I am so angry

Hi there, I have been diagnosed with LS by my GP who could tell by the look of me that it was LS, and that it had been silent. I thought any symptoms I was experiencing was post menapausal dryness etc My GP agreed to treat me (I now know thats essential) and gave me Dermovate which has made me a lot more comfortable.(I now realize how uncomfortable I have been) I have asked her to refer me to Dermatology and she has done so, as I realize that her asssertion that my LS has burnt out is inaccurate, and that LS is a lifelong disease which I think does NOT burn out. I now have a red (stingy when i pee) spot at the entrance to my vagina, and from viewing posts, realize I should put the dermovate on it. I have lost my labia and believe the entrance to my vagina has probably narrowed. I know longer know what I am supposed to look like, which makes me laugh in a hollow way!!! My clitoris just doesn't look right; ??? I feel the skin above it has joined up and I cannot see it unless I pull the surrounding skin up and away-sorry to be so graphic! Sometimes I feel as though it looks swollen but maybe thats 'cause I've touched it?I got concerned when I read somewhere that if it is \"covered\" then stuff can build up underneath it?Can you tell me what youmean when you say you have \"lost\" yours? thanks. Also I'm interested in the inner thighs thing-for some time I've looked red-is this just cos my thighs touch each other or is this extragenital? Also as you can tell, I'm becoming anxious about anything!!! Thanks to all for all the posted information and support. Although I get low looking at the site I know how helpful I am finding it. All best to all,Loopsy

Oh you poor things...Mis diagnosis's and wrong interpretations because the docs just arn't sure of whats what leads us to years of untreated lichen which can still deform even though we have little or dormant symptoms to speak of apart from 'oh its probably thrush' etc., I have had LS for a couple of years diagnosed and at least a year with awful symptoms before that which i tried to self treat because i had never heard of LS or the like. I now have my own site and message board and I know from the experiences of my self and the girls I have on **** that your clitoris does disappear but that your sensations remain. I have lost mine . Where I used to feel its prominence it is now a case of hunt and find it!! but i can still feel arousal. I have no labias either, although i was never very blessed in that area anyway. we have all had talks about diagnosises etc., and we've come to the conclusion that regardless of the differing diagnosises, these symptoms need treating sensibly and daily, for you own comfort. You need your steroids as they are the only treatment for this horror, you need to have no contact with soap in these areas (wash with an aqueaus soap free paste) and you need to barrier against the wetness and heal the surface sores and itch with a good recommended ointment. I have never heard of anyone stating that there can be a nasty buildup etc., when your clit disappears so dont worry too much about that. LS definately does not die. You gets flareups etc., but it is imperitive to keep control daily, so that, as with me (one flareup in 8months now), still slightly sore but no itch, you can lessen the symptoms on a daily basis. You can search till you are blue and it is a subject that will run and run and as yet apart from knowing basically the causes (auto-immune) there is no cure. So looking out for yourself and self treatment with knowledge gained from ladies that have been there ,is giving us more hope and comfort than our medics. Please keep posting and looking at the back threads here and on ****, you will get so much good info from us all. Take good care Mal

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Hi , Update on inner thigh discomfort.I started taking amitriptyline (a low dose of antidepressant) but my outer thigh pain came back.I have stopped taking them. In January I started to have luke warm bath each evening.(only half a bath). In the bath I put a cap full of sweet almond oil and one or two drops of essential oils. Jojoba oil or Lavender is my favorite, but there are other essential oil which are good for the skin. When my skin is dry it burns so by bathing the whole of my skin I feel very comfortable. The essential oils are a natural cleanser so no soap needed. In the morning I just wash my top half. My vulvar is getting very comfortable and my inner thighs are not burning.

Another piece of information from my gyny. I complained to him that the dermovate prescribed although needed to keep LS away, would often make me worse with soreness. He suggested I try Hc45 Hydrocortisone 1% this is a very mild steroid and can be prescribed to children. If you have a bad flare then a potent steroid is needed ,but for maintenance the Hc45 seems to be doing the job with no soreness. We are all different and finding the right routine for you will make all the difference.x

hi ....if your gp has vitrtually ignored the problem for 2 years and the specialist has a 'you poor thing' attitude it would be reasonable for you to ask for a second opinion ...it was my understanding that there was an operation that could make sex easier ...dont give up on the internet thing ...or the LS ....keep positive