Anyone with Lichen Sclerosus out there?

So depressing that the same things that happened to me 40 years ago are still happening to you. LS is still frequently misdiagnosed and undiagnosed.  The consequence of mistreatment of LS later in your life could be vulval cancer so don't just leave this. Get a diagnosis and treatment that you can be confident with.

I suggest you ask your GP to refer you to a dermatology clinic with some specialist knowledge or a vulval clinic where you can be secure in their advice.  Worst case go privately to dematologist with special interest in vulval disease.  BSSVD is the society for medics with special interest in vulval disease so a doctor who is a member of that should be a good bet.  Also try the LS patient support groups who could advise you on the closest specialist centre. 

Janet

howdy there,

i just got gp diagnosis confirmed by gyny at hospital yesterday, seen gp couple of weeks ago who referred me to the gyny who confirmed what she had thought, lichen whats its name lol, been using demowhats it called cream  for 2 weeks now ahh bliss itchy scratchy burny burny pain has eased off slightly, but noo i have to change my uber cool lifestyle fur one o careful washing, inspections o my naughty bits (thats gonny be interesting lol) never looked doon there before, no gonny be pretty i bet lol,

anyhoo the bit im dreading is the fact i may get that ol dreaded word starting with a c  (to quote harry potter " it that cant be named" lol, does this happen to everyone with ls or just some? really terrified re this aspect of it..

also have the same prob as some others in respect to getting shot of those big long brown things when need arises, now i know whats like trying to push a baby oot lol, how do you all manage to quell itchy, burny feeling when passing the brown things,

anyway to all going through the same hope you all feel well soon, im just starting my journey through hell :(  lol

howdy lizzy67,

ive had LS  since i was 23 i am now 60, it did not turn to vulva cancer till i reached 58, i went into my change at 51, and they say it can bring it on. but also not everyone , i have to say when i had the diagnosis it was o.m.g. but i had an op to remove it and very tidy it is too ,i can sTill have sex sometimes , which does make me and my husband laugh SOMETIMES!!!!.i do use epaderm ointment, it is brilliant you just slosh it on and it acts as a sort of barrier but also makes your skin soft and you dont itch so much ,after trying lots of things over the years this has helped the most and always wearing panty liners, the always ones, others has made me itch more .when i was younger with small children i didnt have any money so buying panty liners would have been a luxury, but the difference it has made to me is worth it ,if only i had known.,there are a lot of us LS out there as you will find out and everyone is different ,you have to find what works for you ,staying positive and not thinking about the c word is hard but you have to do it . i recommend epaderm ointment though its brilliant., also when i had it so bad i was scared to wee because it was so sore i went to a& e one desperate day and was given a numbing cream that was the best day of my life at the time so maybe your doc might let you have some lanocaine i think it was , good luck  it can get betterx

hi mexicomay,

ive had LS  for years ,and also went the rounds of different people ,creams ect.it is hell i know.once i was reffered to a dermatoligist things improved ,i also had some numbing cream lanocaine, i think so i could wee without it stinging , epaderm ointment is really good you slosh it on , wear panty liner always it has really helped me no one  suggested this until id had  LS for 18 years, everyone is different you have to try different things ,but seeing a dermatoligist who new all about LS IS THE BEST THING .also getting your feelings out on this site helps knowing your not going through it on your own x

Hi Everyone,  I have had symptoms of LS for years  now but never been diagnosed with it.  I am so itchy i can never relieve the itch, i make myself raw and bleed down below as i use toilet paper to rub relieve the ithcing......I went to see a consultant at the hospital about 4 years ago who said i had some white patches down below, she arranged for a biopsy but when i went back the white patches had gone and the biopsy came back all clear.  Now it is even worse, i have moved to another area and seen my new g.p., she took a look and said there were a couple of white patches,  she gives me Dermovate for this, i went back a couple of weeks later and again the white patches had gone?  I don't understand what is going on!!  I now have a second area that is itchy and sore all the time, this also bleeds because i can't stop itching, but now it seems to have moved to my back pasage and the area in between.....When i go for a pooh it feels nice because it seems to give me a couple of seconds relief from the itching if anyone can understand what i mean, but then it suddenly flares the itching up and Oh My God does it itch, i rub and rub with the toielt paper and my bottom is then raw and the top layer of skin has gone,  when i go to bed at night i lay there in agony, often too painful to even move but i'm sure lots of you can relate to this.  When i then go for a wee the stinging is agony,  its impossible to have sex as it feels like ive shrunk down below.  I can't even have a smear because my dr go no longer get the device inside of me, the pain in tremendous and i cannot have it done.  I also now have some bladder incontinence.  I have seen a consultant about not being able to have sex or a smear done and she feels its because i am past the menopause and i need some cream for down below, she reckons 3 months of this cream and i will be able to have my smear done.  My smears are very important as years ago i had the changes down below where the cells become pre cancerous and i am 4 years in remission from breast cancer.

