lichen sclerosis

My name is Lorna....I hope you don't mind me joining, but I am at my wits end

I was diagnosed with LS 2 weeks ago after a year of Hell and it has devastated me. I have lost 3 stones

in weight and am a nervous wreck. My hubby of 40 odd years is of no support. Your problem not mine.

Having stumbled upon your site and reading your comments has helped, knowing there are other ladies

trying to cope with this rotten condition.

The only help I have been given is a tube of Hydrocortisone to use a night, every night for a month, whilst

I read most of you Guys are on Dermovate.

The only relief I get is to use a cold damp flannel and I go to sleep with the damp flannel " in place" between my legs. I bought Vagisil but it only helped for a couple of days.

Any info on creams etc, to help cool it down and numb it would be very much appreciated.

Thanks

Lorna65 - you will get a lot of help and support here on this forum. Take a read through all the comments and I'm sure you will find some creams and potions to use which will help.

Blue x

grrr. (Men can get LS too you know)

I know of a physician ( GP ) who has LS and she said she used to keep a packet of frozen peas in her office fridge in the raging early days of her LS, for placing between her two pairs of knickers.

You must make all efforts to get the dermovate on prescription. I was given hydrocortisone at first for my LP but it didn't help at all, but dermovate did. What blessed relief. Same with the LS. My consultant prescribed the dermovate straight away.

I wish you well with the inflammation.

So sorry that you have LS, it always comes as a bit of a shock. I have LP as well, so happy days!! My dermatologist recommended Zeroguent as a moisturising cream which I can use front and back, it is a sort of barrier cream and seems to work for me at present. I am thankfully using dermovate, but I had to ask for it, as I was using something else before that which wasn't helping at all. I am also taking zinc tablets, which someone recommended, as I have LS (or LP, I still don't know the difference) in the backside and have developed fissures. I suppose the dermovate has thinned the skin, or perhaps it is just thinning with old age - I am 71.

Perhaps your husband is uncomfortable about this awkward subject. Mine is incredibly supportive, but I find it very difficult to talk to him about it and am so pleased that this forum helps enormously and I have discovered all sorts of remedies and creams. It is all a matter of trial and error. Please let us know if we can advise you. In the meantime, be assured that you gradually get used to it and it just becomes a very important part of your life. Washing and moisturising seem to fill my days!!

Best of luck,

Horses xx

I don't seem to be able to get any comments, after Horses on the 9th July!!!!!!!

Can anyone help, it wont click on to page 5

It is because you are on page 5 and horse's comment from 09/07/13 is the last entry before your post above. If you are struggling with using the forums send me a Private Message using the button under my username to the left of here and I can advise.

Regards,

Alan

Emis Moderator

Do hope you can let us know how things are progressing with you? I am sure Emis Moderator will be able to help you, so that we can be in contact again.

Good luck,

xx

I am very confused and not 100% sure I have it as I do not have any itching or sores. I have been having recurrent cystitis for the last 3 years and was seen by a Urologist in February for a colposcopy . When a went for my results 6 weeks later the consultant told me I had LS. I had never heard of this and after reading about it I was very scared and worried about what was going to happen to my bits, so many stories. She referred me to a gynaecologist. I couldn't wait another 9 months to see someone as I did for the urology appointment . I had to go private to help my Sanity . I saw gyn who specialised in vulva cancer, though he should have a good knowledge of the area involved.

He examined me and said I had a white patch around the uretha area but I also had Atrophy Vaginitis .which I was aware but was trying to get my cystitis sorted first. He also said I had a skin bridge across the opening of my vagina. He gave me some Dermovate cream to use every day for 1 month then every day for the second month. I also was given Vagifem to use. I had to use the Vagifem first as I was really sore round the urethra and putting ant cream there would cause cystitis . I eventually got going with the Dermovate as I was told to do. I have just had a 3 mth check and even though the area is still white he says I am looking much better down there and he is happy. The Vagifem has been good as that has taken the soreness and dryness from inside and sex is easier apart from me feeling the skin bridge.

My confusion is my gyny is not convinced I have LS as he said it is unusual and does not look like normal LSand has just told me to carry on with the Vagifem for the next 3 mths when he will see me again.

It has left me so confused as my urologist said I have and my gyny is not so sure!!.

Has any one else been diagnosed with LS that have no symptoms apart from white patches. Although I think maybe cystitis, and skin forming over the opening are symptoms too,!

I am such a worrier and do not have a day go by without this being on my mind.

If I were you I would go to see a dermatologist and have a biopsy, which will confirm either way whether you have LS or not. It must be awful with so many conflicting opinions and at least it will put your mind at rest. Others with LS have mentioned that they do not have any itching, lucky things, as we are all made differently. I am amazed that no-one has suggested a biopsy to you, once they "thought" you had it.

Try not to worry - easier said than done - and let us know how you get on.

Take care,

Horses

Hope you all had a restful weekend ?? Mine was ok, the party I was sort of fretting about actually got cancelled, so big weight off my mind.

However, Some bad news which actually turned out in my favour....I decided to treat myself on Saturday to a long overdue pamper day, 90% of it was really lovely, the usual eyebrow wax, etc. etc., My usual beautician was off sick, so one of the other girls saw to me, had the usual bikini wax done, & boy-o-boy, she was VERY enthusiastic, it was only after she'd packed the hedge trimmers away & I went to take a shower, had a quick peep at the girlie bit's & WOW, I'm even whiter than I thought.

She actually did me a massive favour by removing so much hair, that I can see much more thoroughly & noticed how badly my outer labia is suffering too. I had never seen how white it was so this came as a massive shock to me, but at least now I can concentrate on that area too. So in future I might get a little extra done every time to be able to keep a much better eye on things down there.

Apart from that everything looks the same, I had a complete itch free weekend & was daring enough on Saturday night to try going to bed (commando) with no dermovate....Ohhh it was lovely, had a really sensible diet, No Vino & actually feeling quite good today, Long may it last !! I won't hold my breath for too long tho' , Hope you are all well Trace xx

8 weeks seems like a very long time to me. Can't you bring your appointment forward with you gynocologist? I was dreading the biopsy, after all the stories I had heard, but trust me there are far worse things to have to go through in life! Make sure you go to a kind dermatologist, who will treat you as you should be treated. Try not to worry and hang in there.

xxx

I am very envious when I hear how you all seem to study your nether regions!!! I have contorted myself any which way, but still can never see anything worth seeing. My dermo. often tells me I have sores and other nastinesses down there and I rush back home, grab a mirror and start doing the splits on the floor, all to no avail. Just mists up the mirror!!! What is your secret??? I will definitely have to go on a strict diet - soon!!

Take care!

Horses xx