LS in Perineum too much Steroid?

It could be you need to apply less frequently or use a lower potent steroid!

Hopefully someone with more steroid experience will reply with more help for you.

I'm no expert obviously but having listened to a lecture by leading expert on LS he kept emphasising that LS CAUSES skin THICKENING and that there is too much scaremongering about use of steroids by pharmacists and gp's. It does NOT apply when you have LS apparently. Use EXACTLY as prescribed , usually every day for a month, then every other for a month, then 3 times a week for a month followed by once or twice a week to maintain its usual. Remember to rub in for 90 seconds as only about 30/40%of the cream is absorbed in that area anyway and it has to penetrate to the deep layers of skin that are inflamed.

I'm exactly like you have had many tears in that area and Labia Minora have gone, clitoris and urethra are getting covered too. In the early stages i was a bit cavalier with not looking and the area with a mirror and seeing how bad it was before i stayed applying dailycream again. I only used to look when the itching would start up. I think i may have reduced damage if i had. I won't make that mistake again. I check every day.

I don't know if you wash after you have had a wee but i found just diluting or washing away the urine with water on some toilet paper has helped my perinium area. LS sufferers tend to be super sensitive to their own urine.

Hope this helps Jess. You are not alone, so many good people here to help all they can. I'm new to this site too and I've learned loads and had great support.

I have had LS of amongst other areas, anus and vulva, for nearly 2 years and I think I have had really good treatment and advice from my gynaecologist as I am controlling this condition really well (at the moment!).  Ignore all the concerns about skin thinning as doctors disagree about this in any event.  When first diagnosed I applied the ointment twice a day for several weeks until the itch receded.  I now apply it once a day, twice a week to control LS.  I have been told to continue to do this even if I am not having any symptoms.  From time to time a have a small flare-up but, after applying the ointment for a day or 2, I'm fine.  The name lichen sclerosus/sclerosis comes from the shiny white lichen-like patches which the condition leaves - this is beautifully illustrated by the patches on my back which look just like lichen on trees, like silvery-white paper.  It has nothing to do with fungus and the white patches [u]won't[/u] disappear.  The red patches are new inflammations.  I have 3-monthly check ups with the gynae to make sure there is nothing sinister happening.  My gynae is very clear that I must keep using the clobetasol to prevent major flare-ups and that I must use my own judgement as to when to increase and then decrease application.  As I said, it is working well for me.

Also, I am on a very weak steroid. My Gyno said its 50x weaker than what many are on. . I have worried about that, hoping its strong enough to deal with the problem adequately but he's happy with my response to it. I've had it for many years (LS) I believe. . I have no fusing but I did have white patch that disappeared with steroid and coconut oil. I have burning at new area sometimes that I simply don't understand. as a teenager I had itching in anal area and as part of my adulthood had insane itching on labia majora and some on clitoral hood.

I did have skin thickening that went down rapidly after steroid. I personally find the steroid has brought me a lot of relief from itching.

I worry that I had a big flareup in this perimenopausal period of my life. Will it get worse after I'm in menopause? As my Gyno said in response to that question ,"maybe..maybe not". Well, I suppose his answer was a wise one at least but again the impression I have... A whole lot more questions than answers with this disease and they really don't know much about this either.

I rarely hear women say they have LS on labia majora. I wonder.. Is that unusual?

I've been taking a lot of long lake swims this summer and my white perineum is sort of textured like it's warped, like your fingertips get after a long soak. But I haven't had an actual tear in months. I've spent most of forty years with a bleeding tear in my perineum. Since I was diagnosed two years ago, I've used Dermovate (clobetasol) for 18 months and then tacrolimus instead for six months. I wouldn't say one worked better than the other, but tacrolimus burns and it's more expensive. I plan on asking my gynaecologist about alternating between the two. Somebody on here mentioned that once.

I agree with Norma that we have to try what we can to get to the bottom of the reason for the inflammation. After being active on this forum for two solid years I certainly see a pattern of stress (anxiety) being the most common factor. For me sugar is the second. Since I stopped having sex, the vicious cycle of yeast and LS flares has stopped. No sex, no yeast infections, period.