lichen sclerosis

Good on you bluelady. It is unbelievable that no one has heard of it. I had such a shock when the urologist told me she made it sound like it was just a little patch of white skin . she did not explain any thing about it at all. She just passed me to the Gyny said he would give me some cream to use. She said she would see me in 3 month, never heard from her since been 5 mths just passed me on I came home and looked it up Wow was that some shock I felt petrified. Think the worse thing for me was that it was not going to clear up after the cream. My gyny sent fact sheet of paper with the basics on but it doesn't tell you how evasive it can be. Not one person who I have mentioned the condition too has ever heard it. Can't believe it that is not spoke about along sitde other women,s problems. Needs to be on embarrassing bodies!!! I don't think anyone will understand the fear you feel when you eventually find out the details. I for one am so grateful for this forum as I am learning lots. Don't know what I would have done without it. X

29 years ladies and gents and they now believe this is what I have had since I was 6 months of age. Any one have great OTC treatments that will calm the flair up and maybe even take down the swelling of the vulva and vaginal lip that can be found in the USA. I was told to try olive oil and have started it tonight as well. Sadly 3 dermatologists later a regular doctor has informed me she strongly believes this is what I have. Biopsy was not ran for this but it is not cancerous or psoriasis.

Morning Girl's,

Blue....have got to congratulate you on your "sneaky" ploy, what a fantastic idea, I think it's wonderful that you have plucked up the courage to confront them all about it to make them aware of LS.

I work in the construction industry & work with 1 other female & managed to brooch the subject with her, I don't have many female friends as I have always worked in male dominated industries, & have only 1 friend dating back to school that I've kept in contact with, but am struggling to find the courage to tell her & talk to her about it. Sounds daft I know, but I think I really need to get to grips with it first & maybe try in a few months time.

Most of my friends are male & I do find it impossible to discuss it with them, as much as I want to so they can discuss it with their wife's & partners etc, I find it just not appropriate to chat to men about it, even though men also suffer with the awful illness.

I'm so glad that everyone here can feel we can all talk to each other, so openly & honestly, it makes you feel a whole lot better just knowing your not alone, keep up the great work girl's & thank you T xx

Hi Kristina, oils are great, almost essential really if you have LS, as part of your treatment plan. They will help to prevent the soreness by keeping the area moist. I've heard of olive oil being recommended before, also coconut oil, castor oil, emu oil ( my own favourite), and I'm sure others here can recommend others to try.

Barrier creams or just plain Vaseline are good too for during flareups when your skin is already sore as they stop the irritation of the urine making it worse, and give the skin a chance to heal underneath..

Have they given you clobetasol?

Fancy you have had LS. all this time, but then how could you have known as it is never seen in mag articles, tv progs etc. is it? There is an excellent US Lichen Sclerosis site on yahoo groups where they are more familiar with what is available there. Let me know if you can't find it. and I will help.

Joodie Is the site you mention Living with LS. I have read that site and found it very interesting , I have tried to join the Yahoo forum though but have not had much luck in getting in. The lady who wrote it is Dee .is that the same one. X

Yes, It is Dee's one, a yahoo groups lichen sclerosis one. They spell sclerosis with an I , not with a U as here . When I joined you had to write a bit about your LP or LS first to show you were genuine as it is a private ( free ) site.

Once you work out how to use the site you would find it is full of well laid out information as well as the forum. Sad to say but in the UK our health service is not as well up on LP and LS as you are in the US.

Not knocking this forum as the friendly support between fellow sufferers is worth its weight in gold, whatever country we are in!! x

HI

i am new to the Forum

i can sympathise with all of you . I am due this morning to see the Gynaecolgist, i have had an itch and have been very sore , for weeks . My Doc has just confirmed i have a urine infection , but still wants me to see the Gyny, i will let you know what he says

I am on Vagifem at the moment>>>> i have tried replens , while it did help i find it leaves a lot of white stuff around

kathy

Hello I have been an ls sufferer for 10 years. It took 5 years for a diagnosis. I don't believe anyone can understand the misery of this condition unless you've got it. It has ruined my sex life with my (very understanding) Husband. Over the years I have used clobetsaol, dermovate and now betnovate. Also oral steroids amongst other things.

I have to wear trousers for my job and tbh it is agony everyday. Off duty I live in long skirts with nothing underneath, nerve racking when it's a windy day! I have read others posts and feel sorry you've got this god awful thing but feel like I am not on my own anymore.

Kindest regards to you all.