Too me i feel like i do have LS because of all this itching and it is only on these two specific areas, but the colour changes keep coming and going so they can't diagnose anything if the colour goes back to  normal?  Dermovate really does help and it all heals for a short time, then its back with a vegance again.

Hi all, Honey bea,  

I never knew there was such a thing as a condition called lichen sclerosus until I came on to this site and I don't know if I have LS as I was alway embarressed about going and talking to my GP and thought my itching was many other things.   I know exactly what you are talking about though when you itch and rub with toilet paper,  I have itched so much  sometimes I have used a nail brush and rub until I have bleed. I have place ice cubes in flannels against the itch or burn to cool it. This itching I can go back at least 9 yrs. 

I read how you have all suffered and are just given cream and in some cases you are given biopsy or worse been found to have cancer. But why if so many woman suffer with this itching is it not discussed more.  Why are there no leaflets or posters in the GPs saying something like (DON'T SUFFER IN SILENCE).  Is it because the GPs are not aware of it? or is it really not that common?  If it was promoted more, then it may be discussed more openly, which would lead to less embrassement and perhaps as women check their breast, they check their vulva.

I will never ever think of my itch as just an itch anymore, but as a condition that can lead to trouble. But I do think women should be made aware of these conditions within the vulva area of their bodies. Like breast checks and smear test, just because something is rare doesn't mean it should not be promoted to be discussed. (Sorry Ladies will now get off my soap box). 

Ax

Hi,  OMG please do not use a nail brush, i can understand why but the damage  you can cause is terrible, plus the pain afterwards.   I am still itching like crazy, both back and front now, and perrineal area, ( can't spell it).  Its driving me bloody crazy to be honest, i may make an appointment back with my g.p. and ask her to check for me, which i hate doing but i can't see the area myself, i am overweight and i just cannot manage to see with a mirror. 

The thing us women have to go through in life, men get off so easily haha xx

I was diagnosed with Lichen Sclerosis 26 years ago. When I reached menopause, the Lichen Sclerosis became much more difficult to treat. The combination of protopic and clobetasol helped. 5 months ago, an ulcer was biopsied and Atypia and possible VIN were identified. The ulcer appeared to respond to Imiqunoud but unfortunately returned with a vengeance. It looked nastier than the previous one. The doctor who biopsied me a few days ago, said he was sure it is vin.  He doesn't think it's cancer but can't be sure until the biopsy comes back   If it is vin, the options are to use imiqunoud again but for 4-5 months and then re-biopsy.  The other option is surgical removal under general anesthesia.  The doctor feels that trying Imiqunoud first is the preferred approach. If it is cancer, I will see a gynocologic oncologist   

When I get a new white patch, I have been instructed to use clobetasol 2 times a day for 4 weeks instead of my twice weekly maintenance  dose.  if it doesn't respond I come in for a biopsy.  If it responds, it is Lichen Sclerosis. This cuts back on biopsies 

I'm 23 and have been itching like crazy for about 18 months now, right on the outside of my vagina hole and also up my back passage (not pleasant) Some time i just cant help but itch it and i get so so sore! I also feel like im really 'tight' when i have sex not to mention I've also just been told i have cysts on my ovaries causes huge amounts of pain!

When i first started itching, i hate to say it but i went straight to the sexual health clinic thinking i might have picked up and STI and at first they said it could be warts, so i was given treatment for that. TBH it did kinda work, but 2 weeks later i was back to itching like crazy!! It gets so bad and uncomfortable to even walk around the super market :( I had a biopsy about 2 months after i first started itching and it came back negative to both warts and LP/LS .... however the itch has never gone away.

I see the gyno no many times and i just get told 'dont wear tights, dont wear leggings, dont wear jeans' ... so what the hell am i meant to wear in the winter?!?! I also feel that everytime i go its like they cant be bothered to look into it and its never 'bad' on them days either, which is a pain in the ass!

I was booked in for a biopsy 2 months ago but they couldnt do it as i freaked out so much! i've had local local anesthetic 4 times down there now and call me a wimp but it hurts so bad :( and i just couldnt let them do it!! I so wish i has but i just was soo scared!!

I went back to see my GP a week ago and now im waiting for an appointment with a dermatologist to see if this will be any different. I hope so.

I suffer with anxiety and panic attacks so im constantly worried im gonna get cancer :( Really stuggling with this... need advice! 

Hi Jamie,

I've found wearing shorts instead of knickers :) helps, and i still wear jeans (I have to due to the job i do) has worked wonders, i still itch and burn but not as bad as i did a few weeks back.