lichen sclerosis

Poor you you have my sympathy, I do hope you get some relief soon, healing thoughts going out to you. X

Hi All

I'm new to this site, but was diagnosed with LS three years ago, following a very rough year of misdiagnosis. i was told I had variously thrush, post-menopausal dryness and vaginal herpes - you can imagine just how much my husband of 30 years loved that one! I found dermovate helped my condition greatly, but after 12 weeks my skin changed totally down there, and on the advice of my consultant I weaned myself over to 1% Hydrocortisone bought over the counter. I stayed very sore, although the cuts and ulcers healed, but a wonderful dermatologist I saw privately told me that damaged LS skin is very sensitive to even a mild thrush overgrowth, so treated me for that as well, and told me to keep on top of thrush at all times. I feel about 90% ok at the moment, so there is hope out there. I'm currently weaning myself onto Hydrocortisone every second day, and so far so good. I can wear soft trousers, and loose jeans. One tip is to inspect the seams of any jeans or trousers you buy, and sew down any seams that stick up, it makes a huge difference.

I'm wondering has anybody any advice about stinging where a labia was absorbed? All my life I used to ride horses, but this area is still painful, and I can't bear any contact with a saddle for more than a few minutes. While Im ok for day-today life I really miss my sport, and have lost a huge are of my life and many friends through this disease.

Hi Kate,

Sorry, I don't mean to sound patronizing...but Welcome to the club. I can relate to your feelings toward your sport, I was always a keen motorcyclist & bicycle rider & they are all but impossible for me now too.

Always having being a "Tom-boy" I've lived in jeans, trousers, shorts etc. & due to my job I have to wear company issue trousers' so some times (Like today) it's so un-comfortable when I'm suffering.

I have been very fortunate that I've only ever suffered with thrush twice in my adult life & it was horrid, Like you, my inner labia has also gone completely & today I feel generally miserable, it's also my girlie week so that's not helping either. I'm now at the point where I don't think I will be able to use tampons much longer & that fills me with total dread. I actually feel like I'm being turned inside out today, don't know if anyone else get's that sort of feeling??.

But all my "belongings" have changed in such a short space of time, I'm still waiting to see a specialist so will be glad when that's over with really. Reading other post's I think it's certainly oestrogen related, because the majority of us are peri- menopausal - menopausal age groups. I know there are some ladies on here that are much much younger & for them it must be so soul destroying, I know how I have felt being in my mid 40's.

Well hopefully, other ladies will help with the questions & answer's on the other forum on this site & maybe we might be able to talk to our own specialist's with what ever info we can muster up ourselves.

Wishing you all a good weekend Girl's, relax, enjoy & have fun Best Wishes T xx

Well day has come that I have been dreading . I was diagnosed with this horrible problem about 3 months ago during a colposcopy for a recurrent uti infections, the strange thing was I was so shocked as I did not even know I had it or never even heard of it as there were no other symptoms.apart from a white area round my urethra I didn't even knew was there. I did a 2 month course of Dermovate and the gyn I saw says use as and when. But as there was no symptoms I did not apply it after. He was not even sure it was lichen. Yesterday I got a uti again and today it has started to itch and irritate not my white area but my outer labia is itching loads, when I used the Dermovate before my labia lost all the plump tissue and is now half the size, my gyn says this happens with age I am 57.

As a newbie can I just ask. Do you get a flare ups every couple of months and use Dermovate as and when or do you use Dermovate all the time to try and prevent. I am in sheer panic mode today as I am not sure what I should be doing. My next appointment with the gyny is not until October. Scared of what is to come. Rosey

