Posted , 3 users are following.
hi cen any of you loverly ladys tell me what you wear for comfort I have Linchen planus of the vaulva and I find most things I wear make it sore like jeans and underwear i never feel comfortable I would like to be able to wear nice fitting jeans and trousers and underwear but I struggle to find things that feel ok any advice would be extremely appreciated
0 likes, 8 replies
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cheryl45329 Gillian1956
Posted
ive not worn jeans for at least 4 mths. cant imagine being able to bear it.
ive also replaced my underwear several times as a bit of lace or elastic can cause havoc.
i do miss jeans and trousers such a wardrobe staple, but its not worth it. even crutchless tights can cause discomfort.
on the plus side everybody keeps telling me how smart i look!
lynne1945 cheryl45329
Posted
hi
SInce my diagnosis of VLP 5 years ago I have a new wardrobe that consists of long skirts and harem type pants and no underwear! I am 74 and so dont go to work but anyway I can and do look smart when I go out. (which is seldom if the outing involves sitting for long)
ON the odd occassion I do need knickers I have some light loose cotton ones.
I guess its a shame if you are young and want to wear tight pants and jeans and I feel for you, but comfort ends up being everything in our lives.
Gillian1956 lynne1945
Posted
do you use any medication for this like steroid creams and Epederm cream and if so do you find it helps I'm not having any luck with steroid creams tried different ones all seem to make it worse
lynne1945 Gillian1956
Posted
Hi Gillian
Yes I have been using Dermavate (Clobestasol) for 3 years 2xweekly. Before that I was on a lesser steroid called Mometasone which was weaker because, like you, I couldnt tolerate the Derm, but I eventually had to use the strongest. At first its hard to know how to treat it and there isnt a lot of help for us. GPs don't even know what to do with us. My gyn helped me the most and has even given me free laser treatment but it didnt help in my case.
At any rate you will need to lubricate constantly or the labia will stick and tear or quite quickly will 'melt' into the underlying skin. I use many different things but my choice at the moment is pure emu oil.
It sucks to be us, but all we can do is box on until we find the magic soothing treatment to calm us down and hope it lasts for a while. Then we try something else.
Good luck Gillian and anything you want to ask, feel free. x
Gillian1956 lynne1945
Posted
thank you I'm using the same steroid as you at moment I see a dermatologist she sees me ever three months and I think shes struggling with what to give me to use I'm in a constant flare up
lynne1945 Gillian1956
Posted
Gillian
I take Amitriptyline 30 to 40 mgs every night. since I started that a few years ago the neuropathic pain is helped a lot. I seemed to be in one long flare up my first year, I suspect the panic and extreme anxiety about the whole business contributed to that.
Its interesting talking to someone else with LP of the vulva, I had 'met' 100s of women online with LS but only one other with VLP.
Ask your derm about Amitrip. She may recommend it for you.
Gillian1956 lynne1945
Posted
thank you I will ask her at my next visit in January, there are a few others on the forum who have it as well but I don't see many posts it would be nice if we could all have little chats about what's working for us and any tips to pass o tk one and other.
lynne1945 Gillian1956
Posted
Gillian
I wonder how you are doing now? Did you get any relief yet from your flare ups? Let me know what the derm said and recommended. You have a good dermatologist if you get 3 monthly appointments. I see a gynae and shes been good but she never advises me to see her in 3 months or 6 months or anytime actually. I go and see her twice a year and thats me being cautious because of the (quite low) risk of cancer.
Keep battling on. Its all a bit overwhelming at first, I know, but once you get into a decent regime that works for you it becomes easier. It will become second nature to do all the little things that give relief.
Avoid sugar, especially refined. Sugar is your worst enemy. Youve probably already been told that.
I do all sorts of things like using special soap powder with no perfume for laundry, had filters put on shower water and kitchen water. Maybe they all help a little, I like to think so anyway.
I hope you have support because its bloody lonely getting through this alone. My husband and daughter are great supports. Just to have a moan to now and then (every day sometimes!). Because its not the sort of thing you can bring up in a conversation at a party or anywhere really!
Take care