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

Hey Nyree, 

Sorry to have to welcome you aboard the fanny rollercoaster.... buckle up baby, it's one hell of a ride!! (and with VIN they never let you off the bloody thing!!)

You and your girls have had a really tough time, and it must feel like you are never getting a break. It does sound like you have each other's backs though which is good and you will need that support. 

Just know you are not alone, we are here and although our journeys are all different, we all understand the crazy emotions that go with this disease.

Take it one day at a time chick, and you will get there. 

Sending you much love and strength. 

Joolz xxx 

Thanks, Joolz! I keep thinking of one phrase from husband's cancer - this could be as good as it gets. - really cheerful, eh! Pretty bored of waddling around, unable to do much of anything, just Waiting for treatment to begin.

Hi, welcome to the John Wayne Club! I was diagnosed in February. I've had to have a vulvectomy which was fun and had a wound breakdown so two lovely stays at St Thomas'; nurses were brilliant. Went back to Guys Cancer Centre this week and Consultant said that the margins on the tumour were not clean enough as I've had Lichen sclerosus all my life and the tissue has to be free of that too. So I'm now waiting for another op date and he's said that I've got to have the original site re-excavated with a much wider margin. I'm wondering where he's gonna take that from, as there's nothing down there left to excavate!! It's a cavernous tutankamun tomb! Fed up and sad that I'm losing more and more body bits. He then said that after that he'll need to go back in for sentinel nodes which will be another op. As much as I like being put to sleep, it's not fun, as you say, and with it being such a delicate place it hard to explain to people how much it hurts and drags in a dull-ache way. Thank god there's a place you can discuss labias and clitoris's without people spluttering their tongues out! Love and blesses to all of us xxxx

Hi Eclair, oh thanks for the laugh!!! The John Wayne club indeed!

I've also had lichen schlerosis diagnosed for four years, but I suspect it's been there all my life ... The team said no surgery for me because of that, so I'm getting the 5 weeks of daily radiotherapy instead, with two bonus session of chemo at each end. Yay. Apparently surgical removal of the lump would need too long a healing time before they could deal with the pissed-off lymph node.

I'm so sorry you're having to have yet more taken. I wonder if any research has been done for a possible link between lichen whatsit and vulval cancer? It certainly sets the scene for sores.

Hiya, sounds like your team are on the ball. Where are you being treated? It's because if the Lichen on the margins that I have to have another op. I will mention this to my surgeon when I see him to get his views on mine. I don't know what stage yours is but mine is a 2 so I think I may have to have radio at the end of it all - oh the joys!! Next time round I want to be a boy!!

Eclair, Sorry you have to go back in for more excisions...I however can attest that there is always something for them to remove. I asked after my third surgery what is left to take? I have had 15 vulvar surgeries now! (not normal for everyone so don't worry, just saying, you'd be surprised at what great surgeons can do.

Good luck to both of you ladies. And yes, as far as I have been told if the lichen isn't treated, it will turn to VIN and so on. I have had lichen since 2007. I was also told most women who have lichen are post menopausal. (I was not) How about you two?

Lisa

Mine is a 2 as well, I think. I'm being treated at At. Luke's Centre in Guildford. Eh, men get testicular cancer ...!

I was told that there's no treatment for lichen schlerosis, that I'd just have to live with it.I've had polycystic ovaries syndrome all my life, as well. The lichen sclerosis became a problem in 2013 after surgery to remove a large vaginal polyp. It meant an end to intimacy with my darling husband, much to his distress.

I have Clobetosol not sure on spelling. It is a steroid cream for my lichen sclerosis. If used too much though and not under doctor's directions it can break down your skin tissue really terrible. Fissures, cuts and thinning skin. It helps tremendously with the itching though. I can only use sparingly right now because I just finished chemo and radiation in January.

Lisa

Ah yes, I was given Fucidin, sounds like a similar thing. Yeah, when you're needing medication for thin, sensitive, itchy skin, and the medication given has side effects that is CAUSES thin, split skin ... go figure.  Right now I'm irrigating VERY gently twice daily with plain warm water, then using a barrier cream. You'd think a better treatment for lichen S. Would've been found by now.