New - preliminary DX and advice needed

Hi all ive been having ongoing symptoms now for around 10 months (probably longer in reality) - mainly a horrendous itch and whitening that has now covered my entire vulval area with a rougher patch at the perinium thats the worse bit by far!!!! . initially thought it was thrush so tried otc stuff and went to gp who fobbed me off at firat when i persisted i was finally referred to gynae i had a biopsy a few days ago and hysteroscopy . they also removed a polyp they found. i've been given an appointment to get the results but it isnt for 8 weeks and that feels like a lifetime away ! i'm terrified it may be cancer and not LS , esp given how much there seeme to be ive seen pics on here of people who have shared and it seems to be more in patches but mine is literally the entire vulvar affected which terrifies me. I'm so worried and its not the kinda thing you have loads of people to chat about it to ! no idea how im going to get theough 8 weeks :(

Hi Wendy, I know its hard but try not to worry ! If it is anything really serious you will surely hear before 8 weeks. Have they given you any treatment to start? Steroid cream and moisturiser. I'm not an expert but from what I've read I don't think cancer is the white patches. You have joined a great group of people here and will get lots of advice. Sending you a hug!

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 !

wendy i posted on the wrong name, see below. sorry ! Pam x

Wendy, get over to the doctors and immediately ! Go to your OBGYN. He needs to do a biopsy on you to check for LS/cancer.

I dont know if anyone even sees my replies no one ever responds, but tacrolimus ointment was a miracle for me. A dermatolagist finally helped me after years of agony. My obgyn was a moron. Anyway apparently that stuff even cures skin cancers sometimes. There's hope dont give up. And this sounds stupid but I do faith based meditation healing from John Douglas for the emotional trauma and everything because was severely severely depressed over it. It helps too.

I also want to mention that I occasionally used this horrible otc spermacide called VCF for a couple years before this all started despite that it was always somewhat irritating. The last time I used it I had burning so bad I cried. I cant prove it but I think it caused a severe ongoing allergy that turned into LS.

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

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

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 !

As I understand it it's lumps and raised red areas that indicate possible cancer. And a dermatologist told me I had as much risk of LS becoming cancer as the whole population has of getting any kind of cancer, namely 5% chance. Do others agree?

HI Susan - for me I read every single comment that comes into this forum; it's amazing how much we can learn from each other that I don't think docs even have time to put the 2 and 2 together that we here can do - anecdotal evidence is Still EVIDENCE! smiles.

Anyway, your comment just now made me remember a comment from another forum last year about using vitamin E gel as a suppository at night as we go to bed and our own body heat dissolves the vitamin e as we sleep. here s one article I found just now:
the title of the NCBI . .. NIH study corroborating its effectiveness A survey of the therapeutic effects of Vitamin E suppositories on vaginal atrophy in postmenopausal women ahem - you don't have to be menopausal to take advantage of the benefits of vitamin E.

Wendy, I believe I have read that cases that have been left untreated for many years are the ones most likely to become cancerous. Using a steroid or immunosuppressant seems to make the difference. If your doctor felt it was cancer I'm sure there would have been more urgency placed on getting results back sooner. Maybe the test is to confirm it is in fact LS and not another dermatological issue. I know it will be a long 8 weeks just the same. May sound hokey, but in the meantime try to remind yourself of all the positives in your life so far.

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

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

SARB! I totally agree with you and your dermatologist. Everything I've run across this last year suggests that - IF one reads the info, instead of getting all worked up about the big C word (I've read about So many natural solutions to cancer, and have friends who have USED them that that worry just melts away) . I"m trying to refind an article that noted that fact but not coming across it just yet.
The whole bit about not worrying is based on, for me, doing my due diligence with maxing out my nutritional status. We all know that cancer is an "acidic" state, and we all "know" that our food supply is horribly nutritionally deficient from 50-60 years ago. We can take our cue from those two simple bits of intel and DO something about it.

Thanks for sharing your doctors statement - that just makes me feel even more confident, SARB.

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 .