Hi about to try a little experiment on lichen planus and lichen sclorosis

I've had it my whole 62 years (untreated) and had long periods of remission. But it appears to be back to stay for good now.

I was 71 then!!! Initially only my bottom was affected but about a year later I "thought" my front area was affected too.  However, I was never very certain of this  - it was just something I expected to happen. because of what I had read - maybe a case of mind over matter.  The Betaderm ointment (which comes as a cream as well) is what did the trick - I just used the Paladin as an additional resource. ...felt nice anyway.  I have no idea why I developed LS.  Nothing in particular was going on with me healthwise.  I'm a very healthy person (with very poor nutritional habits).  

Ruth, what a cool 75-year-old you are! Inspiring.

Ahem... 78 actually!   Thank you for the kind words, and I hope my comments on this subject will be of use to others.

That's why we're here, isn't it?

I got LS in perspective yesterday, watching a video that showed the plaque molecules forming and then a cross-section of the brain atrophying in Alzheimer's. Kind of made me glad it's not the part of me I think and perceive with that's messed up.

How right you are Morrell! - a lovely friend of mine was diagnosed with Alzheimer's a couple of years ago and sadly we are losing her, and she us. Living on my own I have asked friends to tell me if they think I am 'going off" or" losing it" so that iIhave time to get my affairs straight for the ones who will have to sort it all out

I must confess to thinking if I HAVE to have something wrong with me at least it is hidden and I do not have to suffer strangers' looks, The Itch isnt the Worst Thing in the World- just jolly uncomfortable- and very painful at times, and may be it will continue for the rest of my life - but then arthitis is not A Good Thing either and far more restricting

Yes...it's important to keep this in perspective. I was going off the deep end last night.  I was very sad and uncomfortable. I had a D & C last week and I'm still spotting and cramping. Just last night I felt overwhelmingly sad. I was reading about some of the results of LS and became flooded by strong emotions.  I had a good cry and soon after  I seemed to have moved to a better place. I was officially diagnosed on Friday,  6/13/14. I spent several years trying to get a diagnosis, finally when two white spots appeared on my privates I able to make the connection. I had to tell my dermalogist to please do a biopsy to confirm. While I'm lucky that I don't have anything else that has more devastating consequences, I am slowly adjusting to living with LS.  I am trying not to retreat from life. I am lucky to have some time off from work and able to do some fun stuff to keep my mind off LS. At times I feel the sadness creeping in. I'm learning to think positive and not get too tired, hungry, lonely or pensive. My friends, partner and family have been of some solace. In the USA, I am constantly educating doctors, friends and family about LS. I am trying to reprogram a lot of the negative chatter that plagues me at times. I have a plan to join a meditation group, and qi gong class. The worst for me is when I'm back at work stressed out. If I have something I can go directly after work like a yoga, meditation group or  qi gong class I will feel supported. Thank you ladies for your input, information, stories and support.

Willie, I was only diagnosed a year ago and I felt exactly as you describe for about six months. It took me that long mostly to stop worrying about my husband. You're right that the hidden nature of LS is both good and bad.

Meditation and qigong are both ways I learned to calm myself over the years. What I do these days is knit and sew in winter and garden in summer. I can honestly say I live in the present. I know this because whenever my husband reminisces or plans I find it sort of odd. I'm convinced this is mostly why my LS is not a lot worse. I've had it my whole life, untreated. So either I'm lucky or being calm has helped. When I'm not calm even for a short period – like the transition into a new relationship – I break out in horrible pizza-face psoriasis. This forces me to take my stress in hand.

i'm sorry that you were sad last night willie. please know that we are thinking of you.

may i have a complete list of everything you feel sad about please?

(if you would like to engage in a little exercise...no obligation!).

xx

I guess I was sad about many things mostly I was projecting into the future. Will LS disfigure my privates, will I live with constant discomfort, fear of the biannual doctor appointments because  it  may show up cancer, will my partner leave me, how will I manage at work and will I always feel this sad. I know of course things change that I won't always feel so down. Lately, I can not hear anyone talk about sex, sexual organs, biking riding, etc. My partner told me I am distant, guarded and pushing them away.  I've been staying with my feelings and  I know I will move forward to a better place. I guess cloudy days aren't so bad and sunny days follow. I rather enjoy cloudy days. It seems the NYC summers don't agree with me. Thank you sincere concern. It brightens my day. 

thats ok willie ...you're welcome.

well now that you've articulated those fears and indentified all the issues. i'd like to ask....

