I've had LS about 2 years. I'm really lucky when I read the experiences of others as I don't have any irritation and don't really know I've got it on a day to day basis. My inner labia simply developed white edges. Consequently I haven't bothered with the cream I was prescribed. What is worrying me is how my inner lips are receding. Everything I can find on line seems to be about coping and soothing the itch which is understandable as it must be horrific. But I can find nothing about the atrophy part of LS and I'm really freaking out now. What happens if it keeps going until there is nothing left? Will my body continue to atrophise (if there is such a word) into me if you see what I mean?! I'd just be grateful to hear of someone else that this has happened or is happening to.
I realise this reply is quite a few months after the question but I hope it will be of help. I had redness and sometimes soreness but no intense itching like other people have experienced. I went to the doctor and she said she thought it was lichen sclerosis and I had to see a hospital consultant. He took a few biopsies which I thought would settle it but when I saw him later he also said the THOUGHT it was LS. I had been given some cream to rub on but it only made it worse so I just used Sudacrem when needed. The thing I didn't realise was that it made my "bits" fuse together, meaning down each side not across. I now only have outer lips,my inner ones having fused to the outer ones. Apparently it can be much worse than that as you can end up with a hole that's not very big and have to use things to stretch it but thankfully I haven't got to that stage and hope I never will. Were you told that you need to get it checked out every year as women with LS affecting the vulva are at increased risk for developing squamous cell skin cancer?
It's a pity that there isn't more information about this condition. We're forever being told about checking our breasts or having smear tests but this never gets mentioned so women must be going about blissfully unaware that they may have a condition that could turn out to be quite serious if not regularly checked. I have made an appointment to see a doctor next week so he can have a look, rather embarrassing but has to be done! I hope this is of some help.
Hi, I have just read your comments, I also have skin atrophy around my vagina. My specialist put me on Ovestin Hormone cream which helps to restore the skin, making it not so thin,I also use steroid cream, a little each day to keep the LS in check, Ido feel sorry for people with the irratation like you I have never had that, I count myself very lucky. I wish you well and good luck!!!
Hello Spindles and Mary Rose. Many thanks for replying. A year on and I now have no inner lips at all. They have not fused just simply disappeared. I still worry what will happen if the condition carries on trying to recede now there is nothing left. I use steroid cream although I'm not really sure why as I have no irritation to sooth and it hasn't exactly stopped things happening. I do realise I have to keep an eye on things to watch for cancer.
Spindles I don't think the Sudafed will have caused your fusion, its just that fusion happens for some people. Like you I now have only outer lips just by a different route. You are so right about more information needed out there. Every woman that I've spoken to has had no idea that such a thing existed, as didn't I before I got it.
I DO count myself lucky to not have the irritation or (so far) fusion to what's left of me. Nevertheless I am embarrassed by what I now look like and consequently my previously active sex life with my husband of 30 years has come to an abrupt halt. He is supportive and wonderful! But it is so sad and I believe the effect on me mentally is far worse than (again so far) the physical.
With every good wish to you both X
Hi i am new to this page and so pleased that I have found it as I feel so alone, i can relate to all of what you are saying I have had this horrible condition for over three year( but suspect that I have had it for over 20 years!!! ) I also have horrible patches over my body that none of the creams seem to help, I have tried emu oil and propilis cream as well as all the creams that my gp has prescribed, the patches on my body are getting worse and more are appearing and spreading, I feel like a freak
they started under my breast and around my side where I think underwired bras may have dug in( I now wear bras with now seams or wires) they patches seem to start were there is constant friction or pressure. has any one else got these patches as I can't find anything on the internt. I see the specialist at the hospital again next week but she only seems to be concerned about anychanges in the genital area as this is classed as pre cancerous but these patches are just as distressing and seem to be taken over my body .
Hi Vicki04,
Sorry to hear you are so distressed, I tried a cream called Perrins Blend you can read about it on the Internet. When I first used it it was amazing the big red whells went away,my specialst was amazed it did come back, but I feel it was not for me , but who knows it might work for you. Take care.
Hi mary Rose thankyou for your reply I will look into the cream you have mentioned.
