lichen sclerosis

Hi Horses. this might be worth trying. Sit on your bed and partly prop yourself up with several pillows. Then open your legs and bend your knees, making yourself comfortable. Use a magnifying mirror.

Other way if you have a magnifying mirror on a short stand, put it on a chair or stool, and place one foot on the stool with it, tilt the mirror for the best view. Best do this in a good light, a nearby lamp will do, or treat yourself to one of these mirrors with built in lights. I think Boots do them.

Hi Joodie,

I will give it a try with my magnifying mirror, but as it magnifies 10 times, everything is pretty distorted!! Probably just as well!! Thank you for the good advice.... good night all!

Horses

Hi, thanks everyone for all the information, I was diagnosed with LS a week ago, it was a shock as I'd never heard of it, some descriptions and especially photos are very scary. I think I've had it for months, I don't itch but get very sore, front and back, and have felt what I can only describe as what feel like paper cuts. I initially saw a pharmacist who told me to use Sudocrem as a soothing barrier cream, it did ease it a bit. The doctor prescribed Betnovate which after a week has finally had some effect, I can now sit down and go to the toilet without too much pain. I was given a print out about the disease but no real discussion, I have to go back in a few weeks to see how I am getting on so will have a list of questions to ask. I find it distressing that it will never go away but just hope that I can control it before too much permanent damage occurs, it is comforting to hear from others in the same situation who understand what I am going through. Cheers and best of luck all.

I hope you have found some decent cures. or at least something that passes time in comfort! I really do wish everyone the best, and maybe one day we'll have for sure cures for everything that comes around!

Hi Pollyanne, I know just how you're feeling, I was diagnosed about 8 weeks ago, I am using Dermovate which has been a god send, that I can finally pass a bowel movement without being ripped to shreds, can spend a penny without dreading it & just to be able to sleep without itching is heavenly.

I am waiting to see a specialist at the Vulva clinic next month, am quite anxious about it, like everyone is & just want to get it over with now.

You will find so many tip's & advice on this site & the different forums...they have been such a massive help to me, just to have an idea what to try. I like you had never heard of LS & it is terrifying being thrown in at the deep end & basically left to get on with it.

It is worth trying some of the different lotions & potions that the girls have suggested, I tried the Tea tree oil for my open tears & sores....Heaven, they healed within 2 day's. Not everything will be for you, but it really is worth a try.

If it hadn't been for the girl's help & suggestions on here, I would be no further forward, & as bizarre as it sound's...I found it such a comfort, knowing i'm not alone & other people are too like me.

Don't be afraid to ask, because someone will know the answer, It does get easier to manage & with all the help & support I have found on here it is incredible how you get a bit stronger everyday.

Keep us posted how you are getting on, best wishes T xx

Thanks for your responses, it is a case of trial and error, I washed with "Femfresh" last night but it stung, I could have used a bit too much, I have also used Aqueoes cream which was ok. My trouble is I don't know what it looked like because I just didn't bother to look, I just thought I was sore from over enthusiastic bottom wiping! Never thought to have a look and see but it did feel like cuts, anyway now I have started to monitor it and will hopefully see some improvement, can anyone tell me whether I put Betnovate just on the sores or also on the white patches which don't hurt now?

Hi Pollyanne,

I don't think it is a very good idea to use Femfresh. It was one of the first mistakes I made and I was very sore afterwards. Stick to the Aqueous Cream, which at least is a moisturiser and I use it as soap. It seems so awful to begin with but, believe me, you start to get the hang of it and, with all the help of these lovely ladies, things start to get better. Keep yourself well moisturised ALL the time. My dermatologist recommended Zeroguent which is a barrier cream as well. It definitely works for me, but there are plenty of other products out there. It is all a question of trial and error. Someone recommended zinc tablets to help with the cuts behind and these have really helped me - I believe zinc was used by the Egyptians many years ago!!

We are all here for you so best of luck!

W xx

Hi Pollyanne,

I tried Femfresh (Aaargh) never again, I use Dove soap or E45 emollient wash, I know you don't get that real clean feeling like you would normally, but at least you won't be in tears or dread spending a penny for the rest of the day.

I do use 100% pure tea tree oil for any sores & they have healed really quickly, I got mine from Amazon £11. -ish (ABC) Australian Body Care, I did try Holland & Barrett's version, but found it is like the bottom of the drip tray stuff, so gave up with that after I read a lot about their products.

