Hi, got diagnosed last week. Jolly fun, innit!

Honestly I feel your pain ... it's only been about 12 weeks since my surgery and three infections , with only two weeks of feeling ok , I get told more surgery is now imperative!!! I am totally sick of sitting and resting I don't like it and I feel fed up about this all! When will it stop ! 

I know I am lucky having friends to help but it does not stop me feeling very very sad xx

Moan over ... we r in this together ladies ... sending you hugs n love xxx

Hi Lisa,OMG 15 ops, you wonder when they'll stop! Poor you, it's the healing that's the bloody nuisance and how much toilet roll can a girl use; my husband laughs about it!! I go through tons of the stuff. Little dab, new bit. Little dab....

I've had Lichen since I was 3 and have had so many ops I've lost count. Vulval adhesions, labia adhesions, loss of Labia, urethral structures bla bla bla. I'm 47 now so have pretty much ticked every box of what Lichen can do to us poor women. I also have extra genital patches, mainly on wrists, torso and boobies buy they're not an issue. As bad as it is the find out I've got cancer, I feel Ive got away with it for 45yrs. So many consultants along the way have warned me about the predisposition to vulval cancer as such a high % of patients who present with it, have LS. Doesn't dull the shock however. Day by day, that's my new motto p.s. I'm not menopausal either. Thankfully though my periods stopped last year as I had a womb ablation for heavy periods and haven't had one since (fingers crossed)

I'm beginning to feel angry now for all of us LS sufferers, that the condition isn't better known and more done to control/ CURE it. I was given no information at all by the hospital back in 2013, just told I had this condition and would have to live with it. No consultant appointment, no concern shown, and no information about predisposition to vulval cancer. If I'd known there was a link, I'd have taken Lump to the doc when it first appeared, pea-sized, over a year ago.

Eclair, wow since age three. I was told Lichen Sclerosis is known as the "old ladies" disease as it usually shows up after 60 or menopause. (I think I said that to you before) but age three. We are the same age 47. I used to think having VIN III is like having Cancer but when you hear the C word it is more difficult I think. 

I just want it to stop! All of it; I try to be tough, have a smile on my face but after all the surgeries, all the Cancer diagnosis and the chemo and radiation it left me with such awful nerve pain and swollen hips, groin area, legs, tingling and burning and emotional crap that you feel alone with, I wish there was a cure! I am hoping for a year in between cancer diagnosis this time, that's my goal. Sad isn't it?

The toilet paper issue cracks me up because I can be frugal on a lot of things but Toilet paper is not one of them. My diarrhea is so horrible I am tethered to a bathroom at all times. 

Thanks,
Lisa

Ye gods, Lisa, what an utterly shitty state to be in ... Sorry, not being flippant. You'd think that some kind of nerve block would be possible, wouldn't you ...

My sister said something the other day that stuck in my mind. She recalled that as a baby I had terrible nappy rash - very sensitive skin right from the start - I wonder if there's been any research into genetic links or predisposition towards LS?

Any link with Polycystic Ovarian syndrome?
For my daughters' sake I'm going to do some digging.

Eh, it's 4am, I can smell coffee (there isn't any, I just have a weird sense of smell and phantom odours come and go), so might as well start looking.

Hi Nyree

Lisa, this is awful. You must be fed up with the whole thing. I think the trouble with vulval cancer is the groin is a large area of tissue and they can keep in excavating. I must admit it sounds like I have been blessed with good consultants over the years. I believe the standard protocol for LS is 6mthly check ups by a specialist, especially as apparently if you do get vulval cancer, it can be aggressive as the cancer already has 'diseased' skin which stops them getting a clear margin; hence the multiple ops etc. It knocks you for six doesn't it as people always ask how you are doing and think that you're getting better because you're having treatment and you're not. My family keep saying, don't worry you'll feel better soon. When? It's just one thing after another. Always waiting got the next op. 

Try to meditate as it's a great way to clear your head if you can. Sending you lots of hugs xxx p.s. I use sudacream on my bum when it gets sore. Plus if it's too painful you get also get instilagel as it numbs the area so you can clean yourself. When you have cancer you don't pay for prescriptions so make sure you get everything to make yourself comfortable - xx

When I used to see Sally Neill (who writes papers on vulval diseases world renoun) (st thomas') she said that they were looking into a possible genetic maternal link which misses a generation. She mentioned it because my nan also had LS but not my mum. I've forewarned my daughter if she has any girlies. Sally neill has retired now but you can google some of her papers on it if you wanted to x I also used to write for the online LS organisation and lots of young girls sadly have LS too, which can present as blisters, bruising and urinary infections/thrush etc xx wish i was famous as i'd shout LS from the rooftops to make people aware!

I have Cymbalta for the pain in my lower legs but doesn't help the upper part. I also have a flexi-touch machine to help with the lymphedema swelling which is amazing, just got that about a month ago. 

I am still amazed about the LS at such a young age. I do not have Polycystic Ovarian Disease however my daughter does. But, I don't think it has anything to do with me; she was born 10 wks early weighing only 1#14oz and has med conditions due to being born so small. She's my miracle. 

From everything I've been told, vulvar cancer is not hereditary. Which is great.

I wish I could find something to help with the nerve pain and sex drive or want of intimacy....

It does get better, but every once in a while you think of what you are really going through and missing.

Take Care, 
lisa

Hi I am 40 and lichen sclerosis has currently woke me white patches on my genital area driving me mad I scratch like mad can't help it recently finished time of the month which flares it up and then it stays there I've used barrier cream sudocrem which I found helped at first but not now it's driving me insane hoping to visit dr soon and tell them how bad it's gone as I have a 6 year old little girl who's asking me please don't scratch infront of her as it's not nice I say sorry but I can't help it I have every autoimmune condition going I think diabetes,thyroid,slightly anaemic I want a cure for it must be someone out there who knows what the cause is ruining my life and I suffer with anxiety and depression anyway so this condition doesn't help with the itching and stuff really gets me down.