LICHEN SCLEROSIS - GOOD NEWS STORIES

Hi, I have only just been diagnosed also so I too would like to hear some good news.

I scared myself to death looking the condition up on the internet.

Hi l have LS this is how l manage it l use 3 drops of tea tree oil pure in a small steam pudding pot with warm water and then apply Active Manuka Honey 10+ 2 0r 3 times a day l fine this amazing hope this might be something to try

Hi everyone. I wanted to post in here as I think it's a lovely idea to put positive stories up here too. 

My LS is by no means 'gone' (as much as this thing can 'go' but my recent flare up that had been driving me crazy for about two months has suddenly upped and gone so I am feeling really positive. 

I was diagnosed a few months ago , I'm in my early 20s and had had a year of being treated for thrush, BV, thrush, thrush and thrush again. Nothing helped. I moved adn was with a new GP who said maybe dermatitis. Then when that didn't get better she immediately got me a referall to a gyno and admitted that GPs are great at the 'basic' stuff (like thrush) but anything beyond that is much better suited to a consultant. I saw the consultant and she wasn't too sure about my diagnoses but when I told her of childhood asthma and ezcema with adult flare ups, she said things became much clearer. I think I am lucky in that mine is pretty mild - though it doesn't feel like that when you are thinking about your vagina nonstop because it is sore/painful/annoying you!!

I was given dermovate which I took when I had a flare up, Dermol to bathe in, and all was good. 

My recent flare up happened after prolonged periods in a swimming pool (amazing holiday, not so amazing reaction to chlorine) sudden stress in my personal and professional life and then getting a hideous cold. All of this impacted me and got me feeling down, which then fed the cycle, as I think we all know this is very connected to stress. Up until two weeks ago I was tempted to ring for an emergency appointment with the gyno.

Then...it changed. I had a relaxing holiday (no pools!) where I had time for an emollient bath every day. I chilled out. When I got back I got into habit of putting coconut oil on every night before sleep and dermol lotion on every morning whilst getting dressed. I also use vaseline before I have a shower as I find the water where I live affects me and also it protects from stray shampoo etc. And because of all this I haven't touched my steroid cream in 2 weeks and I can go a whole day without thinking about it! That is huge for me. And this sounds so silly but I looked down there today and it looked normal!! Not red and sore at all. It hasn't looked calm and not-angry in about a year! 

I am sure I will get flare ups in future but I feel like I've got it to a good place. So from now on it should hopefully be management and learning to minimise length of flare ups, and of course to avoid flare ups when possible. 

So that's my litle bit of positivity! Just keep asking for a doctor's help and trawl this site for tips and tricks (coconut oil, coconut oil, coconut oil) - all of the ones I mention above came from this site! 

I've been living with LS for at least 20 years, diagnosed for the last 10 and at one point about 8 years ago had fusing that required minor surgery to reopen.  However, after many years, I finally found a regular routine that not only keeps my symptoms at bay, but has also completely restored the normal appearance and elasticity of the skin.  At my last gyno appointment, the doctor said there were no longer any visible sign of LS.  

My routine is pretty simple but really needs consistency to work and avoid flare-ups.  I use clobetasol ointment 3 nights/week (it was more often at first, but gradually decreased the need) after a warm baking soda bath.  Every morning after my shower, I rub pure emu oil into the skin really well, and do so a couple of times throughout the day too if convenient--like if I use the bathroom I'll rinse myself off with a little warm water and apply more oil.  If I'm out of the house all day I don't worry about it but will usually apply right away when I do get home.  On the nights when I'm not using clobetasol, I apply emu oil liberally right before bed, sometimes taking a baking soda bath beforehand if I feel like it, but not every night.  

Those combined with simple things like wearing underwear that is 100% cotton, no underwear at night, using a completely perfume-free soap (I use Cetaphil per my dermatologist) but NOT using soap on your vulva (warm water is all you really need), and not using panty liners unless absolutely necessary (they are the most irritating thing in the world if you have LS), have made all the difference in the world.  Oh, and emu oil as a personal lubricant for sex.  Any other lubricants are irritating to me, but emu oil works great and I can now have sex without pain.  

It's really important not to stop using the clobetasol when symptoms ease up.  You can gradually decrease the frequency, but stop using it altogether and you will end up with the worst flare-up of your life.  Over the last decade I've experienced this a couple of times and will never make that mistake again!  

Been diagnosed LS since 2010. I had to finally give up on gynos and visit a dermatologist to get a different point of view...because really the problem is connected to thyroid/immune/ and it more recognized as a skin condition...versus what gynecological. The steroid creams stopped working and you cannot continue to use them because they end up doing more harm long-term.  The dermatologist first instinct was to use PROTOPIC..and its not steroid.....SO GLAD I saw a dermatologist. I think they are more open to other options becuase the have to deal with other skin issues. It definitley has changed my life..I still have an occaisonal..flare up..but never as bad as it was and now maybe once every 3-4 months...if THAT.  But it has helped a lot!!!  I can use it and adjust the amount. I only have to apply once a week now after a shower...sometimes twice...but I have gone a few weeks without it.  I can tell when the LS starts to kick in..and reapply twice a week. 

RELATED CONDITIONS: I also have hashimotos hypothyroidism which is my immune system is attacking my thyroid. I also have fibromyalgia...so it feels like I was in a car accident the day before...most days...Sometimes I have THAT ONE day a month where I feel like I'm in my 20s again. Those are great!  I also had high insulin...but went back for more testing..not diabetic.  Also I noticed whenever I had a flu or was sick...ALL MY SYMPTOMS disappeared. I believe most of my problems are autoimmune releated.  Stay away from sugar..use stevia in place of. Stay away from too much breads pasta or grains.  I have been able to manage fibro pain without pain medication for a few years now. I do have Lyrica but only take 50mg at night IF NEEDED in case I feel a really bad bad night coming on. Sometimes a Red Eye coffee will bring me back to life and remove pain up to 30-40%. So ive been able to manage pain also with strong coffee!! ALSO SLEEP is MOST IMPORTANT. Let yourself sleep in as much as you want when you can. I have fantastic days after I let my body sleep as much as it wants.

Hello, I have had LS since circa 2009 - and known this since 2011. Over a period of several years I was referred to several consultants who didn't really understand, have knowledge- couldn't help. I've not had intercourse with my husband since 2009. However, the good news I have is that recently I had surgery - it's worth it. I'm using dilators and can use the first four easily. I'm not cured however I'm writing this to say - don't give up. The last consultant I saw - who performed the surgery is wonderful. She has been very understanding and has experience of helping other women. So I think there are positives!To anyone reading this persevere - ask your doctor to see a specialist - I saw a plastic surgeon - through the NHS in the UK - he worked with the gynaecologist I referred to above. The surgery I had was not complex, I went home later that day. I had stitches, it was not too painful. Don't give up!!!