Hi Rosalee, I am new this week also and what a shock to find you have an incurable disease that you've never heard of! I don't know how long I have had it but in some ways I feel luckier than some because I have not had the dreadful itching they describe, all I know is that for at least all of this year, and possibly longer, I have had sore areas that came and went, I never looked to see what was happening but now this week when I decided I'd better have a ( very difficult) look I am missing bits. I think it could well be hormone related, I am 71 and had a total hysterectomy in 1994, I was on HRT for 9 years but then stopped and have managed fine since, I did feel I was drying up but put it down to age and assumed that's what happened. It is unfortunate that this area is considered so private but that is the way we were brought up and once you are past child bearing years you get out of the habit of having it looked at, especially as I no longer need smear tests. It took me months to pluck up courage to go to the doctor, how silly of me. I seem to have mine under control at the moment with Betnovate and Emu Oil but am still trying to come to terms with losing part of me. I wish you luck. X

It is not nice at all and I feel sorry for anyone that has it. If I mention the word lichen sclerosis to any of my friend they all ask What is that never heard of it! I am so glad for the forum as at least we can get some support from one another. I have soooo many questions my mind will just not switch off from it! I also was drying up and my gyny has me on Vagifem which has helped that problem fine now, I have not got any sores at the moment as that's sounds very uncomfortable . It's so true that we don't look down there . i never realised i had a skin bridge across my opening. but now I look about twice a day. I am glad you have got yours under control. I hope is stays that way too! X

Hi roselee

Just want to say that while Vagifem worked very well for me for vaginal dryness the increased moisture caused a slight discharge which actually irritated the LS on my vulval skin. if you find that your LS becomes more uncomfortable just be aware that it might be the vagifem. my gyn has told me to stop using it for the moment. Nothing is straightforward with this stupid disease.

Just a few points of information re LS, auto-immune disease and thyroid problems. I suffered from an underactive thyroid for about 15 years before the LS started. I was stable on the same dose of thyroid medication for all this time, however, within a year of my last period both my thyroid levels dropped so much that I'm now on twice the former dose of eltroxin and the LS started. This can't be a coincidence. the nurse in my GP's office was telling me that she's just back from a major conference where they discussed the importance of hormones to women, and how menopause has a much more profound effect than was previously realised, affecting the whole system.

Hi girls and welcome to the newbies

I've not been on lately, but having a flare-up again prompted me to log in and I'm very interested about the last few posts linking this to maybe being hormone related. I'm in peri-menopause and probably have been since this started a few years ago. This last week has been my worst so far for hot flushes and therefore not a co-incidence that my LS has flared up?

Pollyanne - can I ask, do you think taking hrt maybe prevented this for a while and it started when you came off it and did you still get flushes when you came off?

I am as usual during a flare-up using the dermovate twice a day and I find using the shower down there tuned to cold helps to take away the discomfort a bit. I've not found the emu oil to be of much help. I use dermol lotion (on prescription) to wash and moisturise with, I can't use any soap or shower gels.

Healing thoughts to all. xx

Thanks Katie funny you should say that as I have had some discharge from it. I use it twice a week, I am not noticing any irritation from it yet,but I will keep it in mind, it does though make your hair.fall out slightly when I wash it, I am using lots of conditioner at the moment I have been on it for 4mths and my gyny has told me stay on it until my next appointment in october.so not sure how much longer he will keep me on it for. It has been a great help for my dryness and soreness but will see what happens.

I have not had a thyroid test, I think the menopause has a lot to do with it but I also wonder if it could be related to Stress. I had a really stressful period in the few months before mine started

Hi Itchy person, it's over ten years since I came off HRT and I don't think I've had it that long. I was very lucky and had a relatively easy menopause, no flushes to write home about, I had more or less finished with my periods before I had the hysterectomy, for fibroids, and all I felt was relief from the pain, but as I had a total hysterectomy I have no natural hormones anymore. Incidentally my two sister, both older, have had difficult menopauses and are still suffering. A questionnaire would be a good idea to see how many common factors we sufferers have.

Bry the way I said I was on Betnovate, I don't know why as I am actually on Dermovate. I am finding that two weeks after my diagnosis I am not thinking about it every waking minute, beginning to accept it, what else can you do?

Morning Girl's

Just catching up on the post's, & again I find it all so interesting, especially as people are a little more forthcoming with a few answers to some of the questions asked by Margaret. It's does seem very coincidental that so many ladies are suffering with stress, anxiety or depression (anxiety in my case) & that hormone levels seems to playing a large factor for all of us too.

