Lichen sclerosus -anyone ?

[Popie123]

Hi

I have suffered from what I have been told for the last 6 years by specialists at the sexual health clinic was vulva Dermatitis/excema which for the most part has been under control however I use steroids when it flares up

I have a particular part of skin inside my inner labia in the crease on my right side which is often quite itchy and that's where I was told to apply the steroid cream.. this has been looked at over and over again by consultants for the last 6 years and I have always been told it is dermatitis, I also get it on my bikini line

i have recently seen a private sexual health specialist ( not a derm or a gynae) and explained my issues

He did a very thorough exam and was looking for quite some time with his torch and magnify ( mortifying) and he seemed confused and said he suspects possible LS but he isn't sure and recommends I see a vulva dermatology specialist

he suspects this because my right inner labia is smaller than my left and suggested this could be fusion although I feel it has always looked this way, he also said something about my clitoral hood not being as defined or something but said I have no scarring etc

He did say as he has not seen me before he doesn't know it this is just my normal anatomy

I have none of the typical symptoms of LS, I don't have white patches , thickening of the skin , pain during sex etc just itching in this one particular place on and off for years and a smaller inner labia than the other side

I used to get the itching a lot and I actually rarely even get this anymore

I am terrified of the link between LS and cancer I am 35 from what I have read this rarely develops in women under 60 and before menopause. From reading Google you'd think if you have LS you are almost certain to develop vulval cancer

can anyone shed any light ? Has anyone been misdiagnosed ? Or has any experience of LS ?

I'm 62 and I was diagnosed in my 30s. You need to keep using the steroids, I find the ointment better than the cream.
I rarely get flare ups these days but my anatomy has changed dramatically due to fusing.
Find a doctor you trust, who understands the condition.

@StiggyZardust thanks for your reply my issue is I actually don't know if I have this or not as I have been told all along it was dermatitis

what were your symptoms and were you diagnosed via a biopsy ?

Extreme itching and white patches. I didn't have a biopsy, symptoms were too obvious.

I am just confused about all of this and I have health anxiety which isn't helping

after the private consultant thought I had LS I went to see the NHS consultant at the GUM clinic who I have been seeing for the last 6 years for what I was told was dermatitis

he examined me and said that my anatomy was normal and I certainly did not have any absorption or fusion and that he does not belive I have LS.. he said whilst it can happen it does not happen often before menopause. He said my labia and clitorous was normal

however I have been self examining due to my anxiety and I have noticed on the edge of my inner labia I have a dark mark and now I am terrified of cancer

not sure why I am posting here but I am in a complete mess and have been all weekend

Request a biopsy. I didn't have white patches nor itching just redness and constant pain for 2 years and I suspected I had it. I eventually had the biopsy and I do have it. Unfortunately in my case it doesn't seem that the LS is the cause of the pain and I have been re-referred to gynae. Note that if the biopsy shows you have it, you have it. But if it doesn't show it it doesn't mean you don't, it could also be dormant or they could have taken the sample from the wrong area.

The symptoms for LS and dermatitis or eczema are pretty similar, I was told mine was likely eczema before I had the biopsy.

It is not something only found in women over 60 (I was 50 when diagnosed). There is an excellent facebook group for it and there are women of all ages there. But for most, perimenopause or menopause is when it first appears.

I was diagnosed by biopsy. Ask for one?
Even after it my gp didn't think it was LS but he had the gynae report so he accepted it.

I will be asking for a biopsy but is pain something that is definitely associated with LS? As I don't have any pain, I have itchiness on and off in the same area but I have no pain and no pain during sex etc

I have now noticed a slight darkened brown patch on the edge of my labia minoria so I am extremely worried this is cancer

I don't think LS itself causes pain, but it can cause the skin to split and tear which does cause pain. The pain associated with having sex is (I think - I cannot have sex at the moment) either tearing or because the LS has caused the vaginal opening to narrow or both.

Wrt to the dark mark, have you noticed this since all your appointments or was it there when you were examined? If you noticed it afterwards it's probably best to make a GP appointment or go back to the GUM clinic. If they suspect cancer they can refer you under the 2 week pathway (except I think it's not called that any more).

@terceira I don't have any vaginal narrowing or any tears etc I honestly am surprised he's even suggested I have this and I am even more confused as the doctor I saw after him does not think it's LS

the dark mark I noticed yesterday, I was seen on Friday and again Saturday morning so it was must have been there

it isn't raised or anything is flat and kinda looks like maybe it's just my labia darkening possibly

I have extreme health anxiety and I am totally beside myself I have booked a private appointment with gynea and I am being seen tonight

Hi all

thought I would come back and update as this whole thing has sent me into quite a bad pace tbh but I suspect that is my health anxiety mainly

so I saw the gynae she did not think LS said brown edges of labia are normal , said she didn't see any issues with architecture and said was atrophic vaginitis .. but I wasn't very satisfied with her and tbh I should have been a vulval dermatologist .. so this is what I did last week

she said she feels I have mild, controlled , non progressive LS although she didn't explain why and I also thought that there was only one type of LS and there wasn't a non progressive type ? FYI this is someone who specialises in LS and runs a vulva clinic with the NHS although i went private

im just even more confused than I was before.. she also told me to not use the clob everyday as I was told at first but to use it twice a week and control my symptoms with emollient which really goes against what most things say online ?