lichen sclerosus - sorry TMI!

[caitlinohara]

Been to the doc's yesterday and she reckons I have this. Apparently it's quite uncommon in people my age (37) but I have all the symptoms - previous doctor said thrush but no thrush treatments worked so I went back for a second opinion.

Does anyone else have it? My symptoms are intense itching (doc prescribed steroid cream but it doesn't seem to be helping yet) and the skin of my vulva is quite swollen. The whole clitoral area is very swollen and I have a tiny itchy white spot near there which burns when I touch it. I have to go back in 2 weeks to see if there is any improvement and she took swabs to confirm it. Apparently the symptoms can be controlled to an extent but there is no cure and you're basically likely to be stuck with it.

I am so about it - I'm not particularly worried about the increased cancer risk as this is pretty minor and I know I will be vigilant about checking from now on. I am more worried about the overall effect this is going to have on my sex life. Dh is hopeless when there is anything wrong with me - he alternates between ignoring it/being irritated usually, and in this case seems unwilling to take it seriously but I am genuinely worried that it will completely change sex for me - i don't orgasm from ps so have to have clitoral stimulation and the way it is at the moment I can't see that happening

What symptoms did you have? Just itching?

I know I'm dredging this thread up but I joined after a quick google - mainly because LS seems to be so bloody rare in younger women and it's scary!

I got diagnosed a year ago after years of intermittent itching and treatment for excema/thrush. Got pregnant shortly after and symptoms abated and its only recently they've flared up again. I'm going through a bit of a rough patch with it all mentally at the moment - although I can mostly control the itching I have quite a bit of scarring, fusing of labia, some clitoral fusion etc and I got myself into a state googling worst case scenarios and worrying that I'll "close up" completely. It's not a nice condition at all and bloody impossible to speak to anyone about!

I had this diagnosed as a child. I had another bout in my 20's but dr didn't believe me at first, until she read my notes. I haven't had a bout in years because I am particularly careful about what I use down there. I was horrid as a child tho... Made worse by being an object of curiosity to drs and student drs. I once refused to show a group of about 8 my young girl parts because I had simply had enough (and considered it private), even tho they said "we might never get to see it on a child again..." I feel your pain tho! I just hope mine doesn't come back because all my old notes were destroyed in a fire at my old gp practice, so there is no evidence of the diagnosis now!

I remember from my 20's bout that I used to blister quite badly etc. use a jug of water when you pee if it is really sore.