Atrophy in Lichen Sclerosis

Hi. I've not been on this thread for a while. Nice to 'meet' you. I started with white edges while the rest stayed pink. But they just got smaller and smaller, both at the same rate until there was nothing left, despite being put onto Dermovate ointment from the start. My clitoris, the whole thing not just the hood seems to have begun a similar fate. I have been told to use Dermovate on it but I don't hold out much hope really. But I seem to be one of a kind on here. I know many people have experienced white back to pink with Dermovate so there's every hope for you. If you're not sure of the changes and wish to keep track then take photos to compare from time to time. Its so easy these days. Personally I can no longer bear to see the shadow of my former self. Good luck!

Barbara, I was undiagnosed and experienced atrophy and fusing while using nothing but soap and water. I can see now that the repeated flare-ups caused a cycle of scarring over the sore areas. Trying to have sex often even though my perineum would tear and I'd get yeast infections – that's what brought the atrophy. If I could turn the clock back forty years I'd be using the potent steroid ointment in miniscule quantities twice a week and I'd be taking care of myself in all the ways we're sharing here.

Thank you for the note on the potent steroid ointment in miniscule amounts.

Chrissy, maybe this is a word problem. Turning white means there's a lot of inflammation going on in the bottom layer of skin. My fusing amounts to disappearing genitals. My two inner labia, which were white and splitting in the folds, gradually stuck together covering my clitoris, making me essentially flat between my labia majora.

I understand all that Morrell honestly I do. We've had a similar discussion before I think. But I personally have never experienced any fusion at all. My initially white edged inner labia remained entirely separate throughout, each one just became smaller and smaller, more and more stubby until eventually there was nothing left.

I personally have never experienced any fusion at all. My initially white edged inner labia remained entirely separate throughout, each one just became smaller and smaller, more and more stubby until eventually there was nothing left. I understand that what has happened to you and many others has amounted to the same thing in the end. I'm not trying to make out that I'm alone in what I've lost or in my distress about it only that I've not found anyone else who had it happen in the WAY it did to me or in the way my own LS continues

I understand. So, can you have sex comfortably?

You mean penatrive sex? I reckon I could if I chose to. Vaginally I'm fine for now at least, no fusion so nothing's closing over. But my clitoris is shrinking now and I'm so self conscious about it I choose not to have sex. And to reiterate that's not fusing either just minimising. Weird!

Hmmm, so it looks unusual but everything works fine. If I sound like I don't understand I think it may be because I've been pretty flat since my twenties. I think maybe you haven't had all the itchiness, soreness and fusing because you haven't been having sex. I think my LS has gone as slowly as it has in forty-odd years because I've had two seven year periods of no sex.

No it's fine, I have a lot to be grateful for I know. I know there are many people on here who are really suffering physically. Mentally too of course. I read everything but don't say much because I know I'm not as bad and because I can't contribute as my experiences don't match up. So despite all the tremendous sharing on here and amazing people who's stories I follow I still feel alone in my particular problem and am struggling to come to terms with the change in who I am

Hello Morrell1951,

I have had no sex in many years as I got a divorce and don't believe in sex as a single (for me) but have itchiness, soreness and fusing.

My genital area is a mess, nothing normal about it and waiting to see a gynaecologist to hopefully get urgent treatment. The inner labia has fused and disappeared the vulva is all but covered over - and I'm in shock.  Have only just discovered this - I don't look down there - and I guess I need to much more often to check things out.  Its excruciatingly painful to wash and feels red raw.  Hope things get better quickly for everyone, honesty. 

Once you get treated and start being aware of it, things will improve a lot. Most of us check with a mirror every day or two. First thing, if you haven't already addressed this, is drastically reduce the amount of sugar you eat, including fruits and juices. LS and yeast have an evil partnership, but mysterious and variable. This can make a quick difference while you wait for the prescription to get the inflammation under control. Have you watched Dr. Goldstein's presentation? It's linked in the top topic posted here – "New to LS? Start Here"

Glad you found us. LS is annoying, but the worst aspect once we get it under control is that sex can make it worse. You and I aren't worried about sex, so life can go on in comfort – soon!

Well now you have found someone who it happened to in the same exact way. Me, and I don't have LS, I have LP.

Lost everything down below with no symptoms for years. Shrunk, vanished, disappeared. Little stubs became tiny and clitoral hood gone.

When the burning and lesions appeared last year was diagnosed with LS by biopsy. Wrong, as a specialist soon told me. Lichen Planus is what I have.

Pretty well the same treatment though. Realise this is an old post, just struck by the identical initial symptoms.

Now I have burning, pain etc and open lesions but never any whiteness. As well as steroid use I use tiny amounts oestrogen alternate days to tight band of skin at vag entrance, clitorus and urethral opening. My clitoral hood has appeared again along with small buds of inner labia. 