I know the feeling of the bottom wiping, I now use un-scented wet wipes, you'll will find that really helpful, Doesn't hurt just to damp it down a tiny bit more with water just until things start to heal better.

I haven't tried any zinc products, but as I've said to the girls recently...I don't think my symptoms are anywhere near as bad as some of the girls are. I do use 100% pure Emu Oil for moisture, that also is from Amazon & has helped greatly, the down side I find with it, it is very runny & can get a bit messy, so I put some onto cotton pads & dab, I do the same with the tea tree oil too, a few drips on a damp cotton pad, hold it on the sore areas for a couple of minutes, It didn't hurt or sting, it actually felt quite soothing.

Don't do what I did with the tea tree oil & put it on neat out of the bottle...whoops!! again it was fine, didn't hurt etc, but your skin could be a lot more sensitive than mine, so dilute it down first then maybe add an extra drop after a few day's. That's probably why mine healed so quickly, neat tea tree oil . Try to use as many pure products as you can, it will help.

I use Dermovate, personally...I would use it on the white patches also, I put mine on my white patches, I don't think t can do too much harm while your waiting to see the specialist, my patches were never sore, just the tears, scar's & the itching have been hell-ish, but once I started the cream it eased within days.

Horses has been a massive help to me along with the other girls, I can assure you, you will find it get's easier, I was told that about 7 weeks ago & thought yeh of course it does. But it really does, never thought I would be saying that to another newbie. If you can a££ord to buy 1 product a week it really is worth it if it makes everyday a little better. Not everything you try will work, but you have nothing to lose, if anything does hurt or sting, STOP, I know it's soul-destroying to throw new products away that don't work, but if you bin it you aren't tempted a 2nd time just in case. Keep us posted best wishes T xx

Thanks again for the advice, I have some Emu Oil and Tea Tree from when I went to Australia so will dig it out and give it a try, I don't think my symptoms are as severe as many but day after day it just niggles at you and gets you down, I find getting In and out of the car the worst thing.

I actually had a bar of Dove in my hand then saw the Femfresh and got seduced by the blurb on the bottle so swapped.

It is great to have people to sound off to who understand, thanks again. X

Hi all . Re the runny emu oil, I had Swansons pure free range from the USA first and it was great. Then I got some from Australia but it was runny. All I can think is they must have been thinning it down. I took delivery yesterday of another Swansons one and it is much easier. You can tip some onto your finger and if you are careful, it won't drip at all.

Not saying all Aussie ones are drippy! Just it's worth searching around.

Hi Joodie,

Thanks for the tip. My emu oil comes from Australia (I must have thought that would be the best, considering where emus come from) and I have tins of it. I have marked Swansons down for next time.

For Pollyanne, sorry but why is it difficult getting in and out of cars??? Are you wearing skirts, now that it is summer. I find I am not so sore as when I am in trousers! These will probably be fatal last words....

Bye for now xx

Hi Horses, it' s when I put one foot in first leaving the other one out to get them in one at a time and then shuffle to get central on the seat, It seems to stretch the sores somewhat. Perhaps I'll have to learn to get in lady like by sitting down first, but then I'd still have to swivel, ouch!

I am finding Emu oil very soothing thanks, mine is a quite old half bottle so is a good consistency. Cheers. X

Hi Pollyanne,

Where would we be without emu oil?; I'm mixing it with the dermovate, as suggested by someone, and this is definitely helping. However, I am off again to Italy tomorrow and cannot take the emu oil with me. It doesn't travel well and quickly becomes liquid, so I shall have to do without it. No wifi either, so I will really miss you all.

Take care all and look forward to knowing how you are when I get back in September.

Horses

Hi, we'll if you are on holiday it should be relaxing and help, I've read that stress can make it worse. Have a good time I have now stocked up on Dove. X

Morning Girl's,

Grrrrr! Girlie week & I'm suffering like Billy-O, I could do with buying my own fire engine! This has got to be the worst I've been yet, Everything is on FIRE!! & so sore, even the Emu oil seems to be stinging today & I feel so dry even with the Emu oil....Any suggestions please.

Horses, Just want to wish you a fantastic holiday & safe journey, Could you indulge in just one small glass of Vino for me please, take care, relax & enjoy, we'll miss you. Best Wishes T xx