New to LS and panicking!

And sorry for my english, I am from Finland

I hope that soon a clearer diagnoses will come for you.  It's very unpleasant to live in the un-known. 

Do you have baking soda/bicarbonate soda in Finland?  If so - to sooth all down there, it is very helpful to go sit in a baking soda bath (1/3 of a cup in the bath)  for as long as the water is comfortable. Also - rinse your bottom after every bathroom visit with warm water in a spray bottle in which three pinches of baking soda. For me, and I now know also for others, this is very helpful.   

Next item on the list is for sure your diet.  Start with cutting out all sugar.  Then gluten and dairy.  Caffeine might also be an irritant.  So is alcohol.  

And then rest, relax and do some nice things for self.  And when you have the energy go over the various discussions on this forum.  There is some good info there.

Wishing you WELL.

Hi Ter-ry, lack of information is so hard to deal with, I know. Try and look at the Dr Goldstein's lecture the link is at the New to LS page. It takes an hour so make time and a nice comforting drink. Have a note book to hand and take notes....there is a lot of information given. I took screen shots of the slides to look at properly in my own time. There is a huge amount of advice and good will kindness and support on this site do look at older topics they are all relevant 

I took a print out of the slides and a link to the Dr G's lecture to my doctor and their nurses for their  information.

Try NOT to stress out most of us will say that stress is the worst thing for LS next high sugar levels in the diet. Next is friction, so try and keep clothing loose and refrain from penetrative sex for the time being

keep urine and all body fluids off the mucous membrane on your vulva

you obviously have seen for yourself what is happening. Take a photograph with a camera NOT your phone or tablet...they can be hacked...it is useful to keep a record.

you asked how long and whether you will get fusing. Sadly no one can predict the future changes. We are all so different and different changes happen to different people at different rates. It is an autoimmune condition caused it is thought by stress, changes in the hormone levels and  with a genetic component. Take care do try and manage your stress have fun and laughter, relax take exercise; some think that by fasting for a couple of days a week could help kick start the immune system back to more normal levels, nothing is proven tho

good luck

Sue

Hi Terry, with the correct cream (you need a strong topical steroid called Clobetasol) the whiteness you describe should disappear quickly, but it is important to apply it thinly, usually after a bath when your skin is softer and more receptive, and only use a small pea size, and make sure you rub it in well, using a small hand mirror to make sure you are putting the cream in exactly the right spot, not everywhere! Then after an hour or so you can apply coconut oil, Vaseline, Emu oil etc whatever works for you.  When I experienced the same as yourself I thinly applied the cream first thing in the morning and then before bed, I continued with this treatment for a week, and then applied it once a day for another week, and the whiteness cleared up really quite quickly.  It is important at this early stage to continue with maintenance, and for that I would suggest applying the cream just twice a week.

With regards to doctors I am sorry to say that some are clueless with regards to this condition, but that should not be a problem because you must do your own research and become informed yourself and then you can explain to your doctor what it is you need...

Some people may suggest you should have a biopsy, and some doctors will want to do that.   I am of the opinion that it is not necessary, (this is only my opinion) because I believe it can actually cause more stress and possible problems in the long run, and if the doctors would only take the time to do a little bit of research on this condition they would find that the symptoms of Lichen Schlerosus are actually pretty straight forward, and easy enough to diagnose without a biopsy.

As already mentioned it is important to avoid sweet stuff for a while especially whilst your in this flare, and then afterwards you will need to be very careful with what you eat,  and remember not everyone has LS really aggressively, some people have managed this condition for many years, but the key is to become informed  so that you have a good understanding of  what you are dealing with.

 

Thank you all SO much for your replies! Our local website is sadly pretty quiet. I think I am going to do as suggested: I will gather all the information I can get and take them to my next appointment and force the doctor to listen to me. I felt so abandoned and alone when she didn't say anything about my own suspicions, merely shrugged them off. Reading all the horror stories on the web have made me very scared but now I think I can calm down at least a bit. I have cut off all sugar and glutein from my diet and I hope that helps. The examination that doctor did irritated my vulva even more

Do you think I should try the yeast infection cream? It burned a lot and I was thinking that maybe it makes things worse?

Hi Terry,

Everyone here has covered most of what you need to know. Except the action of physical stress on already-flared-up vulva. Many young women insist on continuing with sexual intercourse even though it's painful. I've had LS for 45 years and I did it for decades.

There are several kinds or levels of LS. Mine may have been the least aggressive.

Of all the dietary things you can experiment with, the most widely agreed inflammatory food is sugar.

Okay,  Call me crazy but....I began with sores on my tongue and had them for two years. During those two years my dentist insisted I go to a specilist. I wouldn't. At the same time I had had some vulva issues..white steeks, itching, soreness.  Thought it was my soap. Used every thing under the sun. Then I got this patch on my breast.  Finally, I went to a specialist for my mouth and had a biopsy and they said it was an auto immune thing. Next I went to the gyno and found I had an auto immune called LS.  Next I went to a dermatologist for the spot on my breast and I said "wait, is it an auto immune thing?'  She said yes and gave me so steroid.  Meanwhile, I went home and thought this all must be related and what have I done for 2 years that I didn't do before that would cause this, even though they say there is no cure. BINGO! You may find this really strange, but it is the cause of my LS.  I have an alergy to tree nuts.  I was using Almond milk in my cereal every morning and making a shake every day.  I decided to not use almond milk and everything went away in 3 weeks.  That was two years ago.  This week I stupidly wasn't feeling all that great and decided to have some Honey nut Cherrios.  Not thinking and again, I have a very bad case of LS. Just 2 bowls in 2 days.  Big blood blister...the works.  Who knew!

I don;t know if this will help you but I thought I should share this with you.  We me, I aquired an alergy after 63 years from tree nuts.  Possibly you might re examine what your diet has consisted of and use the process of illimination.  

Hope this helps.  If it should I would like to know.  Maybe we can help other with this.