Confused..
Posted , 9 users are following.
Hey all! I was diagnosed with LS in may.. been in this group for a while but finally got the courage to post and introduce myself.. had white patches and itching .. what were all your symptoms? Iv been given the hydrocortisone 1% cream to apply, this is all by the GP. .Should I see a gynaecologist or dermatologist or ask to be referred? Did u anyone see any changes in the Vulva is size or shape or anything I should keep in mind. Sorry for all the questions
Hope you’re all having a good day
0 likes, 14 replies
sues1958 V3301
Posted
hi,
Like you I have only ever seen my GP for this condition. It's been nearly 2 years since being diagnosed and haven't seen GP or any other medic for about 12 months. I use three differing strengths of cream..Dermovate ( Chlobestol), Betnovate and Eumovate. I also use coconut oil after every visit to the toilet. I have managed ok over that time without any bad flare ups.
Sorry I can't answer all your questions
Hope you are having a good day x
Ashley_Jo sues1958
Posted
Hi, feel I have to reply to you both. please don't sit back and let LS set in. You need to manage this condition. I've had it for years and wish i had help in the early stages. i eventually saw a great consultant but by that time i hadnt had intercourse for years, could not have a smear test and had lawful symptoms. HOWEVER, my consultant helped, I had surgery and the correct advice. It's not possible to cure but you can manage it. Strongly recommend using dilators. Best wishes
cheryl03187 V3301
Posted
i had itching and tearing during sex. i also got little blood blisters in the lips when wearing jeans or anything tight fitting . i have white patches but have noticed shrinking of outer lips. im only 31 and diagnosed around a month ago now following a biopsy. i used dermovate twice a week and hydromol every day. i would ask to be referred so you can get the right treatment straight away. I was told to only wear 100% cotton underwear or silk underwear. Not to wear anything too tight fitting i.e jeans or tights and not to wear underwear for bed. hope this helps, im also new to this and trying to find the best way to manage it
x
V3301
Posted
thank you for replying ladies... im only 35 ...has anyone noticed any chnges in their vulvar...?
should i ask to be referred to a gyno or dermatolgist ..or vulvar specialist ..?
my gp said she dont that i dont need any thing angthing stronger then hydrocortisone 1% ...
im so worried about it turning into cancer ...
karen23320 V3301
Posted
V3301- You don't really have to worry about the cancer aspect, it is extremely rare! I see a vulva specialist, my right labia is almost gone, my left is fine. MY clioral hood is fused ( having an adhesion release NOV 1 to unbury it). I was diagnosed in JUNE 18, in " remission since March 19. I have no pain, no itching. I wear cotton panties, use organic cotton tampons and pantyliners, use Clob 3x a week, moisturize with vmagic or coconut oil, bathe in 1/2 cup baking soda and 1/3 cup food- safe borax, shower with cetaphil and DO NOT EAT white sugar.
PS Clobetosol is 8,000x stronger than hydrocortisone.
And I follow an autoimmune vitamin/ mineral regimine of 26 vitamins a day.
Guest V3301
Posted
Only a very small percentage (~5%) turns into cancer but that is nothing to laugh at. A 1% cream in my opinion, is not strong enough. Most of the medical journal articles say clobetasol (dermovate I believe over in the UK) is needed to halt progression. Don't settle for a GP. get an experienced gynecologist.
frankie68 V3301
Posted
Hi, my advice would be to get a referral to a gynaecologist and or dermatologist. The advice I have been given is dermovate , a stonger steroid, and moisturiser. It's important to follow a strict regime.
Hope you find the right advice, good luck!
sarb73328 V3301
Posted
Definitely see a gynae or dermatologist for more informed care. Try not to worry about cancer. I was told by dermatologist that the risk is the same as any of the population getting any form of cancer: 5%. That put it in perspective for me. You will gradually learn how best to manage it, which will be individual to you, and then it won't seem so horrendous.
Good luck. We are all here for you.
Guest sarb73328
Posted
I agree with sarb here. You are more likely to get cancer from having that cell phone stuck to your head.
V3301
Posted
thank you .. feel little better
wil defo ask my GP to refer me .
confused as to gyno or dermatoligist
sarb73328 V3301
Posted
V - you could ask your GP which he/she would recommend. In my area in UK I was told both gynae and derm clinics have specialists in LS. I settled for dermatology because the gynaecologist I had seen was a man and at the age of 66 I didn't feel comfortable with a man examining me.
V3301
Posted
hey ladies! thank you for your advice .. wil speak my GP and ask her .. do you all been referred or seen private gyno..demartologist vulvar specialist..i too wouldnt feel comfortable with a male gyno or dertmo ..
what do u mean by fusing? did anyone feel pain or like a pricking feeling when sitting down or discomfort? or wiping? does anyone use diff type of tolite tissue..
im gonna ask her why she dont feel the need that i sont need anythiing stonger. .. has anyones white pstches reduced or gone.. or do they stay permently like my GP said. im so glad u found this group.thanks for all your help amd advice
Guest V3301
Posted
Originally, back last Dec, I had 2 small white patches that Gyn #1 said "Oh this is LS." She gave me clobetasol which I used for a month and the white patches went about 95% away and have not come back. There's just the hint of where the white was, you can barely see it but I am still sore. Are you itching? Moiturize, no fragrances or washes. No soaps....Vit E oil or coconut oil. Eucerin helps.
V3301
Posted
my inner labia minora left side is ok but the right side looks sighty enlarged ..again gp said it all looks healthy then before with the 1% shes given and go come baxk n c her in 3-4 months for check up..
what other changes did u ladies c .. does it ever go back to what it was ..?