lichen sclerosis

I have this condition and there is mention of it being linked to my underactive thyroid.

I have started coming out in some boil like spots which appears to be "Hidradenitis Suppurativa"

So am questioning if it's an auto immune disease of some sort?

Any advise would be gratefully recieved

Hello ladies - or gents, as the case may be!

Just back from holiday and overjoyed with the wonderful cool weather over here. However, it was very nice wearing skirts over there and this is definitely more comfortable for LS (or LP) sufferers. Welcome to all the newcomers by the way! One of you ladies was suggesting warning others about this disease, but I find it a subject very difficult to discuss, even with my nearest and dearest. I think it must be pretty rare, as so may of the doctors have no idea what LS is all about!

Still haven't managed to get a good view with a magnifying mirror. Was never any good at crouching!!

Horses xxx

Hi, glad you had a good holiday, I'm off next week.

I have talked about it to 3 friends, 1 cousin , who was a nurse, and a sister, none of them had heard of it, surprise, but my sister had LP in her mouth a few years ago. I just mentioned the name and gave an overview and suggest that they have al look on the Internet. I find I use very " twee" words to get over the embarrassment, but all said thank you for making them aware.

I am not too bad at the moment, most of the soreness eased off for now, trying not to look obsessively every day!

Cheers to all. X

Hi Polyanne,

Hope you have a glorious holiday! Make sure to take all the creams and oils with you and you'll be fine! I know exactly what you mean by "obsessive" as this is how it takes you, but I suppose you gradually get used to living with it.

Enjoy your break, xxx

Spoke too soon, flare up this morning, not too bad luckily just very uncomfortable, great fun when motor homing!

Hi Girls and Guys. Thought I'd give you an update as I haven't been on forum recently, although I do read what's happening to you all. As you know I went for my biopsy back in May and it came back as LS free and diagnosed as Mild Non Specific Chronic Inflammation. Everything has been fine down there and I am still carrying on washing with Epaderm and using Vagifem every 3 days and Ouvestin (Oestrogen cream) every three days aswell. So I went for my check up today... I went in on a 'high' and came out very disillusioned and on a bit of a 'low'.

When I was called in it was a new doctor, one I had not seen before. She had my file in front of her. Conversation went like this: Hi I'm Doctor "£""". So, you first started coming to see us back in May this year. No... I've been coming here for around 18 months. Ah have you? There doesn't seem to be anything in your file. So, you have Ls then? Err No not proven no. I had a biopsy back in May which came back with Mild Non Specific etc etc. This is a check up. Erm... let me look in the file again... No I can't see anything in there about a biopsy. The last letter in there is to your GP confirming LS. Yes but I disagreed with the diagnosis and after seeing three different GPs who all thought it was vaginal atrophy I asked for a biopsy to confirm one way or the other. Erm. Okay, go back to last year and tell me what's been happening ... I do wish someone would just do the filing properly blah blah blah AND SO IT WENT ON. She finally looked on the computer and found the results of the biopsy etc. I was then examined and she said .. Well this could be the start of LS we never know really, so do what you are doing and what was the name of the cream you are using? Ouvestin. Can you spell that for me!! And to confirm, this is an Oestrogen cream then? YESWell as I said, check yourself often and if you see any changes, for example white patches I want you to use the Dermovate twice a day for 3 months then as and when you need to. Okay I said.

I think we'll do a blood test too as sometimes this is associated with auto immune system. But I had a blood test for liver, thyroid, etc etc not long ago. Well there's nothing on the system and we've got nothing in the file so I think we should get this done. But it all came back negative last time. Well we'll have one anyway for our records.

so I left, feeling very disillusioned, very deflated, disgusted that it was another doctor who knew ABSOLUTELY NOTHING about me or my case history and to have no records of the last events in my file DISGUSTED.

I left the hospital, rang my gp who said I'd had a full blood test back in May before the biopsy but they're willing to do it all again if there's anything they missed ont he form the hospital have given me.

I really wonder why I went this time I really do!I

On the brighter side I am managing to have sex with the husband using shedloads of Yes oil based lube and lots of patience and as I say I check down there on a regular basis and am quite a contortionist.

Wishing you all peace and health xx love Blue

Sorry forgot to mention... haven't had the girly night yet as with all summer holidays and kids being of school for some of them I've not managed to secure a date when they're all around - but it will definitely be happening soon and I'll let you all know how it went.

Been reading about Vagifem and discharge some of you have been having. I use the Vagifem in a blue applicator it's like a small tablet - doesn't give me any discharge at all, so I don't know if its in pessary form and that's what people are using? Give the tablet in the applicator a try ... I thankfully don't have problems with it.

Blue

Hello everyone, back from my trip so thought I would update my status.

Blue what an awful experience with the doctor, it' s bad enough having to bare all without that sort of hassle thrown in, but good news on the marital relations side.

I was very sore for much of our trip and went to the doc last Fri. She now recommends a consultant for a biopsy as she's not quite sure if it is LS. I 've got an appointment for next Sat at the Nuffield, with a gynaecologistluckily I am in a health scheme. Of course though now things are fine, all better at the moment so hope there is something to show him or it will be a waste of money.

