Doctor experiences

doctor could just throw his hands in the air and say that's it!  You need

constant and reliable care.  You are right, that life is no fun with this

disease,, it limits and prohibits many activities.  However, don't give

up...there is some kind of help out there.  You must find a large

medical centre.  All of us on this cite have stories and much support for each other.

What I have realized through being ill myself, is that some doctors simply don't know what to do next, they are human, and therefore some are better than others at what they do, and it sounds to me like you need to get another doctor on board, another opinion, especially as  you have only had this disease for two years...it has progressed rapidly, I am not sure whether that is the norm, but it seems to be very aggressive.  

I am going to suggest you start looking for a Homeopathy doctor, not as an alternative, but I see no reason why you cannot try that in conjunction with a traditional doctor....but really I am thinking more for your oral lichen planus than anything else...

I just wanted to mention my view regarding Candida again, I strongly believe that when you have Candida  it opens the door for problems to arise within the lichen planus family.

 Signs of candida can often be..

dark rings under the eyes,

fatigue

swollen ankles

Brain fog

vaginal and oral thrush

itchy eyes

digestive issue, bloating, constipation, or even diarrhea

mood swings

urinary tract infections

allergies, often sensitive to strong perfumes, detergents

sugar cravings

skin rashes

Best to you.

Lichen Planus and Lichen Sclerosus are definately not fun and life altering for sure.  My dentist noticed my Lichen Planus a while ago and suggested to use a special toothpaste.  However, I opted for brushing my teeth with baking soda.  The next visit to the dentist told me that the Lichen Planus had simmered down.  That was encouraging.  They told me to keep doing what I was doing.  I also have stopped eating spicy food; going to the East Indian restaurant was torture. 

My Lichen Sclerosus turned vicious.  Labia closed fast till that last little pin hole through which the urine needed to flow.  Spending an easy half hour in the bathroom to empty my blatter.  Via family doctor, who contacted my gyna, I landed on the urgent list to have a dilating procedure done, from which I'm still recovering.  (When one stands with one's back against the wall, you run out of options. )  While all needed time and care to heal, I was thinking about possible infection.  So I used an old method my mother used to use - rinsing with a bit of baking soda in the warm water that I spray the area with after each bathroom visit.  

To my amazement, the LS started to go 'on retreat'.  At first just slowed down. And now, bit by bit fusing starts to 'melt', I have no other way to describe this.  Together with the spray bottle, I also take a warm bath with one third of a cup of baking soda added.  The skin diseases on hands and feet also simmer down.  Not gone, but at least it does not get any worse.  

Now - cleaning the mouth and teeth with baking soda will lower the pH level in your mouth.  Something I learned just recently.  At present I'm still studying as to why this could be important for a person with these nasty skin diseases.  

In the meantime I hope that the above may help 'compare' with what you are trying to cope with.  Are you cutting out foods like sugar, caffeine, alcohol and also gluten free?  Doing this has somehow helped lighten the load for me.  Especially sugar seems to trigger the LS that always will be there, though in the background at present.  And I'm pampering the area with loads of coconut oil.  Stings a bit most times, but looks like it helps the skin.  

I would encourage you to see a good gynaecologist.  With the accent on GOOD!!!  They are around.  

It does appear that baking soda is instrumental in helping some people.  With that in mind I think I might try an experiment.   I'm thinking of mixing 1 tsp of BS with coconut oil and applying it before bed, I have a very small amount of fusing just on the top right hand side of my labia minora, which has fused into my labia majora.   

What are peoples thoughts on that, would it sting too much, or is it just a bad idea?

I had some fusing in my late thirties that let go once I resumed sex. The fusing I have now is definitely irreversible. There's no seam any more.

the labia minora has appeared.  It almost looks like the otherside is

starting to let go but I can be sure  yet  The clit. was the first thing to

disappear so it must be buried quite deep.  I don't know  if will ever

have it again. I  have stopped itching since everything fused. 

I itched for over years without a break.  It never went into

"remission" n

I also have been drinking lots of fluid - water, licorice tea.  Avoiding sugary drinks and carbonated drinks.  Have also been strict with the food intake.  No food, only drink after eight in the evening till the next morning, something I have experienced as good for the whole system.   Plus I take my rest and try to avoid stress, doing things I absolutely enjoy - like working in my studio, or working in the yard.   (After all, I have a good excuse - recovering from a hospital procedure) (ha)

Are you an artist, you mentioned a studio? (smile)

Katie

Guppy, my age is 64.  Have LS probably for much longer than it was diagnosed,  official diagnoses approximately a little over a year ago.  And as Morrell mentioned, a big part of the fusing happened almost overnight.  Very viscious form of LS.  

Meanwhile I have set aside the Emu oil for now.  In spite of the stinging of the coconut oil, I prefer it's effect.  Due to dilation process in the hospital, now approx two weeks ago, or is this the third week already,  I started to use those things that could possibly prevent infection.  Baking soda and coconut oil are the things I am using the most.  A tiny bit of clob for the maintenance at present, since LS is 'on retreat' at the moment.  

There is more I'm finding out, but cannot put that in words yet.  I certainly will express myself as best I can later when I understand it myself, so all can profit from the findings.  

I told my doctor today to tell all his LS patients about the baking soda and coconut oil, for starters.  If nothing else, it is feeling much better 'down there' with these ingredients.  

I also find that the dilation procedure that I'm having to keep doing myself now,is very benefitial.  

And my time in the studio, so good for the soul.  I love to paint and draw, so yes, I am an artist. 

I'm an artist too!.... and your right it is good for the soul!

Katie

Am I correct in thinking that whatever people are using, it has to be applied regularly throughout the day..When I was first diagnosed I never put anything on down there, so I have a feeling that this dryness contributed to the fusing..