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[Cazikins]

Hi again Rebecca,
The FB group is private which means that only members of the group can see what other members post - but I very much doubt your husband is... .

A problem this would cause is that the groups admin may pick up from your husbands name that he's a man, which is a definite no no. The other issue you would have is that your husband will see what you write in the group.

You could set up an account for yourself - it's quite easy to do. If you just use it for the private FB group you will get a lot of support. No one apart from members will know you are on there, plus your could use an alias name rather than you actual name.

[r.peters]

Thanks for the FB information Cazikins...

[Bungo]

Hi Rebecca

I don't have any advice to offer, just empathy as I have LS too. Fortunately, for me, it's only mild so I just get intense itching, no rash or visible skin probs yet. My GP prescribed Betnovate with instruction to use for a week but I found that single applications just when I start to itch is enough for me. I also use Dermol cream for washing my vulval area every day.

I have no understanding of steroid creams and whether any particular brand suits an individual more than another, but may be worth asking your Dr for a different cream to try?

Really hope you find something that works for you as I know the itching drives me crazy!

Suzie

Susiemc, was also  recently diagnosed with mild LS based on visual inspection..I also only have itch that comes and goes and occasional redness. Was given mild.hydrocortisone cream and very vague instructions to use twice a day until itch went and then only use when a flare.My itch can be there in the morning and gone a few hours later. It can be there 2 days later again and comes and goes in this pattern so no real flares at such. So I never know when to use the steroid and for how long etc. I initially only used for 4 days as wasn't given clear instructions.  Everyone else I hear about has to use maintenance twice a week so wondering if I've been  given wrong advice. Also wondering if it actually is LS, can't understand how gynae can tell from just looking. Gynae also told me I don't need vagifem as taking systemic hrt!  Surely needed for LS also to keep area moisturised?

[Suziemc]

Hi Bungo

I've been reading what I can and get the impression that using steroid cream regularly might help with prevention of flare ups. So I'm now trying just a pea size amount of betnovate once a week, even if I'm not itching. If I got itchy I'd probably use it then too. Only on second week so no idea yet if this is beneficial! I'm due to see my gp in a couple of weeks to have my mirena coil checked so I'm going to ask her what her opinion is on weekly 'maintenance' dose of steroid.

I've joined a useful group on FB - Lichen Sclerosus UK Support Group - where I'm learning lots (mostly that I'm getting away lightly at the moment and that my GP is absolutely fantastic!)

Good luck with your symptoms.

[Bungo]

Thanks Suzie, I also joined that group and that's where discovered re using frequently. I don't know why wasn't prescribed betnovate . Worried too about causing thrush from using steroid so I've occasionally used Daktacort which  had at home anyway.  Curiosly my 85 year old  mother has been using canestan HC for years now once a week so wondering if she also has LS. She said it's working well for her. Hope you get on ok too with treatment..I'm sick of the unpredictability of it,not knowing when wake up if will be able to wear underwear/cycle etc

[Talli]

Hi r.peters!

I’ve have L.S VA and vulvodynia, it’s no joke. I feel for you!
 I used Dermovate when it was bad which helped.
And I personally wouldn’t wear the silk underwear. It can make you hot ‘down there’ and increase the itch. My specialist recommended pure cotton non dyed (so white) underwear for it. I wash with Dermol and protect the skin with cetraben.
🙂

[Toughtimes]

Also re regime there is a lot of out of date and inaccurate info out there re LS on the Internet. Approach used to be to treat with dermovate and then only re-treat if a flare. But the approach most consultants take now is to prescribe a maintenance dose of dermovate once or twice a week (pea sized amount) to keep things under control. Betnovate is weaker than dermovate I think.

Dermovate ointment works better than the cream as adheres and absorbs better.

Daily moisturising is important - Yes OB is brilliant for this and lots of info on their website re benefits of this for lichen sclerosus and then topical oestrogen can be beneficial too.

Epaderm cream is great for emollient in the shower. Epaderm ointment is great as a barrier cream ie if go swimming or to protect from urine.

[r.peters]

I have an update ladies...
I was suffering so much I went back for another private appointment only to be told I had Acute thrush! told to stop using the Dermovate ointment and Ovestin and take a thrush tablet by mouth for 7 days and apply Daktarin cream for 7 days. When I completed the 7 days, I can't tell you how much better it all is down there and all the redness has also gone from my inner thighs! I am supposed to then continue using the Dermovate cream every other day on top of Vulva  but to be honest I'm NOT sure if where I'm putting it is ok...
Anyway, having been taking Ovestin for Vaginal Atrophy for many years I was worried about stopping it but I felt much better. I started the dose again and my clitoris and surrounding area feels aggravated and I am getting the occasional sting again and redness. I wrote to the Consultant and she said to ask the GO for Estriol 0.01% vaginal cream as that may irritate less. Or use Ovestin once a week or use fortnightly...
Has anyone else had Ovestin aggravate them after using it for such a long time ?
Thanks ....

[Dierdre]

I've been using it for years and yes it still stings slightly so I apply Bepanthen on top of the Ovestin and that stops the stinging. I think others mix it with either a moisturiser or olive and bee cream.

[Emma]

A UK government petition to raise awareness of Lichen Sclerosus.
Could you sign and share please? 
https://petition.parliament.uk/petitions/632780
It is asking the UK government to fund research, and increase funding to improve awareness and treatment of LS as early treatment is so important to prevent more advanced symptoms.

This petition is being shared on Lichen Sclerosus and Vulvar Cancer UK Awareness website, Facebook, twitter and Instagram pages which also have lots more info.
The website link is https://www.lsvcukawareness.co.uk/

[Haydo]

Done.

[Haydo]

Bumping this in case it’s been missed.

[BooBoo21]

Hello all, I have just been diagnosed with LS.  I thought I had Vaginal atrophy and that I could not get on top of it.  I have been back to the GP at least 6 times in 6 months regarding it, my first flare up was 7 months ago.  I saw a different GP each time, I waited for 6 weeks to get an appointment with a GP I had a telephone consultation with a GP re HRT who I found caring and listened to me.  She examined me and prescribed steroid cream stating I may need to be on it for life x2.  She was very helpful and had trained in the local Vulval clinic (who knew there was one).  I am very upset and disappointed, I knew something was wrong as it was so painful.  Ovestin cream made me much worse and in fact I consider it exacerbated the symptoms significantly.  I am now on Vagifem.  I signed the Petition.

[Flossieteacake]

Hello all, I have just been diagnosed with LS.  I thought I had Vaginal atrophy and that I could not get on top of it.  I have been back to the GP at least 6 times in 6 months regarding it, my first flare up was 7 months ago.  I saw a different GP each time, I waited for 6 weeks to get an appointment with a GP I had a telephone consultation with a GP re HRT who I found caring and listened to me.  She examined me and prescribed steroid cream stating I may need to be on it for life x2.  She was very helpful and had trained in the local Vulval clinic (who knew there was one).  I am very upset and disappointed, I knew something was wrong as it was so painful.  Ovestin cream made me much worse and in fact I consider it exacerbated the symptoms significantly.  I am now on Vagifem.  I signed the Petition.

So sorry to hear this BooBoo. I can understand why you are feeling upset. Perhaps you would find it helpful to join the facebook group mentioned as it sounds like a very helpful place.