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[Pimples]

 :)Hi .Newbi here .post menopausal suffer with health anxiety all my life ,64 years young. Last year I was diagnosed with LS .I am so low about this ,I was given dernavate it worked really well ..I'm in a new flare up and have started using the ointment once again..I am so petrified this will turn to vulva cancer ,I can't stop checking all the time every day ,my anxiety is through the roof .would love to here from any ladies with this horrible condition which can not be cured .😘

[Flossieteacake]

Hello Pimples and welcome to the forum. I am sorry to hear you are having a LS flare. I have recently found out I have this myself and there are a few members on here that have it too.

Health anxiety really is horrible and distressing. Although it is difficult not to, it may be making you feel worse by checking the skin daily. If it helped to reassure you then how about getting your skin checked once a year? I am sure your GP would agree to this.

Some women who are diagnosed with LS actually have vaginal atrophy. This is when lack of oestrogen can cause the vagina and vulva to be sore, dry, itchy, and mimic UTI's. It could be possible you actually have VA. Localised oestrogen such as Ovestin cream would be helpful and it actually can help LS too.

It is great you have found this forum as you will find lots of support on here.

[Haydo]

Hello Pimples.  Welcome to the forum.  I have LS and I also have vaginal atrophy.  Usually with LS you are told to use the dermovate twice weekly as a maintenance dose once you have got it under control.  I don’t know if you have been doing this, as you say you have started using the ointment again.   It is horrible to feel so anxious about things, and I think we all go through periods when we are having a flare up when we get overly anxious.  As Flossieteacake says, local oestrogen may help you too.  I also think it may be a good idea to be checked over by your GP on an annual basis or maybe more frequently by the practice nurse.   Perhaps if you tell them how anxious you are they would agree to this, at least initially until you are less anxious about it all.

[CLKD]

 

There are several threads about Litchen Sclerosis on the Forum - if you do a search they should pop up.  Make notes ;-)

Do read 'the bladder issues' and vaginal atrophy threads.  Let us know how you get on.

[Suziemc]

Hi Pimples

Another LS and vaginal atrophy sufferer here. I am fortunate in that my LS isn't too uncomfortable most of the time but I am noticing more and more fusing. I've started to apply my steroid cream (Betnovate for me) weekly to try and keep control and hopefully avoid a flare up.  Not sure if you are already aware but, just in case you're not, there's a brilliant Facebook group called 'Lichen Sclerosus UK support group for women'. There's lots of advice, sharing of information and endless support - I've found it a brilliant source of info.
Please try not to worry, this is a more common condition than I ever imagined it to be.

Susie

[CLKD]

 

[Dierdre]

Cancer from lichen sclerosis is extremely rare and possibly when the lichens has not been treated for many years or even at all.  The vulva specialist  prescribed Ovestin on the vulva every night as part of my treatment as low estrogen is a trigger for lichens and usually accompanied with atrophy. Dermovate if I start to feel it flaring which thankfully has not been for quite a while. Although i have used recently for a atrophy flare up just in case it triggered.
Stress is a big cause of flare ups which I know is hard to avoid. Dont use soap just water or emollient to wash. I wash my pants in 60° wash, no detergent or conditioner.

[Pimples]

Hi ladies thank you so much for your replies it helps to know we are not alone in this weird condition...Can anyone recommend a good coconut oil for moisturising as Iv learnt it is very good although they said it has to be emulsified coconut oil 😲I have no idea what this means and where to buy it...any advise would be really appreciated.❤️

[Cazikins]

:)Hi .Newbi here .post menopausal suffer with health anxiety all my life ,64 years young. Last year I was diagnosed with LS .I am so low about this ,I was given dernavate it worked really well ..I'm in a new flare up and have started using the ointment once again..I am so petrified this will turn to vulva cancer ,I can't stop checking all the time every day ,my anxiety is through the roof .would love to here from any ladies with this horrible condition which can not be cured .😘

Welcome Pimples,

I'm post menopausal too & 65 years old (soon to be 66  ).

I was diagnosed with LS about 2/3 years ago. My advice is to use the Dermovate every day till under control then as a maintenance dose i.e. twice a week.

Do not stop using it -  It is very unlikely to stop I'm afraid.

 This is the only way to get on top of it.

That doesn't mean you are doomed, it's just another health issue of being a woman that can crop up.

Get it checked yearly or earlier if you notice any changes.

And if you are on FB I also recommend the LS group, there is a massive amount of information & support.

Let us know how you get on

Cazikins xx 

[Pimples]

Hi .thank you for your help .I was not told to keep using it when under control ...I will now do this ..Iv heard that coconut oil is really good as a moisturizer.would you recommend coconut oil or have you never used it 😘

[Cazikins]

Hi .thank you for your help .I was not told to keep using it when under control ...I will now do this ..Iv heard that coconut oil is really good as a moisturizer.would you recommend coconut oil or have you never used it 😘

No I can't recommend coconut oil as I don't need it tbh, the Dermovate is enough to keep on top of it....plus you don't need to buy it as it's free on prescription. Give the Dermovate time to work as it wont happen overnight. It's a bit like a daily routine as in facial moisturiser etc.... I mean would you stop using it if it worked.  , well that's the same with Dermovate.

Please let us know how you get on. This was all new to me too, just like you Pimples  but I researched it, found forums & got there in the end.

Love Cazikins xx 

[Haydo]

Hello Pimples

I think it’s trial and error to find the moisturiser that works for you.  Coconut oil made me very itchy.  I use organic castor oil (which was suggested on a LS Forum) which is very soothing, although do not use any moisturiser until at least an hour after using the dermovate.   I was also prescribed to use topical oestrogen cream daily, and told to rub it in well around the vulva, by the vulval dermatologist I saw.   

[Pimples]

Thank you ladies .yes it will be trial and error I will stay InTouch so glad I found all of 😘❤️

[Dierdre]

Hi .thank you for your help .I was not told to keep using it when under control ...I will now do this ..Iv heard that coconut oil is really good as a moisturizer.would you recommend coconut oil or have you never used it 😘

I was told to use twice a day for a month if needed, when having a flare up then twice a week for two weeks if needed. After that no need to use it as I could go for years without another flare up.  I've never had to use it more than a couple of weeks continually and just use occasionally if I get a sore patch for a couple of days.