to be helping. Expensive ($50 for 2 oz) but, hey, if it works... it's worth it. Ya'll might try it...

I second that very good advice given. Just wish we had more help and advice from GP's etc so many know very little about the condition 😦

Hi SnappyCat well nearly a week of moisturiser and it just hasn't worked. I can't see the doc till next Tuesday so will have to wait. The itch has got unbearable and still driving me insane!! I keep referring to your post to help me with some questions to ask. Lots of advice there. Thanks again. She did say if moisturiser didn't work it would have to ne a steroid. Will let you know. Jill

If you have LS, it "needs to be" steroid. None of us like the idea of steroids in perpetuity, but statistics say, it helps prevent cancer for LS patients.

In the meantime, go get a cream that has lidocaine in it...lanacaine, vagicaine, a benadryl cream...any of those...it'll help get you to your appt.

I looked up Clobetasol and the name here is Dermovate. I remembered some years ago i was prescribed this for a skin rash on my arm. Well i found it albeit old stuff but i thought i would give it a try. (desperation). I must admit I've gone all day without itching !! If this keeps up I'll ask for it when i go to see the GP. (fingers crossed this works). Thanks again for all your information. Jill

Dermovate is the best thing i have found to keep LS under control and helps with flair ups. Hope it continues helps you

jill, any good steroid. the thing is, for most conditions you only want to use a steroid for a short time...but with LS, it is the only thing that has been show to reduce the risk of cancer...and used carefully, the risks don't manifest with LS. if you search on "LS long term study 507 cohorts" you should come up with a medical study...print and take to your doc

My GP knew right away what it was, but too many GPs don't know enough about it. And then again even if she knew what it was she was ready to try anything other than what actually works. She wanted to help me but as a GP is not allowed to prescribe Clobetasol and didn't tell me about it, and instead prescribed a cream that didn't work. It wasn't until I insisted on being referred to the Vulvar Clinic at one of our hospitals that I got the proper treatment -- Clobetasol 3 times a week and then down to twice a week and Premarin internally and externally twice a week on alternate days. I would not rely on a GP.

Hi well saw GP and told her about the steroid I'd been using. (dermovate) and she said it was way too strong !! Told her i was desperate so now I've got a massive bottle of cream for dermatitis etc and a tube of Betnovate to use once a day. She has referred me to a gynecologist. She said once they know what it is then they can treat it. Quite honestly i give up with them. Don't know what the waiting list is like. L ooks like I'm going to go private if it's too long. Anyway that's the story so far. Just got nowhere. Thanks all for your replies.

I suggest that when you go to GYN, you go with some medical literature in hand. If you say that you read it on the internet, they'll blow you off. If you come with copies of medical literature, they will pay attention. Your GP is likely behind the times...

It is not necessary to be on Clob/Dermovate...it is nec to be on a steroid, unless you have a good reason not to. use whatever steroid you have.

Saw GP yesterday and told her about Dermovate and she said it was far too strong so gave me Betnovate and said i have to see a gynecologist. I must admit the Betnovate has helped a lot so far. Why I wasn't given that in the first place I don't know. Will see how it goes.

Jill, I don't think any of this is alarming. I use Betamethasone, which is, I understand (at least in one of its forms) similar to Betnovate. They are both steroids, both stronger than Over-the-counter potency. They may have different carrier ointments, etc. I'd hold on to the dermovate...but waite to see what GYN says.

If you're responding well to Betnovate, that's great.

Yes i must admit no itch after a month of it. I'll keep on with the Betnovate. I was told once a day for 2 weeks but might keep on if it keeps working. Must say I had to smile at your expression 'blow me out' (never heard that one before). First smile in a month. Thanks again for all your advice.

Jill, All people are different, but, that said, here's what 2 Derms have told me:

Use steroid 2x a day until your symptoms disappear. Continue for 1 more week.

Then, go to 1x a day for a week.

Then, if all is still well, got to 1x a day, 3 days a week...and continue.

Keep smiling...don't let this disease take your life from you!