Does anyone else on here have the patches on their bodies as I have mentioned in my first post ?
Hi everyone, it is good to have found this forum. I am 58 years old/rather over weight (3 or so stone) live in western Britain on the coast.
There seems to be a hereditary element to LS. I've been having problems for about 4 years and the only thing which has helped significantly is Dermovate cream - the strongest steroid cream available, the use of which doesn't fill me with confidence. Chatting to my new GP recently he said that at a conference recently all experts had come to the conclusion that this was the only really effective treatment. There is just so little information regarding sufferers and possible patterns of habits/lifestyles etcetera. Someone mentioned above that they could no longer eat oranges for instance and I believe that my penchant for Earl Grey tea has caused me some discomfort (citric acid and the bergamot oil in Earl Grey is related so I've heard). This does not mean that it causes the condition, but may be an irritant.
I broached the subject with my 94 year old mother and she said that she wasn't aware that he had any problems but that sometimes she had scratched herself to the point of bleeding (this leads me to believe that it is a condition which is coming to the fore as something which been regarded as natural ageing, and which is actually very common but should be dealt with rather than shrugged off).
I was was a close friend of my GP before she retired and she told me that out of the group women who were in the waiting room who were waiting to see her, MOST would be seeing her for this condition.
If it is of any comfort and can alleviate some of the anxiety I was certainly feeling, I believe this condition is actually quite common. Certainly it is in this area. I think we do all need to compare some notes as to age, diet, weight, anxiety itself, problems with alimentary tract, where we live and how we get our water etcetera etcetera. I have IBS for example, drink loads of tea.
Only if we can see patterns can we understand if a change of lifestyle might affect the condition and it does not seem that anyone has done much research on this.
Does anyone think the same way as I do?
vicki04 I don't have similar patches, but I remember my aunt having some below her breasts and this may be part of the hereditary thing.. There may be some problem with your skin's reaction to sweat.
One thing I have found relieves any discomfort apart from steroids, is Salcura Intensive Skin Therapy spray. It does not cure anything, but seems to take your mind off it, which for me is a big thing.
Could everyone quizz their doctors about how many of their patients are presenting with LS and is there any common factor thy've noticed between them
best wishes and try not to be too disheartened
Hi late to join the discussion but have been active on other threads here to do with LS. I too don't really have any itching, but one of my inner lips has disappeared completely, the other one is now disappearing too. My clitoris is almost non-existent - I thinks it's there but it's playing hide and seek. My aunty has this. I believe my mum has it too and has only just started talking a bout it after I've told her all that I've been going through. She has the itch and is very red, although she isn't suffering with atrophy. I had a biopsy about 7 half weeks ago and am still waiting the results! Whilst I hear what some of you are saying about the increased risk of cancer, |I did read somewhere that it's not the LS that causes the cancer, it's the scarring from itching and ulcers. Anyone else read this?
Hi All, yes I have read that the scarring is the thing that may cause cancer, I also believe that it is very rare and not the norm. Apart from having LS I also have exzema with LS, but still no irretation, the hormone cream does help repair the skin atrophy, I also use E45 shower cream for inbetween my legs and Sanex 0% for the rest of my body, I have found this does control the beast!!!
Hi guys,
I'm also concerned about atrophy. One thing I'd like to know is if scarring only occurs if you scratch the area, or does it happen on it's own? I have mild LS but this is playing on my mind a lot. I'm finding myself looking at the area all the time and trying to check for scarring - not entirely healthy I know"! ChrissyC - have you tried using Emu Oil? It's pretty good as a complement to your steriod cream because it moisturises very deeply xx
Hi Everyone, I am 65 and have had LS for about 4yrs.I think the scarring is caused after a very bad attack, I don't think scratching helps, but maybe not wholey responsible.
Morning Ladies, I'm 46 and have being diagnosed in the last month with LS, I've been "Itching" & "scratching" for about 3 years & got to the point that I was not going to leave my Doctors surgery until I had a proper answer for my symptoms.