Welcome to the forum Butterfly, it' s strange how talking, virtually, to strangers helps but it does. I must be lucky to have been diagnosed on my first visit to the doctor, but after a month of treatment I can't see any improvement although the soreness has subsided quite a bit. Can anyone tell me do the white patches disappear at all or are they there forever? It must be dreadful to have had it for so long, especially if you are quite young . Chins up all. X

Hi Pollyanne. My white patches come and go, a month is early days but its good the soreness has faded a little.. I am heading back to gp tomorrow to get a referral back to my dermatologist. I was given the opportunity to go back should I have a prolonged flare up so am taking it. I would like to warn anyone using the strong steroid creams to be aware of how it thins your skin. I have dreadful scars from this and like some others on the forum never really given advice how much to use, I just get it on a repeat prescription.

I also have lichen planus down there which makes things worse. Have been on the same cream for years so maybe they can change it.

Kind regards to you all.

Hi Girls, I haven't written for some time, but have been reading all your news and tips, I having been on Dermovate for the past 2 months and tried 3 different types of Emu Oil, Tree tree oil, Epaderm , Paladin, also Emollient spray and a whole lot of other creams, I am no better, no change at all, still have the two raw patches...

However I have just got home from an appointment, at the hospital, The consultant I saw was very nice, and her opinion is that I don't have LS but have LP....and has put me on the waiting list for a biopsy . Have tried to read up on LP but not found the right site, so would very much appreciate it, if the girls with LP could give me any tips until I find out from the biopsy what is actually wrong with my undercarriage !!!!!

Hope today is a good day for you all......take care XX

Hi Lorna,

So pleased to hear your news, I know it's still not good news but it is, sorry I'm not sure if i'm making any sense, but I'm sure you can figure out what I'm trying to say hahaha. I've read that LP is horrid too, but it does sound like the outcome with LP is better than LS. I've not read to much about it but am tempted to investigate it a bit more anyway.

Glad everything went ok at the clinic, I'll keep fingers crossed that it isn't LS, & you must keep us posted. My appointment is in a couple of weeks & I just want it to be over with, I'm away on holiday next week & so looking forward to it, but will check in as & when, Best Wishes to you all T xx

Thanks T...I think LP is the lesser of two evils, but I don't know enought about it yet......I have been quoted between 8/12 waiting time for the biopsy...and in the meantime just carry on with the Dermovate. I am red raw today, but I think nerves and anxiety play a bit part in this condition.

Hope you have a lovely holiday.

Good wishes to all X

Hi girls LP LS it is all so confusing, I am still not sure what LS is, I thought LS was white patches in or around the vulva area and can affect the anus too, as least that is what my Uroligist told me when she diagnosed me last March. I do have a white area around the ureathra opening. But do not get any itching from it. As yet anyway. I do get a burning and stinging in my anus area but have no white patches. So not sure if this is LS also, I do get cystitis every 3-4 mths and she says it is because I have LS .. I have been referred to a gyny and he says to use the Dermovate as and when I need it but to be honest I do not really know as I don't get any itching only cystitis .wish we all knew more about this condition and it was easier to diagnose it , as reading lots it seems people take so long to find out whether they have LS on not, it is so difficult to know how deal with it as we don't know enough about it. Feel for you Lorna as 8-12 weeks is so long to wait for a biopsy then you have to wait for the results. Keeping my fingers crossed for you. Enjoy your holiday T and hope all is well at your appointment. Xx

Hi Lorna, Roselee & girls, Grrrrr, I have to agree girls it's so confusing, I did some research again yesterday after I read your comments Lorna about LP......& I now think mine is possibly LP rather than LS.

I read an item about Oesophagus Lichen Planus, which I found rather interesting, I have an Hiatal Hernia, & have a lot of problems with my throat, digestion, & bowel troubles, it all basically kept coming back to OLP, so I'm even more confused than when I started, but it all seems to come up with all the exact symptoms that I'm suffering with, even more accurate than my LS symptoms, So I will have to wait now until my appt' at the end of the month & see what they say, I shan't mention that Ive read up on it & see what they say & what they come up with.

The bit's I've read about LP are just as horrid as LS, I googled it & read the Wiki version & has to be said, some pretty nasty photos, but it's given me a better insight to it, so I shall read up a bit more, because there was more info on it than LS.

Lorna...you mentioned how you a red raw at the mo' I'm the same when I get anxious too, so maybe again their is a link.

Roselee, you say about the white patches, I have them around my back passage along with the itching (which has now eased thanks to the Dermovate), I don't suffer with Cystitis (luckily) but in total agreement with you it's all so confusing, knowing my luck, I will probably have both .

Thank you both for your best wishes for my holiday, which has been along time coming this year, If the weather in Wales is like this I'll be over the moon, lot's of walking & exploring planned , I will keep in touch, best wishes to you all T xx