New to LS - start here

How long have you had a diagnosis of LS? June 2016

Do you suspect that you have had this for much longer? About 3 years

Is it currently under control? No 

When did the irritation start? 23 years ago - itching on and off - long remission with renewed itching last 3 years and cystitis

Has the area always been irritable? No, periodically and phases of remission

Are you suffering a flare at the moment? Yes since April 2016

If so, can you attribute the cause to anything specific?medication, high stress levels and sugar

Do you suspect that other members of your family may have had/have LS? No

Do you have any other skin conditions along with the LS?  Yes - recent patches of excema on face and on medication for acne

Describe your skin type: Pale

Do you suffer from an autoimmune disorder e.g. No - had glandular fever, have CFS and Fibromyalgia 

Have you been tested for high cholesterol? Yes and it's high

Do you suffer from high blood pressure? Yes and on medication for it plus beta blocker

Medication for high BP - Yes

Statins? no - I was but I couldn't tolerate it and severe muscle pain and twitching so was taken off it

Diet and exercise? Poor if I'm honest - with disc problems, and fibromyalgia, exercise is hard for me and also my diet isn't great - suffer side effects from meds that give me insatiable cravings and increase appetite

Do you suffer from low blood pressure? No

If so are you being treated for this? No

Do you suffer from anxiety? Yes

Have you taken steps to reduce your stress? Impossible I find as full-time carer to two kids with special needs

If so what have you done? Not much

Do you have a flare-up of LS if something is causing you stress? I've only recently been diagnosed so if I reflect with hindsight then I would probably say yes for sure

Have you had surgery related to LS? No

Biopsy: No - pending

Have you experienced other surgery? C-sections

Episiotomy: No

Please list any of the prescribed topical creams you use currently

Eumovate ointment (Clobetasol), Tacrolimus 0.05%,

Barrier creams: Emulsifying Ointment

Alternative treatments: No

What sort of products do you avoid when cleaning the area? Everything - just use plain water on a clean cotton pad daily and rinse first thing in the shower down below with plain water before I proceed to wash other parts of my body and my hair

When do you wash? I wipe in the morning with cotton pad and water and again at night before I apply steroid cream - I always dry the area gently too

How do you dry yourself? Tissue or pat dry with flannel cloth

Do you wash in hot or cold water? Hot in shower but cold water on cotton pad for daily cleaning

Do you dread having a poo? Sometimes as I have irritable bowel.. What happens? straining and constipation or explosive episodes where my bowel comes away runny and liquidy

Does pee sting you? Yes - like cystitis when I'm flaring - mild sting otherwise

What can you no longer wear? Jeans or anything with a seam as it hits off my urethra area and hurts like hell

What do you now wear? I still wear tight leggings and as I have a distended abdomen, I have to wear synthetic underwear a lot of the time in order for them not to ride down - I know I shouldn't - but recently found some nice cotton ones so have made the switch only recently

Do any foods seem to make the LS worse? I'm assuming sugar - maybe nightshade as it irritates my irritable bowel

Is this discomfort on already damaged skin? Yes, i have scarring on clitoris and urethra area and raw red patches like ire or mild blistering and little bumps on inside of my inner labia. Slight tightening on outer vaginal entrance which burns briefly during intercourse on entry. Also skin on vulva red in parts and pale on inside of Labia Majora

I am unsure if this is the right way to make a post. I am new to this site and also new to LS and have a few questions, if I am in the right place?

Hi I am mum to a 14 yearold girl who was diagnosed with LS at the age 8. It took years to get the diagnosis and I was relieved that finally something could be done for her. She uses Dermovate and emulsifing cream regularly and that has been ok with the occasional flare up until recently where the pain has become unbearable for her. Her consultant has now diagnosed Vulvodynia and prescribed lidocine cream. This burns when applied and gives her about an hours relief and she can only use it twice a day. I am at my wits end as she now can't attaned school due to the constant pain. I don't know how else to help her. Please do you have any suggestions? Thanks

Hi all, I cannot express how thankful I am to have found this website after years of frustration. For the past 5 years I have had repeated flare ups down below and  been told by the GPs it was thrush, each time they swabbed me and checked for chlamydia, checked my urine for diabetes and told me it was probably down to stess.  They kept prescribing canneston hydrocortisone to the point where they just put it on a repeat prescription as I think they got sick of me coming back every few weeks saying the soreness and itching was back!  I have moved a few times and each GP said the same despite me saying it was external never internal, there was never any discharge and that it seemed to flare up when my eczema did.  One GP told me it could be worms, another drew a picture of a womans legs and patronisingly told me about only wearing cotton underwear because that might be why I kept getting thrush!  About a year ago I went back with another flare up and there happended to be a locum Doctor who was the first to actually pull up all my smear tests and inform me that they had all proved that I had in fact never had thrush!! 

Finally after pushing and pushing I got a referral to a gynachologist who on my first visit said he couldn't see a problem and referred me for a vulvoscopy. Yesterday for the first time the nurse listened to all my symptoms and what I actually had to say on the matter and I became rather tearful as I had enough of being prodded and poked. She had a look and straight away diagnosed LS and gave me all the information and creams I should need and is sending me for blood tests for thyroid function.  I have been searching for causes/conditions for years and never seen LS appear.  Now that I actually have a name for it and have googled it I have found so much information and although it's early days in treatment and fingers crossed I can manage it I cannot express how grateful I am to not be alone anymore!

