Lichen Planus
Posted , 5 users are following.
I am wondering if there is anyone on this site who has just LP vulva.
I have got so much info on this site on care for the area and lots of it does help. The diseases are similar as regards the steroid treatment for the burning and sore areas and even, in my case the loss of architecture over the years when I didn't know or seek treatment.
But I have to admit I feel quite isolated with my particular problem. The thread on oral sex for example, that just got a bit gobsmacked reaction from me! Lucky 'ol you guys I thought ... LP is just constant flare up with ulcers. No way, sadly.
I have searched the Internet for groups and blogs withLP to no avail. Mainly to see if anyone has heard of a new treatment.
LS seems to be covered as far as support goes and reading the posts re new treatments eg Mona Lisa and Alexander's borax experiment and reading Ginnys book gives me such mixed emotions. So glad and pleased for you all. But LP never mentioned and I do get the distinct impression it is quite rare indeed. My dermo is evasive when I ask if she has other patients with it (probably doesn't want to depress me 😏) Neither she nor others have mentioned any new breakthrough treatment for LP. I wonder if there's anything out there.
The Lichen Planus site here nearly exclusively is peopled by others with OLP and body lichen P ... I do get the very odd OLP flare but I stay away from nightshades and preservatives and have no problems.
Alan the moderator suggested months ago I start a new thread here for LP vulva, I was new then, and shy lol, so I didn't at the time.
Just wanting any suggestions and help with coping and I suppose knowing I am not alone in this barely managed new changed life with vLP
I continue to post here and get help here, it's marvellous and as I say the two diseases are alike in a lot of ways, and therefore so are the treatments. I honestly don't know how I would have coped without the information and compassion shown on this site. Thanks so much to all. X
0 likes, 9 replies
lynne1945
Posted
annieflipflop lynne1945
Posted
I too have "just" Lichen Planus, but as you say the treatment is the same. I've had it for three years now (I am 73) but it's under control with a tiny amount of Dermovate maybe once every ten days or so. I have flare ups every now again if stressed or drink coffee or alcohol.
Unfortunately in the last six months, it has appeared in my mouth and I get very sore dry lips, but nothing than can't be coped with. I've noticed that if I have a cut or other skin injury, the Planus appears alongside and the worst time was when I had a shoulder operation and it appeared under my arm, under the bandages where I couldn't get at it - horrendous! Actually this all started after I had an operation for a prolapse 3 years ago.
This site (and others) has been a life saver to me and you soon realise that to have Lichen Sclerosis is far worse, with the loss of architecture etc. I was told originally by my dermatologist that Planus usually goes within a year or so, but maybe that is with young people only.
I wish you the best of luck Lynne and hope you can learn to live with it as I have, thanks to this site.
lynne1945 annieflipflop
Posted
Thanks Annie for your reply!
I suppose one will never know which is worse, and it's certainly not a competition, heaven knows, but boy, I have had just two days in the last year where my eroding ulcer has healed over. The rest of the time it's been raw. I have certainly lost my architecture in a big way. We all seem to be somewhat different, even within the same 'label'. Curious.
I had a prolapse op about 20 years ago, plus a cone biopsy 40 years ago, maybe this was always going to be in my future.
Sex also not on the cards for a decade due to pain. Never a proper diagnosis though, till a year ago.
It all starts to add up after reading the multiple stories on here.
Next time round I want to be a man lol
It's taken a year of various strengths of steroid to get to Clobestasol, the strongest. And that's with months on Prednisone. Even then it's a very thin cream, can't tolerate ointments.
I can't wear knickers at all and wear only skirts or harem style pants.
I am 71 now, I think my neighbours must think I've turned into a late life hippy! Used to wear shorts and pants.
Sorry to hear about your skin problems. Are they open sores? I get strange itchy raised areas and my skin and scalp are very sensitive and mark easily but no lesions. I get them in my mouth mucous membranes though, ulcers and lumps. I know what causes them now and avoid the foods. Chocolate and coffee and tomatoes etc also anything packaged.
I admit it it's hard to cope with my very restricted life now, unable to travel because of the sitting etc but take comfort in the life I had till 18 months ago, many young ones on here which just is so unfair.