Dear Snappy-- Interesting Use until your symptoms abate. No one has told me that but, I just got "sort of " diagnosed this Tuesday (3 days ago). Pathology report is "suggestive of hyperkeratosis and pigmentation and early LS" Whatever.....

I love the "Blow me out." comment. Never heard that one either. See what you can learn on here....

Be well.

bis

Hi well i was using Betnovate for a week and doctor phoned to see how I was and must admit I was fine. She said there was no need to see gynecologist. Well the following week I had the most awful burning sensation. Not using anything at the moment. Burning stopped. Just discomfort. Seeing doctor Monday. Would be pleased to hear any suggestions of what else to ask for. It's obvious betnovate doesn't suit me. Be good to hear from you. Hope you're well. jill

Hi, I have never heard of a doctor giving someone with LS a moisturizer, no wonder you are itching! The gold standard treatment for LS is always the steroid cream. That would raise a red flag for me. You might want to try to find a Vulva clinic if you think she is not that well informed with regard to LS in the future as doctors arent always to be honest.

Well I think you maybe right. I was using Betnovate twice a day but ended up with severe burning sensation. Went back yesterday and she said i will have to find the trigger for this problem and will have it for the rest of my life. Couldn't believe she gave me a prescription for more Betnovate and said keep using moisturiser!!! Can't do anything this close to Christmas but can't go on like this. Thanks for replying.

Jill,

The last doc I saw said pretty much the same thing- have it for life, use clobetasol and moisturizer. But that does not seem like a solution to me. After seeing so many docs all they can tell me is use this ointment for the next 20 years? I am not satisfied with that at all. If it is autoimmune cause, then we can likely get ourselves out of it.

I totally agree with you but where do we go from here? The doctor was fine while I was doing ok on the Betnovate but when it returned gave me another prescription for it. Said use it twice a day for a week then slowly taper it off!! and to find what triggers it. I don't fancy this for the rest of my life. Will put up with this for now but after Christmas will have to think where to now. To be honest i don't think they've got a clue. I read of one case where after lots of treatments the person was prescribed tacrolimus cream and it completely cured it. I asked the doc and she oh sorry we can't prescribe that!! Anyhow we'll see what happens. Take car

1. I use Betamethasone, which i think is same as Betnovate...
2. I also use tacrolimus (ointment)...amazing.
3. Both the beta and the tac will likely be with me for life, even though my symptoms continue to dissipate. Most days, I have no symptoms.
4. the problem with not doing this for the rest of your life is that you open yourself up to the risk of cancer. Is it really worth it? I have suggested before that there is a video, part of a presentation to a medical conference that explains, in simple layman's terms, the "why" of this. While I can't post links if you search on " healthed gayle fischer optimising management of lichen sclerosus" you should find the video on line. Watch the first 13 minutes or so.

I've just watched the video. Must admit it's very informative. I haven't had a biopsy. It was never mentioned. Thanks for that information. It was very interesting.

If you read SnappyCat message to me she mentions a video to watch. I've just watched it and it's really good. Explains a lot. Hope this helps.

HI Jill,

Yes, just read it. Will watch the video. I have printed out 13 medical journal articles and am reviewing them now. I know the autoimmunity is one theory that no one has proven and also lyme infection (Borrelia) is another. If it is not autoimmunity then why would the basement membrane ( a layer of skin beneath the top layer) have no veins and capillaries? That's one reason the skin is white, it has pallor because there's little to no blood supply. The LS vulvar skin also is infiltrated with lymphocytes (white cells) and they should not be there. My question to drs is why are these lymphocytes there? None have answered. I suppose you have seen here the lady here , Nailah, who switched toilet paper and ate garlic and cured herself. Easy enough to do I guess, if you can handle chewing raw garlic and the resultant indigestion. Worth a try. How long would you have to eat it?

We are all very frustrated. I have a book titled, LS: Beating the Disease, by Ginny Chandhoa. Very interesting book. was $25 on Thrift books. She went totally organic which most of us cannot do. Time for some liquor......