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.
Jackie
I have had this for about 7 years and I only find steroids help and I don't think a change in diet will make any difference. I have just learnt to live with mine
Please can someone offer something a bit more uplifting than Marys " i have learnt to live with it". I would prefer it had to learn to live with me than the other way round.
I really believe one of the reasons that so little research is being done on this dreadful condition is because we women don't talk about it out loud. I have shared with all my friends - none of whom had ever heard of it liike me. We should be screaming from the rooftops and asking the medical community for more research help.
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.
Hi jackie,
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.
Take care
Fiona
Hi Jackie,
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.
Hi Jackie, some people do not have it as bad as others. Some even have periods when it is dormant. I use Advantan fatty ointment and Dermeze as a moisturiser. I am in Australia. I have just had a Crohns flare which seemed to affect the LS as well because it flared as well. I am also a diabetic. It took many years before I got atrophy with it so you never get that or it may be a long way down the track. Try not to stress because it does not help and makes it worse in fact. I do not believe diet has anything to do with it. Having a healthy diet is always good though with lots of vegetables and fruit and good food rather than sweets and rubbish. There are worse things to have if that is any consolation. All the best.
I have only recently been diagnosed and like you and everyone with this condition I have been feeling pretty down. I have had great success healing the fissures with red light therapy. I see an improvement after 3 ten minute sessions and after four days I am completely healed.
have done this twice now with the same results. I use the DPL red light and use it twice a day for 10 minutes. My light has both visible red light and near infrared light. When I stop using the light the fissures return within a week so it is not a cure. I am going to see if I can prevent the fissures by continuing to use the therapy. Now that I'm healed I will try doing one 10 minute session a day and see if it is preventative. If that doesn't work then I will up it to two sessions a day. I will repost and let you know how this goes. Good luck, you are not alone in this.
Hi Jackie
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
Hi Jackie are you using a moistureizer as well. I use Hydromol ointment after washing down below put it on thick and you can also wash with this. We all think its very personnel and that's why not enough is known about it. I have been itch free since January after suffering for 12 years thinking it was old age. Good luck Carol
Hi Jackie, first let me say I understand how worried you are for the future of your condition. I went thro very similar feelings when diagnosed about 5 years ago I think. In my case I am itch free for most of the time, I will get a flare up now if I get stressed or upset emotionally. I then will use the Demovate with joy and pleasure becaue the relief it brings is so welcome. I had a very traumatic few years on the lead up to the itch, at the same time my gynae drastically reduced the HRT I was on as I had uterine polyps. After travelling in Australia having put on weight my trousers getting tighter by the day, I thought I had thrush and was treated medically and with creams - it was when I was examined it ws realised I had LS. I was contemplating getting divorced, living far away from my social network building a house on my own, looking after a dying relative -I had never felt so alone. However I made a point of letting all my female friends and relatives know about the condition. I used the term "The Itch on my Undercarriage" - it made it easier to discuss. I wanted all my female friends to start to look in the mirror at themselves - and tell their daughters to o so to, so they would know what their normal anatomy is like, and not carry on in the belief it is thrush. I changed the gynae consultant and was returned to the normal dose of HRT on Dermovate - a pea sized amount every day until the condition settled down. I have been discharged from the gynae as the condition is quiescent- ie dormant- for the time being - except as I said when I get stressed. I understand thereis no cure - but there is hope lots of it. A healthy diet is good, whether you go down the extreme diets some are advocating it is up to you, and whether you want something else to worry about. Stress however is bad. Cortisols floating around the body have many unpleasent affects on the body- one I believe is LS an auto immune disease. I understand that low thyroid levels are also noted with the condition. Several people on the site have one or more auto immune conditions. There is also the theory that lower sex hormone levels- as in menopause -sesation of HRT too quickly or other causes for fluctuating hormone levels will also bring on the condition
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
Sue
Hi Jackie, sorry to hear you have this condition. I too have only recently been diagnosed and have told no one except my husband and I have no intention of doing so. I had enough of an issue talking to my husband as about this condition as it made me feel so overwhelmed, out of control, unfeminine and old. I am late 50's. It's quite hard to get a handle on it and there does seem to be very little research done. There is a lot of scary stuff and I don't look at any pics. I am trying to be positive and do what I can to keep it from flaring up again. Hope you have found a way to control your symptoms. Mary
that's nice sue...and a big virtual hug for you too...you deserve it!
love marey xxxxxxxxxxxxxxxxxxxxx
Thank you Sue its so nice to hear positive ladies out there, it stops me feeling its all doom and gloom. We can have happy healthy lives with this inconvenience!!
Thank you Marey!
Also it can be amusing to try and find ways to Do The Itch Dance in public...I find that when it is THE most embarrassing or awkward The Itch reappears, and the bodily contortions needed to relieve the Itch - and not to be like men who seemingly have NO inhibitions about scratching where they like as often as they like - would make interesting watching!
Keep smiling and look for half full glasses not half empty ones
Sue
welcome! xxxxxxxxxxxxxxxxxxxxxxx
Love to you too Jackie....can you visualise sue d doing her moves!! The itch dance in public...hope she 's cheered you up as much as me!! Tee Hee...........
Marey xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
hello sue...how do you do...made me think of ab fab ....you know the one where they mock the males and end up mating with the TV as far as I remember!! xxxxxxxxxxxxxxxxxxxxxxxxxxxx
Cheered me up to, just knowing ive someone to whinge to helps me loads. Think we should all do the itch dance we could start a trend.
xx
you tell me your movements and i will tell you mine!!!
Whinge away whenever you feel a whinge coming on
Sue
Maybe we can recognise each other while out shopping or gadding...?