Mine started around my back passage initially which was causing chronic constipation, I was even sent for Botox injections into my sphincter muscle so that I was able to pass a bowel motion. Which worked for a short while. My Doctor at the time noticed that I had very heavy scarring around the area at the time, but know more was ever said or mentioned, I just put it down to tearing due to the constipation, I was no doubt wrong.
So here I am 3 years on, awaiting an appointment for the Vulva clinic, using Dermovate & Emu oil like everyone else. Which is helping, the itching has finally stopped & i'm managing to sleep again. I've been coping quite well up until the latter part of last week & now i'm beginning to feel pretty fed up. I feel so dirty all the time even tho' I shower twice a day. I was having a very healthy relationship with my partner until I found out exactly what the problem is & now I just don't want him to touch me because of this un-clean feeling. It's not affected me in the bedroom department until now. My partner has been so good, he had a "blip" 2 weeks ago but has been my absolute rock since. Which is a godsend because he is also my best friend too.
I haven't discussed it with any friends or family because I just feel I can't, so finding this web-site & everyone's post's has helped me. When my Doctor told me it's quite rare I was mortified & felt so alone. But this has been quite a tonic to know i'm not alone, & maybe it's actually more common than everyone including the medical profession are aware of.
Thanks for all the info that you have posted, it has been a massive help especially to all us "newbies" out there that are frightened out of our wits. T xx Keep up the good work girl's.
Hi, So sorry you are feeling so down, I think we all do when we first find out that we have LS. remember it's very rare that it does turn into cancer, just take care of it. Maybe two showers a day is a bit much, tends to make the skin more sensative, Try one shower a day put the Dermovate on and try to forget it, you have no reason to feel dirty it's not an STD it's just a skin condition. You will learn to live with it and just get on with your life, when you have sex use lots of lubrication that may help, if you were enjoying sex before you new you had it it should be fine once you get your head around it,it will all come together in time. Take care.
I DITTO LS Sufferer,s last comment, I was only diagnosed a few weeks ago. Without you girls comments, I think I could have thrown myself off a cliff. I think once I get my head round it, and knowing I am not alone,
And learn what ointment suit my skin or lack of it, then it's just a case of learning to live with it.
I too am waiting for an appointment at the Vulva clinic....
Hey LS sufferer,
I empathise completely with what you're saying - it's such a horrible feeling when you're first diagnosed. You feel lost, hopeless, you name it. The fact that LS is such an 'unknown' and mysterious condition only makes things worse! All I can say is HANG IN THERE - things will get better and the medication will give you relief with time. Stressing out can also make flare ups worse, so if you can, try to relax as much as you can. That sounds awfully patronising and it is hard to do but with time things will improve, as Mary Rose rightly said. Regarding sex, yes, use a lot of lube and if it hurts, never force yourself! If you're after a good lube, try yesyesyes,org. Expensive but natural and works well.
Remember if you ever need any advice or anything us ladies are here for you! We're all in the same boat xx
Morning Ladies, Thank you all for your VERY reassuring comments 
. It made me feel so much better knowing that your not alone...In the bedroom department thing's are still working quite well, & not to many problems & when it happens it really is still fantastic, sadly it's this un-clean feeling I just can't seem to shake off which is causing me the problems.
Mary Rose, you suggest showering once a day,...I will definitely give that a try, I've been using Dove soap & E45 shower emollient, but you just don't get that lovely clean feeling like you do with your favourite shower gel I find .
Lorna....I can relate to how your feeling too, I've been Using Emu oil which has made a big difference, & for my open sores & tears I used 100% pure Tea Tree oil, my sores healed literally within 48 hours which has made a massive difference for me being able to cope better.
My inner labia has completely disappeared, and I have a large "rough" patch of skin on my left buttock, & large white patches on my skin near to my back passage & just above my clitoris.
I think it's the fear of not knowing where this can all lead really. I would love to be able to a££ord the stem cell treatment, but I want to see what they say when I get too the clinic & maybe go from there. I would have to have a loan, but I would certainly consider it.
