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I was diagnosed with Lichen Sclerosis 4weeks ago, by my gynaecologist and prescribed Dermovate.  This made everything much worse, and I wasn't happy about using steroids.  I have been doing lots of research on this horrible condition, and have decided to use alternative/natural healing.  I also have Lichen Planus in the mouth, which comes and goes and have had that for the past 30 years.  Both these disorders are primarily brought on by stress, your immune system weakens and a myriad of random symptoms can occur.  I firstly am tackling my diet, cutting out dairy, sugar, gluten caffeine and yeast.  I am applying Emu Oil, three times a day inside and out.  The supplements I am taking are L-lysine, kava kava  and a very good probiotic.  I am using yes products for lubricants.  I feel at least that I am working toward building my immune system, to control and hopefully 'put to bed' this condition.   my pharmacist has also given a probiotic which is inserted into the vagina.  Which is used to normalise and put back good bacteria.

hope this helps

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  • Posted

    Ann  that sounds like a wonderful plan.  I would like to follow some of this.  Where do you buy your emu oil from please?  and good luck
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    • Posted

      Not sure where you are, but in UK any good health food store, Planet Organic... You can also order online, or from Amazon, I am in Portugal a lot of the time and have a good store here called Harmony Health, they also ship.
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  • Posted

    Sorry to hear the Dermovate was unsuccessful for you I had opposite results virtually from day 1 combined with using Hydramol  . I had suffered for 12 years with bad irritation down below thinking it was just old age creeping in as my mother was always using Sudocream for the same reason. I have been itch free since February which is lovely no wriggling about like I am sitting on a load of nettles. Now just use Dermovate maybe once or twice a fortnight and Hydromol in the morning. Hope you get it sorted because no one knows how horrible it is until they have it. Take care Carol
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    • Posted

      Hi holiday girl,  Hope you had a good time on holiday and are still itch free.  Good to have you back.
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    • Posted

      Hi Chrisy yes had a lovely time with great friends who we have known for many years as we all bought our timeshares about the same time and made new friends with another couple we met after the others had gone home. I am still itch free thank god but after reading some stories on here the way others are feel I am lucky. Was really surprised the other day needed to get a life ins quote and they want to know about any problems you have and as it was a man felt embarrassed but tried to explain and said don't think it will be on your list but sure enough it was I was so surprised seems it is being known about more now which is good. Hope you are keeping well and itch free too.Carol
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    • Posted

      Hi Carol,  Glad you had a good time. That's funny I had to explain my symptons to the man I was speaking to for my holiday travel insurance last year.  The man went away putting me on hold for some time and eventually came back and said it was covered.  This year I had no problem with it.  I think they add medical issues as they come across them.  Itch free at the moment thanks.  Off for my check up tomorrow.  Fingers crossed everything is as good as it feels. I had no active lichen last visit but they wanted to see me in 3 months as I had a suspicious area.  Had a lot of damage to the previous visit.  That was before I learnt about keeping it all moisturised.  Hope this time all is okay. Will update any new info.  My dermatologist is very good.  I will be passing on some of the points that get raised on this site. Crisy
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    • Posted

      Glad your ok and hope all goes well at your checkup. I am off to the hospital on Wednesday with my foot. Don't know if I told you I stood on a pin a few days before going on holiday and it's still in there doesn't really hurt unless I knock it as it is in the back of my heel but would like it out now, will let you know what happens. Carol
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    • Posted

      Hi, Just to keep all informed : had a really good hospital check up yesterday. No active LS. Doc said I was well moisturised and will see me for my usual 6 month checkup. One comment I thought I would share was that she thought I could try to reduce the number of times I treat with the Dermovate so I am going to extend my breaks between treatments and try to use it once a week building up gradually. She said it was not necessary to treat skin so often if there was no sign of LS. I will keep you up to date with how this affects me.

      On the down side I fell this afternoon and broke my foot. This is making getting to the loo a bit difficult (I'm on crutches) so I envisage a bit of a problem with leakage as I suffer from stress incontinence. I'm hoping this doesn't set me back. Hey ho!!!