'is there anything else?!'

how does that question make you feel?

can you add anything to the list?

love marey xx

OK..so much fear..yep the discomfort is horrid..will it disfigure your privates..well looking at the camera I always seem to be on in my dermatologists office it seems unlikely..if you use the dermovate..I have to say I have a small amount of fusion..a couple of funny coloured pieces of skin(dark) and a lot of white and red bits..but this is after 14 years..sometimes if I am busy I forget about it completely....until it decides to have an episode and I cannot figure out what causes these..yet..never give up honey...I know there is some research going on(which makes a change) take every day as it comes..and maybe I should take my own advise methinks X

!! yea sky!!

thats it isn't it... we're talking ourselves into self improvement just as much as each other xx

oh you've got red bits too. so have i...the patch where the clinic nurse tried to force a speculum inside me inorder to take a high vaginal swab....never mind that she needed to change tack under the circumstances...given the speculum would not fit....yet she wasn't giving up! hence damage which has just stayed red. are your red patches to do with similiar trauma may i ask?

One thing on your list that Marey and Sky haven't mentioned is the cancer scare. That's the upside of twice-a-year visits! No way are we getting squamous cell carcinoma! My mother has had it on her forehead and on her neck and doctors ignored these spots of recurring sores for years before they started to worry. Even when they got down to business, it was totally removable. My sister doesn't have LS, but she had a big swath of SCC taken off her vulva many years ago and nothing since. It's really nothing to worry about once we're under proper care. I've been on clobetasol a year now and changed my diet some and had shiatsu often and kept super calm. Really no progress (the bad kind) in that year. I have ups and downs and mostly stay in the present. So when I'm down I know it's not permanent and when I notice I'm humming a tune I appreciate I'm enjoying the day at that point.

Hi Morrell. Just off to the hospital today. There is a couple of things to mention I think. One is dermovate can cause mild infections..I have had quite a few..something they treat with flagil(if that is how you spell it) so that increases itching until controlled. Cancer is a worry. I had a basel cell on my nose..an itching second to non. Now this flare I have had would not go under control..in fact the more I used demovate the dryer I got and the whole thing was swollen to one side. I used manuka honey for 5 days and it has calmed..but it was a messy thing to do(could be my imagination but the skin feels slightly heathier). I will be asking today on the new oral meds they mentioned last time. Because the research underway is on lichen planus not sclorosis I may not be suitable for these new meds which are being trialled. 

good luck at the hospital....i'm thinking of you x

No..I think the red redpatches are lichen planus and the white ones lichen sclorosis..as for the dark patches well I think that is pigment change..it is not a pretty sight but I cant think vulva's are anyway..We need the smallest spectrum I think...not that we should tell anyone their job of course...but I have learnt a yelp in time saves a lot of pain

hoping to continue to brighten your day (!)....here is the point of the exercise....it was to invite you to list everything thats on your mind....good or bad....just drawing up a list i very much hope may have given you a perspective. so in other words: thats it, thats everything.....the whole lot....caboodle. 

i find it helps to realise that its a list that doesn't go on for ever.

did you feel that?

i'm glad you're staying with your feelings for a period....self nuture, withdrawal, acknowledgement of where you are....i'm glad you've been enjoying the cloudy days.....hope to speak to you when you emerge xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I was away for several days. I had no access to internet service. Upstate NY has spotty service. Thanks for all the support. I was wondering if anyone has gone through this experience I had a d & c on 7/9/14 to remove some endrometriosis tissue. Since the surgery I've had a flare up. I don't know if the speculum caused some abrasion and bruising but I've been in  more pain. I was also wondering if the  benedine solution used to sterilize the vaginal and vulva area  for surgery caused this flare up. Tomorrow I see my dermatologist so I'm hoping she has some answers. 

Sounds sore, Willie. I have read that the Koebner phenomenon in psoriasis may also apply in LS. Trauma triggers flares. I had a long dentist appointment in the spring where the dentist kept pressure on my lip for an hour. I broke out in a small spot of psoriasis in that spot and it came & went, but it was literally months before it resolved. I believe this is why episiotomies make our perineum more prone to tearing with LS. I believe there's no mystery – abrasion is enough to do it.

Thanks for your  reply. I'm hoping this won't last for months but if it does I'll try to copy with it the best way possible. I agree that any trauma could cause a flare up. 

Sorry, I made it sound bad. It was barely there after a week or so, but because it was right in the middle of my face I could keep track. I just found it interesting how long it lasted. It didn't hurt, it was just slightly flaky.