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Hi i am quite recently diagnosed with litchen scleroses and i am getting obssessed with finding out about it, quite frankly i am a little scared becuase it seems i have so little control over what happens to my body. I am using dermovate and it does help but the symptoms return as soon as i stop. Can anyone recommend anything other than a steroid and did anyone find that adjusting their diet helped. Apart from my husband i havent even told anyone because it seems so personal.
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Lately i have seen advertisements for a product called "Neogyn" a cream proted as being developed by Swiss scientists. Has anyone tried it? I
now use CMO cream which does me temporary relief. I have stopped steroids for now because i fear the fusing effect. Sleepless nights are terrible though.
I was diagnosed 6 months ago, aged 49 and was devastated. I have had good days and bad days with it. Yes, it's hard to come to terms with a condition that can't be cured. I have joined the yahoo group, which has been helpful. I am also using dermovate -have gone from twice a a day and now at once a day -hoping to taper down further. i have also bought some coconut oil, which although it doesn;t cure the disease it eases the symptoms. I am most worried about the 'loss of architecture' aspect of this illness -makes me feel like I'm not a female!!
I understand why you have only told your husband, but we need to raise awareness of this disease, especially amongst other women. For this reason I decided to tell my female friends, and i must say that I felt much better as a result (although I must say that one or two did not take it as well as I hoped!).
Reading up about stuff on the internet can be very informative, but it can also be very scary.
Sorry to hear you've joned our club. I know what you mean about getting obsessed.
The bottom line is the dermovate is for life. It's to prevent bad flare-ups, which cause scarring and atrophy. The other oily creams we all experiment with are to prevent dryness and itching, and to sooth burning. The scariest info online is photos of super-atrophied old women. Look at those when you're toying with stopping the Dermovate.
LS does go into remission for quite long periods. I'm 62 and have had it since birth (relatively unusual) and managed to have two kids by natural childbirth and had pleasurable sex into my sixties, with times when the LS prevented it along the way. My theory is that remission can coincide with stopping the steroids, giving the illusion that you don't need them. I had none till recently and I would not wish my atrophy on anyone. In my late forties my clitoris had been scarred over to the point where the amount of friction I needed in sex caused repeated yeast infections and LS flare-ups. Later I learned to make do with much less friction.
Do look through this forum's discussions. It's quite level-headed and full of nitty-gritty hints and emotional support.
I think you'll see there's general agreement among us that because LS is an auto-immune disorder, a diet that's good for leaky gut makes sense. There's no shortage of info out there on that. Some of us strongly agree that sugar and especially chocolate are best kept to a minimum.
Yes I concurr with the leaky gut theory. So sorry that you have the condition...but actually with work it can be cured.
I know three women now who have succeeded.
Intestinal Permeability (IP) or leaky gut has various causes and manifests in many different ways including as arthritis, M.S, Lupus, and all sorts of things. They are all connected and can be trcaed back to IP.
I can give you some reading references and would like to invite you to join the gut healing programme that I'm trying to initiate for mutual support.
Personally I 've given up gluten and all grains. I had been thinking about taking that step anyway ....I had enormous relief immediately. I'm not finding it too difficult. Dairy is now my next hurdle....think its casein causing the prob for now but once the gut has healed I'll prob be able to get back to yoghurt at least as fermented products are very beneficial.
Its all about layering ....the dis ease has manifested after a build up of various pre-conditions ...working through one layer brings exposure to the next ...so the body says thanks for fixing that....with the display of a period of relief ...then the next level shows itself to be worked upon. Quite miraculous really! But also logical.
I wonder if this thought might help Jackie.... That you're being guided to address your health and to be part of the resistance movement to all the pollution and poisoning of our food (and that of third world peoples who are being systematically undermined) that is being pushed in the world by conglomerate business interests. Until enough people like us rise up and object in effective ways. this will continue. Including all the cruelty to animals who are being farmed as comodities. If this is too much for you please disregard! But our health is precious. There is a collective aspect to it as well however.
Although very personal and private I applaud the women on here who are sharing information about the condition by way of consciousness raising.
Love Marey xxxxxxxxxxxxxxxxxxxxxx
I was happy to see another local Aussie on here. I am looking for a specialist i can see for this condition. I live in remote North West NSW. I am finding it very difficult to find information and clinics that are for this condition. I also have another autoimmune disease as well. Possibly two others
Thank you for your sharing and information.
There is a lot of very sensible advice written on this site, and a huge amount of warmth and fellow feeling. Loose clothing /going commando /wash and cream after a wee are just some of the good advice suggested
. Do talk to you close friends they too will surprised the condition exists and they may be sad for you too, so pecker up there are long periods of remission possible if you are lucky So have a virtual hug from us all and Hopefully you will go into remission soon
love marey xxxxxxxxxxxxxxxxxxxxx
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