I need to make another appointment to see my Doctor as I may possibly be suffering from under-active thyroid...Even in the current heat wave i'm cold, my hairdresser is concerned about the volume of my hair loss, & a few other problems that are possibly connected to under-a- thyroid, so i'm hoping to get that sorted today & ask for a blood test, just so I can lay another theory to rest.
Oh the joy's of aging !! 
. Girls thanks for your support, it really is such a big help . T xx
Hi T, We are all here to help, any questions just ask, have a good day. J xx
Hey everyone, what a lot of people have joined in since I last visited. When I first posted I didn't get a reply for almost a year so I'm so glad others of you are getting support as you need it. Such a lot has been discussed in my absence that I wish to add to so I'll try not to get them and you all mixed up.
Vicki04 I do not have patches elsewhere on my body but I DID read of others who do in my research so you are NOT alone.
Margaret289 & bluelady I have asked my mother and she has no problems. Like most women she had never heard of such a thing so my hereditary trail has gone cold.
Mary Rose you are definitely right that the cancer is rare - just something for us all to keep an eye on but not get too hung up about.
Emma84 I'm not too sure about scarring I'm afraid as it's not within my experience. I'm not sure if I would rather still have something left TO scar if you know what I mean but that's crazy talk I know. Everything is relative to each of us isn't it. Anyhow thanks for recommending the emu oil, I see others amongst you use it but I have nothing left worth moisturising. Not sure why I still bother with the Dermovate.
LS sufferer I feel for you with your unclean feeling. Mary Rose is so right with her advice to you but I think the way you feel is akin to my embarrassment about how I look to my partner. You feel dirty and I feel a freak. In other words we are both reacting mentally to the condition as well as all the physical symptoms. I'm sure everyone is of course with depression and so on, I don't mean to infer otherwise.
Everyone PLEASE try and tell other women about LS if you can possibly bear to. I haven't yet found another woman who knew such a thing existed and all women should be keeping an eye on themselves so they can react quickly and reduce resulting effects if they start with it. Margaret289 is SO right about information needing to be gathered, patterns noticed etc which can only be done if we all discuss our experiences.
With that in mind I must concur with LS sufferer in that you may well have an underactive thyroid. I have. I also sound a similar age and weight to Margaret289. I have type 2 diabetes. My consultant at the vulva clinic told me that she firmly believed that LS is part of an auto immune problem SUCH AS under active thyroid causing the body to reabsorb eg its inner labia. It is DEFINITELY NOT rare, is very common and they have more referrals than they can cope with. There are NO specialists in LS, vulva clinics get the referrals as they are the nearest thing! She, the consultant, believes it is because Gynecologists tend to be men and they are not interested in this for potential research! We MUST get the weight of the experiences of as many as possible out there in order to convince that the research is needed and valuable!
Thankyou all for the information, I saw my consultant two weeks ago the Dermovate seems to be keeping the valve area under control although since my last visit my Labia has disappeared and my clitoris has almost disappeared so only keeping the soreness under control, I have a a flare up every couple of months mainly splitting around my back passage and sorness around my clitoris area so I keep reapplying the Dermovate,. The consultant really is not interested in the patches that are appearing and spreading on my upper body as she said they are not classed as pre cancerous, she did prescribe some steroid dressing that you leave on 12 hours at a time for a couple of the patches which are really bad.but said that it will not heal these patches, I as yet have not tried this as I worry about using even more steroid creams, I said I was trying some natural creams etc but she said try anything but skin can sometimes react to these type of creams , but basically said that its a case of just seeing what suits and helps as what works for one doesn't always work for another. which is also what my gp said, so I still feel im not getting a lot of support from either of them I think it is just that its a condition that really doesn't seem to have much research and the dr's don't seem t have much information on the condition, there is a homeopathic dr at my surgery so I may try and see if he can suggest anything, I have yet to find anyone to speak to that has the sore patches on their upper body. My daughter spoke to her gp awhile ago about me having LS as she gets a lot of boils and sores in the valve and back passage area (which is a different medical problem cant think at the moment what its called) she was worried she may have LS as well and her gp said its not hereditary but reading some of the thread it looks to me as it might well be .
I hope all you ladies are keeping this horrid condition under control. we are definitely not alone!!!.