New - preliminary DX and advice needed

hi there Wendy.

i am like yourself, full vulva area involvement and the perineum ,

i am one of those LS sufferers who has this itch without let up.

i have had 10 + years of never ceasing torment.

i am exceptionally fortunate to have a top notch gynaecologist who also specializes

in gynaelogical dermatology.

the vulval cancer you speak of is extremely rare but i never cease to feel reassured when my gynaecologist

does his 6 monthly check and pats me on my leg saying " still nothing to worry about Pam " !

to be absolutely honest , until i joined this forum i had no concerns or worries other than how bad the painful itch and tearing of my skin was. i had heard of the possibility of vulval c.a. but i had never heard of fusing and shrinkage etc.

all of which i have ! However, for me it is still the constant daily itch and the tearing of my skin that gets me.

don't borrow trouble as they say. take care x

sorry FRANKIE, i posted on the wrong name !

Thank you so much. I'm sorry that you've suffered with the dreaded itch that doesn't go too ! it is just the worst !! i've tried a few creams / steroids but i actually found they made the itching WORSE ! ! Although it is a little reassuring to know i'm not alone in that someone else has the entire area involved. As you say i think sometimes as reassuring as the internet can be in educating ourselves sometimes it adds to our worries and when i was seeing so many images of people with patches and small areas it made me even more paranoid and terrified that there must be more to this / it must be something getting missed ! I feel reassured reading your reply though and the others here so thank you 😃 X

Thank you x I did say to my husband i'd hope if anything shows i'd hear sooner ... I've tried a steroid cream before but it made me more itchy and didn't make any real difference to the area or inflammation so stopped and she's not suggested anything else now other than to go and read up about the condition ! doesn't really leave me with much lol !

you are most welcome. i think my gynaecologist went with the least said approach so that i didn't panic about ..it might be.... now considering i am a nurse to trade , it never ceases to amaze and horrify me equally at what i know and more importantly , what i don't know about this condition.

the more you read about LS in these forums the more you understand that every one is struggling on trying to learn what works for them as there is no .. take this and it will fix it...

i have just started seeing a herbalist in Edinburgh to see if there is anything they can offer to help me with the itch. i have started using calendula oil , fingers crossed it works !!

( in conjunction with my steroids and moisturizers ).

Take care x

Hi Wendy--Does the calendula oil work? I have heard of this. I think there is a common trigger for us who suffer this strange disease. It is autoimmune, I believe because of the journal findings I read. (I have access to hundreds of med journals and read them) . I am trying to search through them for a clue and, if I find one, I will blast it across the universe.

hi, yes this is an auto immune based condition.

i have both rheumatoid and osteoarthritis mixed in

with type 2 diabetes and a few other things too.

the calendula oil is still early days for me but so far so good.

i have gone to an accredited herbalist for treatment. this isn't something from

chemist or Holland and Barrett type place.

it doesn't remove the itch but it is helping with my torn skin,

that will be the healing part to it. my body is a weird one and adapts very quickly

to changes in meds so i find i have to rotate my creams etc every other week

or they will become useless. with this oil it gives me the feeling that woohoo !

something non steroid based for a while. gives my skin time to breathe.

fingers crossed it works .

Pamela, Thanks for the report. Do keep us posted. I wonder if I can get that at the nutrition store here.. More research to do....

biscuit, just saw it but can't remember if it was on swanson or walmart; walgreens has a cream too. Not sure of any added ingredients though. Maybe the answer is to grow marigolds and smash up your own! I think lutein for eyes is also made from marigolds.

Jackie if you read Wendy's original post she has had the biopsy.

I think Wendy wants reassurance. Your comment would scare me!

That's good to know thank you, i'll see what my dr comes up with and mention that one to her 😃 Thank you x i'm glad you have found some ways to help and that are working well for you x

i have never heard of tacrolimus ointment but i shall look into it...thanks for sharing x

there is nothing wrong or stupid about faith based healing Susan.

with what we go through with this condition i believe we need all the help, physically,

mentally and spiritually we can get !

take care x

i agree i think we all find comfort and relief in many forms certainly doesnt make it stupid or mean it should be discounted because it doesn't fit the norm 😃

I'm so sorry I just finally came back manually and saw your replies. I didnt get updates for some reason. Anyway youre so welcome. hugs

Yeah my initial experience with obgyn was horrible. My obgyn did a deep painful biopsy in the wrong area that wasnt even involved and results came back as maybe allergic reaction so she didnt want to treat me for LS despite obvious atrophy, skin whitening, and papercut like tears that recurred at pereneum. Worse, she had me questioning my husbands fidelity suggesting it could be herpes and suggested blood tests despite swabs on cuts being negative twice. I did have herpes type 1 via blood test but couldve had it in my mouth without symptoms for my whole life so ultimately neither the expensive biopsy nor blood tests proved anything about my condition down there. I tried herpes treatments per her suggestion and it just got worse. She suggested another biopsy then and I basically told her to go to hel. Then I gave up for a long time on it altogether which was a mistake but I was severely depressed and lost hope at that point.

Anyway obviously no sex for a long time too painful, but when I started to lose all feeling down there in clitorus I really started to panic. Thats when I finally took a chance and went to a dermatologist with great patient ratings and he immediately diagnosed as LS and prescribed the .1% tacrolimus ointment twice a day for 6-8 weeks. It stopped it in its tracks and I've totally healed from debilitating itching, discoloration, and tearing...feeling came back too...now I just use occasional maintenance applications like before my periods which was usually when the papercuts had happened before. He said clobetasol was also an option if tacrolimus didnt work but prefers tacrolimus because he says LS is a long-term recurring condition and said that tacrolimus is safer long-term. If clobetasol is giving you this much trouble I hope you can try the tacrolimus ointment instead or in conjunction. It burned slightly the first couple of applications but was relieving immediately and relief lasted all day afterwards. I hope and pray it works so miraculously for you all too.

Yeah at first I thought it was silly but the health and emotional repair meditations have really helped me to sleep at night after all of the trauma. Luckily the emotional one is free and the health one was given to me by sister in law and I do them every night before bed. Like it reprogrammed my subconscious to think more positively which was a life-saver because I was really hating on myself before after all the trauma to the point I was having dangerous thoughts of self-harm. Looking back I cant believe it got so bad I have a wonderful husband and children who'd do anything for me. I guess I was just so frustrated and beat down after years of suffering and no answers or relief just more pain and medical bills and just feeling like a burden that I wasnt myself anymore.

Love and healing blessings to you all youll get through this dont give up. The body is amazing at healing itself if given a fighting chance. Were tough high-fives

wow sounds like you've been through quite a journey !!!

i've only been given Daktakort so far to try and when that didnt help nothing until these results come back so i feel in limbo at the moment but it hasn't been so long really yet and hopefully she will have a better plan when they are !

i think positive mindsets are massively important to how we manage any physical condition they are hugely linked and its definitely something im hugely aware of. I'm a student counsellor so always having my own self care preached at me by my supervisor so in concious not to let that slip because of this and also aware of how easily it could because of how debilitating it is!

thank you x