Strange and irritating disease. 

Hello Lynne. What a coincidence that this thread has seen no action for over a year and then I hear from 2 new people within a couple of days, you and Christine12255. Since I last wrote on here my clitoris has all but disappeared too so that's really interesting and yet yours turns out to be LP instead. Wow! I'm still lucky enough to have no symptoms, no burning, pain or lesions like you. I'm so sorry to hear it - hopefully now you have a correct diagnosis you can be made more comfortable? I STILL believe that I have NOT lost my labia minora and clitoris through fusion. I don't have the band of skin at my vagina entrance that you and others have mentioned, I don't have any urethral entrance problems and although I was given a set of dilators from the beginning of my condition I have always been able to use the largest size easily and still can. But I am fascinated to hear that your clitoral hood has reappeared also buds of inner labia! That would suggest you actually did lose these through fusion which is now releasing do you think? What do you think has caused this development? I really hope that continues for you. Thank you so much for getting in touch. PLEASE do let me know.

Hello Lynne. What a coincidence that this thread has seen no action for over a year and then I hear from 2 new people within a couple of days, you and Christine12255. Since I last wrote on here my clitoris has all but disappeared too so that's really interesting and yet yours turns out to be LP instead. Wow! I'm still lucky enough to have no symptoms, no burning, pain or lesions like you. I'm so sorry to hear it - hopefully now you have a correct diagnosis you can be made more comfortable? I STILL believe that I have NOT lost my labia minora and clitoris through fusion. I don't have the band of skin at my vagina entrance that you and others have mentioned, I don't have any urethral entrance problems and although I was given a set of dilators from the beginning of my condition I have always been able to use the largest size easily and still can. But I am fascinated to hear that your clitoral hood has reappeared also buds of inner labia! That would suggest you actually did lose these through fusion which is now releasing do you think? What do you think has caused this development? I really hope that continues for you. Thank you so much for getting in touch. PLEASE do let me know.

Hi Chrissy! Nice to hear from you.😀

It's a very strange and complex condition isn't it, the old Lichen?

I have no idea why my bits are making a reappearance. They didn't melt in that way that LS ladies described, they shrunk away as you described.

Having said that, the gynaecologist I saw initially was adamant I had LS because of the 'classic' non labia and clitoral hood.  To be honest I had given up sex years before due to discomfort so had no idea what my clitoral hood was up to!

But after I came on line to this site to have a moan and get support from the women here (fabulous!) I  realised I didn't have any white skin at all, no itch at all ever, no anal involvement. Just a couple of lesions and burning of the whole inner vulva. So I found a dermatologist because the Clobestasol was too much for the lesions, then she told me I have LP as soon as she looked at my undercarriage. I had to take big doses of prednisone to tolerate the steroid cream and to this day I am on a maintenance dose prednisone and cannot tolerate Clob but use Mometasone, a much weaker steroid. 

I did get lesions in my mouth and panicked a month ago, went to an oral surgeon for a biopsy etc and turned out it wasn't OLP but ulcers due to stress and because I was very run down due to rapid weight loss. It's not to say I won't get OLP but thank you God or the universe for sparing me for a bit longer!

my symptoms are so mixed in some ways that I actually wondered if I had both LP and LS, I suppose it could be so? When my painful symptoms began last year I definitely had a tiny nub of the right side of my labia still there and over the next two weeks it burned and throbbed unrelentingly and day to day I could see it bright red and shrinking down until it was gone. It was horribly painful, like a toothache that never lets up.

Things are definitely better in the last two weeks after eight long months. At the moment I have stopped all emollients and creams except the steroid, on the wise advice of a member here. EVERYTHING was aggravating  the area and I have a pharmacy on my bathroom shelf lol ... So now I use nothing at all, just water to wash after a wee. 

I was very depressed and confused for a long time but am starting to think I do have a life to live and I'm not an invalid, which I had convinced myself I was.

I honestly put the fact down (re my bits appearing again) to accidental use of oestrogen which I applied to urethra and tiny paper cuts around my clitorus and the cream has transferred to skin around  there. 

There is is a web site which I actually don't belong to now in which the members follow a firm protocol of using Oestrogen and testosterone for skin regeneration to get their lost bits returned. It's quite involved and a doctor has to be totally on board and to be honest I was just trying to breathe at the time!

just a thought though ..

I love this support group.  I don't think anyone else  has LP vulva but treatment is v similar and I get a LOT from it!

This is very long, sorry. Hope you continue to have mild symptoms

thank you for your interest and good wishes.  Lynne 

oh, and the reason I was even using oestrogen was because I have a slight prolapse and at times a tiny bit of urine leaking and burning my urethral entrance, also gynae thought beneficial to the tight band. It totally worked too. 

