I read that sometimes colour changes may not be reversible. In that case, how do you know if the LS is in remission and the colour change is just permanent?
The general guidelines seem to include a tapering of clobetasol to either as needed or a less frequent application but I'm confused as to how to tell whether LS is in remission if the discolouration can be present even after symptoms resolve.
I am new to this stuff, and it seems that the amount of information is often conflicting! Thanks!
Hi Sparker,
I'm 63 and at my last appointment my gynae said that this faded coloring is normal for my age. The time before she told me that the hard yellowish lumps just inside my vagina are also normal for my age. So, bottom line – if you're not inflamed with raw, red, sore, itchy or swollen areas and you don't have any tears, it's good.
Thanks, Morell. I'm in my 30s so I don't think the white area is age-related. The thing is, so far I have never had red, sore, or swollen areas (I am very lucky to say; though it could be just that I caught it very early on). The white area was mildly itchy on occasion at one point, but that was it. Weirdly some of the white area went away after I had my biopsy. So now I still have some whiteness but I can't figure out how to determine whether it's active LS or not!
Hi,
Very interesting as I've wondered the same thing. I have white patches which don't itch and what appears to be normal skin areas that do itch. From a biopsy I was diagnosed with LS on the non white patch and hyper keratosis on the White patch.
I've been using Betnovate now for 1 month and the itch has reduced (plus aloe Vera essence) but the white patches have remained. I don't know if the White will go away or not so I've been using the cream daily. Not sure if I should reduce or not.
I'm 44 so I wouldn't have thought age was a factor for me just yet... But maybe. Interesting that you had the little white spots as so did I. The dermatologist thought it was warts caused by the Dermovate I used first and froze one of them off. It took about 3 weeks for the pain from that little spot to subside after the freeze. I didn't think it was a wart from google images. I do wonder what it is.
Samantha
I should add to my other post to you - I believe I caught this very early on. I was asymptomatic except for a very occasional slight itch that wasn't even enough for me to look at the area and often didn't even need to be scratched. One day I happened to be looking down and noticed part of the white patch and that was what prompted me to investigate further. Otherwise I likely wouldn't have discovered it until much later, possibly years later depending on the progression. As it is I don't really know how long the white patch was there. But yeah, I am confused as to how to tell whether LS is active or not, since my understanding is that white patches can be active LS but still asymptomatic. This stuff is so confusing!
What are your doctors thoughts? I'd continue using the ointment since it's only been a month. This condition is very confusing and the fact that many doctors don't know much about it and/or hold different opinions on resolving it makes it harder. I'm glad I found this forum!!
I started using Manuka honey 15+ at night with a liner because it is messy and every time you use the rest room spray witch hazel dab dry then use the purest aloe you can find I have been doing this for two weeks now and my skin is almost all pink again and it had been white for at least a year
Thank you! Do you use a particular witch hazel? I'll have to read up and buy Manuka honey. How do you use it?
No I just looked for what I could get at my health food store I found small hand sanitizer spray bottles that I emitted and put the witch hazel in one and the aloe Vera gel in the other that way I could be discrete At work I spray the witch hazel then dab dry then put the aloe on to keep moist
The Manuka honey I use at night with a pantie liner it is a little messy I try to put a lot on because it melts and I try to sleep in my stomach so it falls to the front because the is my troubled area
Well, it's very good that you've caught it early and the main thing is you're looking lots. Keep using the Dermovate twice a week on the minimum area you think is affected. If in doubt, go back to the gynae. If I had my life to live over, I would never have sex when I'm sore or torn. I got into major stress management (mindfulness) techniques in my late forties. I believe that made a huge difference.
Hi Sparker, Lichen Planus is often white spots rather than areas. They tend to be small shiny and parchment paper looking at first. I have some on my wrist and not very visable unless I scratch (I try not to) Maybe you have this problem as well. It is worth asking the question. LP can affect all parts of the body including inside the mouth.
Thanks, Chrisy! So you think maybe I have LP vs LS? I essentially started with a white patch near my clitoris, on the skin to the side and slightly above (sorry if that is TMI). It wasn't tiny but it wasn't incredibly large either. I will have to research LP more. I did have a biopsy done because my gynae thought it could be LS but it didn't look definitively like LS and wasn't diagnosable based on visual examination alone. But I wasn't sure if that was because it was early on (it was fairly asymptomatic but I caught it through random visual inspection). Thanks, Chrisy. This stuff is so confusing, plus because of the area it affects it is harder to talk about with people I know IRL!
Thank you!
(My white area is not small bumps, but rather a white patch if that makes a difference?)
Thank you, Morell! I will keep using the Dermovate. I do have serious stress management issues which is something I am working on. I'm so glad I found this forum because this stuff is so confusing / difficult and it's not really something that's easy to talk to people I know about.
LS biopsies are notoriously difficult if you're asymptomatic. But you definitely want to rule out LP. Glad you're managing stress. That's Job One.
Yeah, I'm seeing my gynae again in a couple weeks but I think my biopsy was not definitive, as my gynae thought it might not be. He said that it may not show anything and we may have to re-biopsy later on. I guess when you're asymptomatic and/or in early stages the histological characteristics may not be as pronounced in the biopsy?? Is this the case with LP too? The gynae didn't seem to think LP was a potential diagnosis based on my clinical signs.
I am so terrible with stress management and have been going through an incredibly stressful time. I wonder if that could be what has triggered this.
Sorry for delay in getting back to you. Yes stress is a definate cause of flare ups for lots of us. You will have to wait and see what develops by the sound of it. It is a problem when all you can do is wait and see. I hope you continue to treat the area and maybe things will calm down. There are some thoughts that the earlier things are caught the more chance we have of things calming down completely, good luck.
Good question sparker. I'm in my 20s so I don't think the white area is age related in my case as Morrell mentioned.
I was diagnosed in January and my white patches are still there. Sometimes it looks like they are fading and other times they look the same. I have read that they can take a long time to fade. A long time I'm assuming years? I also read that they may not go away. That disturbs me a little knowing that it isn't reversible.
I agree though that there is a lot of conflicting information!
Hi Sparker,
So I have noticed 2-3 little white bumps and then later noticed a white patch had formed on my labia minora and itched at times. I was seen by 3 different doctors till they felt to do a biopsy, which took a year and results were LS. I prescribed Clobetasol Propionate Ointment. That actually made the white patch and bumps clear up. LS is pretty much dry skin, just in the wrong area of the body if in the vaginal area. It appears to be connected with auto-immune diseases, hormonal changes, stress, ect... We all have came to the right solutions just no cure yet or definate cause. I have eczema and dry skin naturally plus runs in the family. So I believe it is also tied in with our families. but when you look at all the factors the major one I see is hormonal because everything ties in with them. Gotta love how our bodies work. Well if anyone wants to chat about this please feel free to contact me.