Whilst away I met up with my other sister and guess what? She has suffered with what was diagnosed with LP down below a couple of years ago. That does suggest to me that it may run in families in some form or another. Bye for now, keep well.

Hello all,

I have been told last week that I have Lichen Sclerosis however I have not got any itching, redness or lumps that some people describe. Does everyone get theses symptoms or there people out there who are symptomless? I have been told to use the benovate cream for a week applying twice a day and then hydrocortisone for 4 weeks, once a day. I will have another appt in 2/3 months when a biopsy may be taken. My symptoms are that whenever I have intercourse the skin around the opening to my vagina seem to rub off leaving me very sore and a couple of days after the skin looks like mouth ulcers as it's healing. Apart from that I have no other symptoms. Please help.

Hi Sam, yet another manifestation of this weird disease, I wish I could help but we are all struggling to make sense of it. I just hope that the treatment helps you.

My latest news is that I saw a gynaecologist last week and he says he can't see any sign of disease and to him I look normal down below for a woman my age! Apparently the shrinking labia and clitoral hood closing happen with age. He did say that the Dermovate could have done its job and cleared it up, he is prescribing an oestrogen tablet to try and counteract the dryness/discomfort. I know that I haven't dreamt the soreness and my GP saw something so all I am hoping is that the improvement lasts. The gynaecologist did say that if it returns I should maybe see a dermatologist as I have suffered from itchy skin most of my life.

I hope everyone else is okay, it seems to have gone quiet on the forum recently.

Keep well.

Hi Sam and Pollyanne

Sam, maybe some lubrication before sex would help to reduce the friction which could be causing the skin to rub off? Put it around your entrance and on him, I've found that helps. I cannot use soap and wash with dermol lotion which I get on prescription, it can be used as a moisturiser too.

Pollyanne, I think we tend to post more on the site when flare-ups are bad so hopefully everyone is managing well at the moment. Your gynae saying he cannot see any sign of disease sounds hopeful, I wonder if too many are being falsely diagnosed with this when it's maybe just menopause symptoms? I've not had a biopsy and the dermovate seems to keep mine under control, but this all began about the same time as peri-menopause which is making me wonder if I was incorrectly diagnosed. I have fusion of the clitoris, but as I had suffered and unfortunately clawed myself at nights, I think I would have damaged the skin and that could also have led to the fusion? Although the last time I was at the docs to see if I had VA or if it was the LS, she said she could see a patch of LS at my entrance but she also said there was a bit of thrush so did she really know what she was looking at? Who knows, the docs certainly don't have all the answers, think we just have to wait and see how it all goes for us. There can be light at the end of the tunnel I think as before I got dermovate I was being driven up the wall with the itching.

Hi Itchy, I assumed that people were, hopefully, in remission but I have found on this site another discussion thread about LS with some different views about links with anxiety and the subject of shrinkage, whether it is a fact of ageing or due to LS, I think quite a few of you are a lot younger than me though and I'm still not convinced it's age only but remain hopeful that I don't have LS or if I do that it remains under control. It really doesn't matter so much to me what it looks like as long as I can feel comfortable in the " knicker department" as my friend puts it. I hope all you younger members are getting relief and that husbands/ partners are understanding. Our marital relations tapered off after my hysterectomy and then I stopped HRT and everything started drying up and my husband was worried about hurting me.

Anyway enough for now there are so many variables it's no wonder we're confused. Cheers all.

Hi all, I have not commented on here foe a while either , I am pretty much the same as you all still not had a positive confirmation at yet for LS. I am still getting UTI,s which is how I first was told I had LS my urologist said I had a white patch of skin around the urethra, like you Sam I did not have any other symptoms . When I was sent to the gyny he wasn't a 100%sure it was LS and I have used the Dermovate for 3mths and am using Vagifem as I have been suffering dryness and this has helped with that, my gyny was quite pleased of the look of everything on my 3 mths check and I am just keeping my eye on things, I do get a sore bottom from time to time and think this maybe the beginning, but I am trying to use sudacrem to sooth this,.

Sometimes I wonder if it is because I can not get this condition out of my head and think about it daily.

So like all of you I am still confused and keep checking for changes and wait to see what happens. Let's keep our fingers and toes crossed it gets no worse.

Hello Everyone! I have just found this site and it's nice to know that I am not alone! I am at present receiving treatment for LS. Interesting to read the posts on whether or not it is genetic, my mother is under a dermatologist for Lichen Planus and my aunt died a few years ago of cancer of the vulva! My mother discussed this issue with her doctor and they now believe that it might be genetic. Years ago mothers and daughters did not discuss this type of issue but today they do and can now build profile's (for want of a better word) on these conditions running in family's.

Hello TT, welcome to our site and happy new year to everyone! I am convinced LS is genetic and hope my grandchildren are not afflicted with it! Mine is very bad at present and, as a result, I am sleeping really badly! I am sure it is all connected with food; let's face it, most things are. I have had to give up oranges, tomatoes (should give up wine but don't let's go there) and various spices. It seems so unfair! Going on holiday soon but no more swimming in the sea - or swimming pool for that matter. Sorry I am such a grouch - probably tiredness. Take care all of you!!