Newly diagnosed with Lichens Sclerosis

i can remember how frightened i was, when i was diagnosed with LS years ago now! my advice to you is to wash with water every time you go to the loo pat yourself dry and use coconut oul or emu oilI use dermovate twice a week at night, which really helps. try to avoid sugar i use pads, as i find the oil is messy on underwear Good luck to you!

using the steroid creams is also known to give you thrush. every time I have a flare and go back up to my stronger dose it gives me thrush as well! test done every time at the GP confirmed it. so annoying because as if I'm not in enough pain already then thrush is added in for good measure! struggling with a major flare since Sunday after having sex. everything done down feels like its on fire 😭

hi everyone,

im also new to forums but my wonderful stepmum found this for me as im really down with my LS diagnosis, i get it in the vagina area and internally pretty bad, my GP missed it for years and i spent my whole uni life strggling with it, going to sexual health clinics who said it was BV, thrush, etc i was on antibiotics every month pretty much for 3 years until i went to a new sexual health centre and they were amazing! ive been on dermovate and emollients for three months, im now referred to dermatology who have said its eroded so much aanatomy from the non diagnosis i need dialators and then surgery because of how bad it is. any recommendations to changes of life would help, your right in the sense of not being necessarily terminally ill but they said its a life long manageable condition, just remember your not alone, thats what im trying to tell myself

for the itching you can sit in baking soda and borax water make it warm but not to hot. i quit taking my steroids because it wasnt helping at all. not i have tried emuid but that didnt help at all

i have the same thing the only thing that has helped is i was sitting in warm water with baking soda and also borax laundry detergent. i was on a site from friends from the uk and they told me different things to try. As mine now in a very bad state. its so red it looks like it was painted. so i read that you could take clay and mix it with apple cider vinegar that has the mother and make a paste. Lie down and let this dry . And then wash off with warm water. It took some of the itching out. But it just dont last long enough. i had to go to the nurse practioner to day and she told me to see a dr that specialize in lichen.

I was on the clobetasol for many months, but after the inflammation settled down I was able to transition to tacrolimus. I couldn't use it at first because it caused too much burning. I have been on that for a maintenance for over a year now, and have only had 1 or 2 minor flare ups. It does not harm your skin like the steroid. It can be a painful disease, I hope you feel better soon!

Dear Becca86047 and everyone on this page,

i really want to thank everyone here for the information they are giving. it's really helpful psychologically and physically! I hope everyone is in the process of healing.

I wanted to ask some questions because at this point, my diagnosis is a bit lost between lichen sclerosus and vulvodynia. a doctor took a biopsy and it showed "non-specific inflammation" but no lichen sclerosus. the doctor said that it might still be an early phase lichen sclerosus or that because i was already using the steriod cream to calm my symptoms, this messed up the result and made it look like it's not lichen even though it is. my story started with fungal infections which developed into episodes of symptoms without a fungal infection (verified by a swab). the symptoms at this point are mainly a burning sensation on my vulva with a stinging feeling that comes and goes. sometimes the area turns a bit red but not drastically. also there is no intense itchiness (maybe a mild one every once in a while but also not drastic) . sometimes the perineal area also feels very tender and sensitive. i have used alocom cream (potent steroid) for three weeks everyday (to stop the inflammation observed in the biopsy) then dermovate cream (highly potent steroid) for 2 weeks every other day and now i`m on dermovate once every 3 days. I'm starting to see white spoting on my vulvar skin (where I mainly apply the steroid cream). and also i don't feel that the steroid cream is doing anything 😕

my questions are:

my burning sensation and sensitivity increase through out the day. in the morning, i'm more or less fine and it goes worse until the evening where i have a strong burning sensation and high sensitivity. does anyone have such a pattern of pain?

did anyone notice white spotting on their skin after using the steroid cream for long? because apparently white spots could be either from the steroid cream or a symptom of lichen sclerosus. also, are the symptoms you get limited to the white spots you have? because in my case the symptoms are not linked to the white spots.

thank you in advance for your replies 😃

I also didn't want to continue on steroid creams. I use mg217 from Walgreens or you can order it from Amazon. I apply it after I shower. It is a coal tar cream. I also do not wipe after bowel movements, but head straight into the shower. I'm going to buy a bidet soon! I try to not use soap at all to wash down there, but if i do, I use Cetaphil or Cerave body wash. I was diagnosed with a punch biopsy.

I was also recently diagnosed. My only symptoms were some pain during sex and mild spotting afterwards, but because I have lichen planus in my mouth it was suggested that I start clob. That was 2 months ago. I followed the course and when I reduced the amount I started to have a whole wack of issues I never had before, redness and burning everywhere, clitoris is no longer visible, burning pain when I walk, feeling like I have to pee all the time etc etc. I truly wish I had never started the steroid and I'm now looking for alternatives. Sorry if this isnt an uplifting post, but I'm in shock by the sudden onset of all these things after treatment and want to warn people that it can have adverse effects.

i have recently been diagnosed with lichen sclerosis. Can anyone tell me how long the steroids should take to make a difference. i am still incredibly sore especially after going for a wee and applying moisturiser. I have been applying steroids twice a day for 3 days. whats the best steroid cream. i cant believe how much it hurts at times. Any advice appreciated.

ive been diagnosed fir 6 months... had a confirmation biopsy . Using Clo for 6 months i see no improvement . The pain is awful around my rectum, still raw and red . Happy to find a support group

Hi everyone,

I am a 30 year old female, no kids yet but thinking of getting pregnant soon. I've had a mild version of LS for a year and a half now. It's mainly itching but pain is rare. I apply clobetasol everyday, which I didn't even think twice about until recently when I stopped and it was unmanageable so had to get back on it.

I have been looking for alternative treatments and came across something that has been mentioned on this forum as well - the MonaLisa Laser Therapy. My concern with it is:

1. It seems to be for menopausal women. The clinical trials have all been for women with menopause. I am not that
2. Are there any studies or any women out there who have had this treatment and went on to get pregnant and have children?

I am wondering if I should wait until after I have kids....thoughts?