I will take heart with your story and look forward to better management and relief of vulva area. And wish you well with your other issues. X
karen41728 lynne1945
Posted
karen41728
Posted
Hi Lynne don't know what happened then...... I am 58 and have lichen planus oral and itchiness on the skin I also had cone biopsy about 15 years ago because of abnormal cells and I do think this is a trigger to the lichens although the doctors won't admit that or even really discuss it which I find frustrating..... I can't eat spicy foods or citrus foods which is so annoying just burns my mouth... I find coconut oil helps on the skin and to swish round my mouth... It does help to talk on here we don't feel so alone then... I have a few other health problems irritable bowel and a problem with one of my legs now and I blame lichens on these other things too... Hope you are well Lynne X
lynne1945 karen41728
Posted
Hi Karen, thanks for posting,
I think quite a few people here have gone along the same route, re surgery to reproductive 'bits', in the past and really the question does arise. But whatever caused it, it can't be undone and I suppose what we must do now is try and cope.
Sometimes easier said than done.
Personally I believe it's the stressful things that happen in your life and the WAY you handle it. I never handled stress well, not by choice but by nature or not having the tools available then. Such as mindfulness, exercises, therapy etc. of course they are all offered to me now along with antidepressants but just a tad too late for my body.
IBS and gastric reflux are other illnesses I have and triggered by stress.
If only I knew then .....
I have read your posts before re your OLP and really, that is pretty awful.
I'm lucky I don't get that now; the oral LP, just at the beginning of it all kicking off, with all the stress. And staying away from the nightshades and never touching spices or preservatives. Food is a bit bland and boring but better than the alternative!
You are fortunate you never got vulval LP, the two so often go hand in hand. You dodged a bullet there!
good health to you.
karen41728 lynne1945
Posted
Hi lynne
thanks for getting back to me.. I do think I have the vulva LP think it just progresses slowly..hair is really sparse down there now just doesn't look normal and gets itchy but I hate going to the doctors, really feel like I just don't get anywhere.. So glad we can all talk on here it really helps, I have some lovely friends from this sight who I meet up with which is really nice.i am in the UK...
gill77081 lynne1945
Posted
I have vulval lichen planus. It is a small red strip just inside about one inch long, but can get sore and itchy and sometimes stings. I was sent to a combined gynae/vulval clinic which only happens every 6 weeks. The gynae and the dermatologist agreed it is lichen planus and prescribed Dermovate and told me it is the only thing that works. I was also given some cream to use in the shower. I use Vaseline as a barrier especially before going swimming, which I enjoy once week. It seems to come and go. Sometimes it is worse than others. I have stopped eating sweets as sugar is supposed to make it worse, and I hardly drink alcohol, only when out for a meal. Also both sugar and alcohol make my heart race. I also have ichthyosis and mild psoriasis which are also auto immune conditions for which there is no cure, only management and moisturising. Ichthyosis which I was born with makes my skin dry and flaky all the time. I'm 66 now and sex has been out of the question for a long time due to splitting of the skin and soreness. I do miss the closeness but just have to live with it. There are worse things in life. Thanks for posting as it's good to know others have to put up with this, as it's something not talked about!
lynne1945 gill77081
Posted
Hi Gill, thanks for posting. Now I realise I am not such a rare creature after all, thank God!
I read up on your ichythyosis which looks quite uncomfortable!
I never had any skin problems before in my life, but along with my VLP I have dry flaky skin, patches of raised itchy skin on my body and can't wear elastic next to my skin. OLP too when not careful with food.
nobody has ever prescribed anything to use in the shower. I only use pure olive oil soap though and am careful with hair products.
Yes, like you, I miss the sex but we still have a cuddle now and then and it's not such an issue these days.
Good for you going swimming! I like it too but we are miles from a heated pool and would never go in the sea now. the Vaseline works as a barrier for many people. At the moment I am using virgin coconut oil as a moisturiser but have used many things and then one day it just doesn't help any more and off I go to try something else.
My LP is much as you describe but never gets itchy, just burns and sometimes aches. I do believe I have vulvadynia as well as my lesion is about half an inch in diameter on the left but my whole vulval area feels sore and hot esp when sitting. My dermo said it could be, but its kind of a generic term, according to her for generalised vulval discomfort. Who knows.
Best of luck and health Gill.