has anyone had lichens sclerosis

[tallterri]

my daughter is suffering horribly from lichens sclerosis , she is 29
does anyone know of a support forum anywhere for this.
This is a skin disease of the vaginal area that makes it paper thin and rips and bleeds and seal almost shut, she cant wear underwear.
She has set backs than heals a bit, she has so much scar tissue down there and she said its very disformed looking.
Does any one have any help please.
tallterri

terridoe@juno.com

[lacyndarella]

Her case sounds fairly severe. I have lichen sclerosis. It does not just manifest itself in the vaginal area. I first noticed mine when it appeared on my back, though it was not diagnosed until several years later. Steroid cream does clear up the outbreaks, and luckily, though undiagnosed, the treatment given for the outbreak on my back was a steroid cream. Now, I do suffer from outbreaks vaginally. I can wear underwear, but only cotton. Anything else causes the outbreaks to worsen. I do have a problem with scaring and the paper thin skin and ripping (during intercourse). But the area is not deformed in appearance...just red and irritated under the white lichen outbreaks. She needs to see a good obgyn and get treatment. I do not know of any support forum specifically for lichen sclerosis. I used to belong to a forum for autoimmune disorders since my mother was suffering from Schleroderma (and has since passed). It was there that I learned about lichen sclerosis and saw a picture of a torso and recognized my own outbreak from several years earlier. I took the info to my obgyn and asked if the chronic yeast infection I was being treated for could actually be this... I had a biopsy and the results confirmed lichen sclerosis, which is an autoimmune disorder in which the immune system attacks the skin. Autoimmune disorders run in our family. As I said, my mother had schleroderma. One of her cousins had lupus. Her grandmother had rhuematoid arthritis. Given the choice of which autoimmune disorder to have, I'll take the lichen sclerosis over those any day.

[FoolsGold]

I don't have it.
However, I've often felt that diseases such as psoriasis are really simply dermatology related manifestations of a systemic disease.

I've heard that melatonin levels are a treatment option ... though I can't really recall whether its thought that suffers have too much or too little. I think its too little and you take melatonin supplements at night. It might be best to check PubMed or something and find out. I'm really dredging this up from some very dim memories.