I had my period last week & was on fire !! all week, itching, burning, Aaaargh!! just horrid, my period has finished for this month (Phew....relief) & everything has completely settled down again literally overnight, the symptoms have gone as quick as they appeared. My hot flushes have also really started "kicking in" now & I'm pretty sure they made things worse last week.

Just finding it all very interesting, now we are piecing a bit more info together, keep up the good work ladies, best wishes T xx

re stress and depression.

I suffer from depression at the moment, but I think its caused by the LS rather than causing it. A lot of us are at the same stage in life, menopausal or peri-menopausal, we have less energy but are still working, caring for our own houses and families, and in my case anyway, increasingly responsible for elderly parents. I'm exhausted, so its not surprising that when you add in LS to the mix that depression is the result.

my dermatologist says that LS is like excema or psoriasis in that once you've got it stress can cause flare ups. She suggested that as well as the locally applied steroid and moisturizing creams I should approach it holistically, with mindfulness meditation daily and some form of outdoor exercise. She also said to avoid too much alcohol, spicy food (bad if you have LS round the anus) and late nights. The simple life, in fact!

I do think its worth shopping round till you get a sympathetic expert. I saw two gynacologists, one public health care and one private, who both diagnosed LS and sent me off with my tube of dermovate but very little information, including how much cream to actually apply. The dermatologist was so different and so concerned. It was she who suggested that I gradually switch to the Hydrocortisone, as she was afraid the dermovate was causing skin thinning, and who sorted the thrush problem which the others hadn't remarked on - I thought the pain was all from the LS itself. She also referred me to an oncologist who specialises in gynecology, as she was worried by the inflamed look of certain areas. Now I see her and the oncologist once a year each - its expensive but for the first time I feel more informed and that I'm in the hands of people who are concerned and competent.

I live in Ireland, but from what I've been reading on these forums I don't think the situation in England is much different. I'm in another support group on Yahoo, but most of the people there are American. Their experiences with so-called experts seem to be the same though, it seems to be a bit luck-of -the draw whether you get a sympathetic and informed gyn.

Hi everyone

Yes, I do think stress is all part of it - I had been going through a stressful time when I first got symptoms and I've been really busy at work lately so maybe the flare-up kicked off because of that. Although, it has to be hormone related also with me missing a period and having bad hot flushes in the same week as the flare-up - doesn't feel so bad today and funnily enough the flushing has calmed down too, probably indicating a change in my hormone levels.

Hi everyone. I hope all of you are hanging in there and I think this forum is wonderful for off-loading, sharing, and listening, and advising. After being diagnosed with non specific chronic inflammation after pushing for a biopsy to confirm whether or not I had LS I am still use the Epaderm emollient to wash with and Yes Yes Yes oil based lube to help with the dryness. Very soon I am going to hold a 'girly night' with about seven of my friends. At this girly night (getting them here on the pre text of watching a dvd...) I will be talking to them about LS and how no one has really heard of it until they are unfortunate enough to get it. I'm going to give each of them a gift of a magnifying mirror, which may be one of their most useful assets. I am going to stress how important it is that we all regularly check our bits for any changes, as diagnosing LS in the early stages and getting the appropriate treatment for it helps slow this awful thing down. Despite the embarrassment, it's no different from asking chaps to check their balls regularly. Up until I wasn't well 18 months ago, I never really bothered to look and I certainly hadn't heard of LS along with many other disorders. Has anyone else discussed this with their girly friends?

Hugs to all

Blue xxx

What a good idea, I am at present visiting my friend of 60 years and have had a chat with her about the need to check her bits, we can't believe we have never heard of LS, it has never crossed our radar. We agreed that if it was on any other part of our body we wouldn't hesitate to go to the doctor, it is such an embarressing area to talk about. We've also talked about maybe trying to raise awareness by contacting women's magazines. It was good to talk to my good friend about it but I still value the understanding of fellow sufferers on the site. Cheers all. X