Hi is it safe to go swimming with lichens ?

Hi, I'm an 18yo female who thinks she has lichen sclerosus or lichen planus.

I've been through the stress and depression but finally finding an active thread is making me feel slightly better!

Anyway here's my story in the shortest form.

For what now has been about 6 months I have been having problems with my lady area, it all started when I got a UTI and was put on antibiotics which then led to thrush, it itched like crazy and I had gotten some sores down there, worried I went straight to my doctor who prescribed me canesten cream which cleared everything like magic.

I'll still had a uti but no painful symptoms just weird urine, the hospital prescribed me more antibiotics which again gave me more thrush, around this time I had already had one doctor look down below, she was one of the first people I went to and she said it was thrush & irritation, not nothing serious to worry about.

After this everything was fine for about a week until I came back from my holiday to have a look which I did, down below on my inner lips were two symmetrical white lines which day by day moved to the outer edge of my inner lips making it thick at the edge but the lips themselves thin and wrinkly, I was having sharp pains and an itch, with it swelling up ever so slightly now and then, I was so worried.

I spoke to my mother who then said she gets the same thing because she has a skin condition called lichen scleroses (I was unaware till this point) and so does my grandmother.

When she said this I immediately used some of her steroid ointment which actually helps, the lips did not feel as thin and actually felt quite normal although the skin texture was still slightly wrinkly.

My mums advise was to go to the sexual health clinic and have them take swabs to narrow down the possibilities of what it could be, everything came back normal and the lady also had a look and said everything looks perfectly fine but I'm still not convinced.

Other parts of my body are also what I think effected by this, my tongue has been going through problems nearly as long as my vagina has, it has white lines that would move around, the top of my mouth & bits of my tongue felt burnt and then I had a brown itchy patch come up in my forearm near the crease come up, and I had a dry patch on my college bone which was there for a few weeks.

After this I had gone to the doctors again, different lady this time, she put me on anti fungal treatment again and said ls is usually in Middle Aged women (although my mother was diagnosed at 18)

everything feeling the same I went back to another doctor, told her about my skin (mentioned my family history of this condition) and tongue and lady bits, she didn't take much notice and just did blood test for me, everything came back normal, even my white blood cell count, which means I have no infection.

Since when I first noticed a difference I stopped washing with shower gels on my init intimate area and decided to try after months of not, after this I was very itchy and started to get a yellow sticky discharge (sorry I know it's gross)

Also recently on my back I had what felt like a itchy mosquito bite come up on my back, I took a look and it was a red raised patch, my mother and grandmother also get this, and funnily enough mine and my mums was in the same place. Me and my mum have been having similar problems one being that both of our hands begin to flake as if they are dry and little bumps appear on our hands although.

Again I made another doctors appointment and told her about my distress and similarities in symptoms that I've been having with my mum, she didn't take a look at anything, shrugged off the idea of ls & lo and said maybe my skins just irritated and gave me a soap substitute and E45 cream.

This whole situation has left me feeling out of myself and very depressed as I don't know what is wrong especially with it being such an intimate area.

I also have vitiligo which I think increases my chance of ls or lo but don't quote me on it.

Sorry for such a long paragraph I am just beyond desperate to know of anyone is experiencing what I am??

Adding to my previous post, I have also now noticed pearly white dots that itch now and there, does anyone else experience these?

I have been to my Gynae appointment and she dx vulvodynia and vulvar vestibulitis - she said it's not LS (I'm not yet convinced I must say).  I was taken into hospital and received tripple injection - steroid pain injection to relieve the burning during intercourse and for the dermatitis symptoms I was put on a cortisoid steroid cream and alos Amitriptyline medication with a self care cleansing programme using emolient ointment to gently cleanse and wash daily.  I still have white blanket over labia minora - looks like Lichens Planus to me or LS - and I've had no relief and had to increase strength of steroid cream on advice of my GP. I don't think any biopsy was taken, as gynae was confident it wasn't LS/LP.  I feel disappointed that I'm still suffering and I don't have a review appointment until December.  That's my latest update ladies.

Hello everyone. Newly diagnosed, posted a separate question in the forum as I don't have any white patches or visible signs. So I am a bit confused. I trust my gyno but I will be grilling her when I see her again in 6 weeks! I am in my early 20s and compared to many stories on here I am feeling thankful that mine is relatively mild - sharp scratching sensations every now and again espeically when wearing tight jeans and walking, after exercise, during high stress or on contact with water. No itching at night for instance. An overhaul of my diet (after figuring out I had IBS) helped immensley before I even got a diganosis, so I am trying to stick to that. 

But I've had a flare up recently, I think after a bad illness and unprecedented stress from personal life it just succumbed! Now battling to get it better again but feeling a little defeated. No-one in my personal life to talk to about this and my health anxiety is sky-high! But this forum is soothing (as long as I stay away from horror stories) and look forward to chatting with people more.