      Carol, I meant to ask about your pin in your foot. I hope all went well today and they can remove it this time.

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    • Posted

      Great news about your check up Chrisy!

      So sorry to hear about your foot....that's a blow! Might you be able to keep a shewee to hand? eg tied to your crutches with a length of cotton so:

      1/ you can always find it

      2/ you can always use it?

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    • Posted

      Glad your LS is fine as mine still is I only use Dermovate about once a fortnight unless I feel a bit itchy and that seems ok. Sorry to hear about your foot I've been through that about 14 years ago I tripped on a kerb and broke my ankle and tendons very badly and 2 bones in my leg and as you say needing the loo especially in the night was awfull had to hop which makes you want to go more, hope its better soon I found crawling to the loo easier . Went to hospital yesterday and going in Friday week to have it removed under anesthetiser at King George's which is near Ilford don't know if you remember . Good job I can walk x
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    • Posted

      I didn't think of that, and I have one in the drawer beside my bed. What a dunce I am. Thanks for the reminder.
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    • Posted

      Hi, I remember a hospital at Ilford but I don't know it's name. Good luck with the op. Let us know how you get on.

      I put a vote on you message as I think it shows people that you can get on top of this LS, and if you moisturise all the time it helps to prevent the LS from becoming active. Two weeks between treatment sounds great. I am going to aim for that if it is possible.

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    • Posted

      hey chrissy so glad i could help...but listen you are no dunce ....you are a gorgeous intelligent brilliant woman!!
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  • Posted

    Glad to hear this plan is working for you. It takes a lot of commitment to make such drastic dietary changes. I used mild corticosteroids for psoriasis for thirty years and when I read about the thinning of the skin and possible adrenal fatigue (right around menopause) I went off them cold turkey, suffering terrible rebound flare-ups, but soldiering on. So you can see what my attitude was to steroid cream.

    However, when I had sort of a catastrophic LS flare last summer (had had it all my life, not noticed by any number of gynegologists and dermatologists) I was finally diagnosed. My gynae prescribed Clobetasol (Dermovate in UK) and estrogen (vaginal). I soon ditched the estrogen, which made me depressed. Instead I use lots of natural oily creams and ointments to keep everything protected from cracking and itching.

    The atrophy I've experienced has me scared of ditching the Clobetasol. I'm comfortable down there. I know my stress is low and my diet is clean, because my psoriasis is 100% clear. A bit of chocolate or too much sugar will make my back door burn and I have an active tear about half the time in my perineum. I'm convinced that the prescription keeps this to a minimum, hopefully reducing my odds of getting cancer, which is higher for us.

    Sex is over. The one time I tried six months ago, the friction caused a raging yeast infection. I'm just too narrow.

    So, just adding my two cents for balance. You've done well to figure out what to do after Dermovate failed you. From everything I've read here over the past year, LS is extremely varied.

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    • Posted

      Hi Morrell,

      interesting about your experience with oestrogen.  I stopped it fairly quickly because it seemed to be making the irritation worse and there was one occasion when I had to get in the shower to wash everyting off, because the discomfort was so great.  I have tried cutting down the Dermovate, but contrary to ann's exoerience,  it is the only thing that works and I am using it night and morning (again) at the moment because of a stress induced flare up (of pseudo LS as I call it).

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    • Posted

      My understanding is that we're prescribed estrogen in hopes that it will bring back the pliancy of the vulva and maybe allow sex. In my case this was way over-optimistic of my young gynae. So, why waste the side effects of hormones if I'm having success by greasing up with nice herbal ointments and creams made with food quality vegetable oils and organic beeswax? When I was diagnosed a year ago I had a line of splitting skin along the folds of my labia that hurt like hell constantly. Clobetasol has calmed that down and I use it twice a week in tiny amounts. The grease does the rest.

      If they're prescribing it to cancel out the skin-thinning effects of Clobetasol/Dermovate, well it's too high a price to pay (for me).

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