It's certainly something of a relief to me to hear you describe 'the shrinking away rather than melting'. I seem to have had a hard time getting that over to people  and had stopped trying. In fact I'm not ashamed to say I had watery eyes just hearing from you. Goodness I'm starting again now! I don't know why it's so important to know that someone else 'gets' what you are saying but it is. I've never had itching and no burning or lesions either but I did have whiteness. Not patches exactly just lines, the edges of my labia minora when I had a full set. That was the only thing that alerted me to something going on. Then it was as if the white lined area simply wasn't there any more so now the next edge was white instead and so on getting continually shorter until there was nothing left at all. Once it had nowhere else to go down that route it started on my clitoris. Now there is little of that to go I do wonder where it will go next. But here's the thing - people on here say that although it won't cure LS the Clobetesol will help manage the irritation and fusion. I don't have any itching so don't have an awareness of a need to reapply. I was told to use it anyway a couple of times a week, that word maintenance. But my parts just continued to disappear at a steady pace. I truly don't think it would have been any different if I hadn't applied it at all. And I'm still doing it. Each time I ask myself why I am doing it. It isn't stopping anything and I don't NEED soothing. Each visit to GP or consultant I question this and they always tell me it's best to just keep it going. As its not actually CAUSING me any problems either as it does with some people including yourself I do just keep it going. Oh well! I go round in circles on this.

I'm fairly sure people on here DO have vulval LP, I'm sure I've seen it and also that others have both LS and LP. I hope other similar sufferers will make contact with you. Why don't you start a new thread about that as this is such an old thread that the old hands won't bother with it. You need to share with others like you and a new thread appropriately entitled will draw them straight in to you.

There are still a lot of differences between you and I but just the fact that you knew what I meant about how my labia went meant so much to me. And thank you for that thought - thinking ....... 🤔😀

Thanks Chrissy, you're lovely! 

I have actually mentioned on the site that I have LP and people are very supportive. We have lots in common, mainly that it effects our downstairs bits and is so private and awful that you don't want to tell the world. Well, I don't and some others don't. There is a lady on another site who has it and we correspond a little, mainly I ask her stuff and she tells me what she does to help herself. I'm newly diagnosed and she's had it years. 

 If you are the Chrissy who has recently posted about your Mum, bless her and you both and hope things are resolved for her soon re the products she needs. 

Best wishes and good health! 

Ah yes that was me. There are a few of us Chrissy/Chrisy/Christines about aren't there! Still not sure if mum has LS but we'll see and all the stuff that helps us will help her anyway.

So now you know you have LP rather than LS, can that cause fusion too? I'm still thinking about how you're getting a bit back but that you lost it in the first place due to LP rather than LS. It causes the same kind of losses? I admit I know nothing about LP.

I do often feel very torn with this condition - in my head I mean not tearing of my bits, tee hee. On the one hand I can't bear to look at myself but on the other I know I should/must. Again on the one hand I feel I should broadcast  to as many women as possible so they are aware for themselves and I should be evangelical to make doctors and consultants take this more seriously but on the other hand I really don't want to talk about it as regards my own private body.

Hey ho! Glad you have support.

Best wishes and good health to you too!

I only know what happened to me really. Am 70 and though I would still be having sex with my lovely hub it has been sore and uncomfortable for years so we just have cuddles. Noticed a few years ago when putting oestrogen on that was not much there so had a look and had smaller labia minora than I used to. Kept an eye on them and they just shrunk into little nubs. Thought it was age! 

To tell the truth my specialist dermatologist diagnosed me from pictures on google and textbooks so they know nothing really. Just gave me the clob and said use this, see me in three months. That'll be $320 ...next....

my new GP is brilliant! She did loads of research and her husband is a skin specialist so she put me on to mometesone cream no alcohol and finally I got some relief. Clob burned burned burned me and I was forced to keep taking it for months, being told it's the ONLY treatment.  sigh 

Goodness knows why my bits are regenerating, it's quite an irony, cos I don't actually care! I would much rather lose the lesions and burning.  And yes, they are not only emerging from the point they disappeared but there is a fine raised line along each side from clitorus to half way back towards perineum which seems to be the beginning of folds. If that's so then there was obviously a 'melting, at some stage years ago but I never really looked at myself before this year! Quelle horreur, now I seem to do nothing else lol 

You are so like me Chrissy because I was so outraged about the lack of information I wanted to be interviewed, write an article, go on TV, lead a crusade for all the women involved, but the other cowardly part of me didn't want anyone to know, they would look at me and see nothing but a strange and raw looking vulva! 

Ah bless you and lol also for some of that. I completely understand that your priority is to mantain your comfort levels. I've always tried not to make a fuss on here because I am aware that others are so much worse off than I in terms of living with discomfort and that that word doesn't begin to describe it for some people. We all have our story to tell and despite similarities and differences we are ALL linked by this outrageous attack on our most intimate body parts. I still lurch between despair, acceptance and anger regularly.