Have any lichen sclerosis sufferers also got Frontal Fibrosing Alopecia?

Hello Hanny.  I am interested in your fusion disappearing.  Once skin has fused and becomes solid scar tissue, I'm afraid I cannot imagine how it could "unfuse" without surgery. That would involve cells dissolving which couldn't happen with just creams unless they were corrosive.

Hi Annabel,

It was an unexpected discovery after I had a dilation procedure done, because I was by then totally fused up.  That was October last year.  To try to avoid infection I started to rinse the bottom with warm water in which I put three pinches of baking soda/bicarbonate soda after every bathroom visit.  Debbed dry I covered the area with coconut oil.  At first I couldn't believe my eyes when it appeared that gradually the fusions were disappearing.  In addition to that I started to take baking soda baths, I added 1/3 of a cup (no more, or it won't be comfortable) to the bathwater and some tea tree oil drops as well.  Sat in there till the water became uncomfortable and kept doing this every other day.  It had a positive result on the skin and even my hair.  The skin disease on hands and feet also started to disappear.  

Then I went to my nature path to better understand why this was at all happening.  Both my nature path and GP explained about the acidity and the alkalinity.  After that I started to be more strict with my diet as well - as much as possible I follow an alkaline diet.  Which means: no gluten, no dairy, no sugar, no alcohol, no caffeine, be careful with soya.  

Today I live fairly comfortable with my LS.  Use only a little bit of Globetasol so now and then, or rather, when I feel it is needed.  LS will never go away, but now it has become liveable.  I can be intimide with my husband again, which was a totally unexpected bonus.  I keep dilating every morning.  Also use hormone replacements, Bi-Est.  And have supplements in the B vitamins and Omega 3.  

Hope this will help you on your way.

I would be very interested to know what treatment you were talking about.  I have both LS and FFA, very depressing, I was diagnosed with the LS at age 25, when not much was known about it.  The FFA started occuring in 2014, after some very depressing things happened in my life.  I thought it was due to that, but the specialist said it was the LS steroid treatment (testosterone) that they put me on for 30 years, that was causing my hair loss.  I just would like to be able to manage it without pain for once.  If you have helpful hints, I would so much appreciate it.

Hi Wendy

I have LS (confirmed with biopsy 2002) and have been totally devoid of pubic hair for about that long. Am also fused and unable to have intercourse for about 3 years . (So thankful for a loving hubby)

I used to use MSM intravaginally and it seemed to help but then my focus shifted to more serious health issues and that got forgotten. Need to get back to it.

But the good news is I am miraculously developing pubic hair again!!! Because of my other health issues I am always researching and looking for natural ways to help my body . I eat gluten free, also no dairy, soy and mainly vegetarian as well as take quite a number of supplements that I have found make a difference for my health. Recently a herbalist suggested that I take 1 tablespoon of chai seeds a day and also add 1 tbsp of liquid chlorophyll to a glass of water daily(filtered water of course). So I started that in January of this year and within a month happened to notice a significant changed- I no longer looked like a plucked chicken in my nether regions!!! And progress continues. I suspect that the Omega 3 in the chia seeds are the cause but since I don't know will continue to make both a part of my diet. Btw to increase nutrients availability from the seeds soak first for 10 minutes. (then I add some other goodies and a bit of fruit and homemade granola and that is my breakfast.)

Hope this helps you.

Hi Jane. That's interesting.  You seem to be saying that the alopoecia is linked to flare ups of your ls.   I shall definitely go to find silica. Thanks for that.

hi annabel i couldnt say for sure but this only started happening when i was really bad with ls and so was quite stressed at the time it is awful and i dread when i go to the hairdressers that it has returned.also when i get the alopoecia mine happens at the back of my hair in two places.when it first happened i just kept crying but now i take the que cera attitude.i do believe the silica helps thou for when i run out one time and didnt take for about a month i could see my hair thinning again hope they work for you anythings worth a try but dont expect miracles straight away they do take a while to start working goodluck

Hi Jane,  Thanks for your reply. It doesn't sound like yours is FFA if the loss is towards back of head. But perhaps it is another auto immune! There seem to be so many!  Anyway, I shall try the silica and be patient and see if there is any improvement - or slower deterioration.  I love this forum. It's a great outlet for ones deepests darkest fears!

Hi Dana, Sorry about the hair loss. My symptoms started with the hair on my temples disappearing and probably at the same time all around my hairline.  I went to a dermatologist and a trichologist and they both diagnosed FFA. I am 55 and I think it has been going on since I started menopause. It is an auto immune thing but not a lot is known about it. It quite often recedes up to 5 inches (Please help me!!) and then sort of burns itself out. But with many people it just sort of stops after an inch or so I think.  I think I have lost about an inch over a three or four year period. So it is slow. I didn't think I had inflammation but the trichologist identified areas which were a bit inflamed. None of it will grow back as the actual hair follicles die so it is a matter of hopefully stopping it increasing.  I am on anti inflammatory drugs (anti malaria drugs) indefinitely. A bit scared to stop as sometimes people have quite a lot of loss after stopping. FFA is really a description of what is happening rather than the name of a desease. I believe they sometimes do a biopsy but it doesn't really help either way!  Hope this helps!

Worth a try. 

 

Hi Kasia,  Thank you for your kind thoughts. I am sorry you have had both LS and the alopecia so young. Its good that the LS has been diagnosed.  I'm wondering if its hereditary and whether my teenage daughters might have symptoms but have never said anything.  Do you  mind me asking what your symptoms were? Best Wishes A.