Read that colour changes (white patches) may not go away; How to tell if LS is in remission?

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!!

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.

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.

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

Thank you!

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!

(My white area is not small bumps, but rather a white patch if that makes a difference?)

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.