Atrophy in Lichen Sclerosis

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!!!.

Hi, I'm 48 & I have been suffering with Lichen Planus both orally & vulval/vaginally for many years. It started orally about 14 yrs ago then moved to my vulva. I was originally treated for thrush but after the swab tests were negative my GP didn't know what it was. It was only when I moved & had a new GP that I was referred to a fantastic Dermatologist. By then the LP was also in my vagina which caused bleeding with penetration. I was prescribed Dermovate cream & prednisolone suppositories to be used at pessaries & was that area in Dermol 500 lotion. I then moved to France where they would not precribe the prednisolone so i just use Dermoval cream daily internally & externally & have to see a Gynae every 6 mths to a year. I'm well over due but can't face going. My laboria minor have all but disapeared & I still bleed from time to time. This is exacerbated bu the fact that I had a hysterectomy about 7 years ago & started experience menopause sysmptons including vaginal dryness about 2 yrs later so I've been on Estrogen only HRT since then. There is no treatment for the oral LP as it's impossible to keeps cream on your gums as they are naturally always moist. I was once given a horrible cream that resembled the consistency of peanut butter combined with vaseline, I had to dry my gums with a tissue & spread this muck on morning & night but as it worked it's way down onto my teeth & made teeth stick to my inner mouth I only used it at night. here in France I haven't been offered any treatment, my dentist says there isn't anything. I just count myself lucky that I don't get in on my skin, although that is more easily treatable I suppose.

Good to know I'm not alone, I hope it's not hereditary as i don't want my daughter to suffer this.

Hi Nikki2203. I think Planus is different to Sclerosus isn't it? From my reading I believe there is a better chance of it clearing up eventually. I certainly wish you well!

Vikki04, when you say your clitoris is disappearing, do you mean it is fusing over and becoming hidden or do you mean it is actually shrinking and disappearing as in atrophy please?