litchen scleroses

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 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