Lichen sclerosis - diagnosed today

[Count2three]

Been diagnosed today by GP. For several months I've had itching and pain but put off going to the doctor. Took a look down there yesterday and saw some white patches so hot-footed it today. I've been given steroid cream and dermol and instructed to return in 4-6 weeks.

Since returning home I've searched forums and am now freaked out. I knew the cancer risk to be higher but on the Macmillan forum it would seem practically every LS sufferer developed it. Perhaps I'm being an idiot, what would you expect on a Macmillan forum etc. I suffer from health anxiety anyway and this is testing me.

Any other sufferers and/or advice?

I should also mention I had a weird mouth thing going on a couple of weeks ago which my dentist put down to a virus. White patches on my gums. I'm wondering if the two are linked.

I've got a mild case of LS, it cleared up using the cream, sometimes flares up a little every now and then but goes again if I use the cream within a few days.
I've had HPV for a while and think that's what triggered it, definitely stay away from google! It scared the crap out of me when I was diagnosed but the reality of it hasn't been that bad!

I was diagnosed 2 years ago. Regular check ups because of the slightly increased cancer risk.
Use the steroid to get it to calm down and the dermol to moisturise.
I was advised to gradually reduce steroid cream once things settled. I couldn't find a moisturiser I could get on with and I felt unable to reduce it because I had regular pain. I did not realise that prolonged use can cause pain similar to lichen sclerosus. After being gently told off by my Consultant, I have now found diprobase, which works well. The other thing is avoid soap or shower gel on your vulva. Plain water or E45 wash cream is recommended.

Thanks so much for the quick replies. Inevitably I have a couple of questions:

Fatshit How did you know you had HPV?

Hedwig You shouldn't moisturise too often? Why is that? I understand limiting steroid use but I wonder what's wrong with moisturiser.

Coconut oil any good? I have heard that it cures everything!

I've had a look at the yahoo forum as there's loads of info on there, including recommendations to take vitamin D supplement and to use organic sanitary products.

I want to arm myself with the best information but I don't want to terrify myself with worse case scenarios.

No, you definitely use moisturizer as much as you want.

HPV is tested for on your smear test, I've had them annually for a while due to this.

May I ask how you were diagnosed?

I was told I had LS but then had a biopsy to confirm and it came back negative. The gyneacologist scratched his head about it all for 4 years until I gave up and went to a dermatologist who diagnosed eczema - it is rare but it can happen. Even rarer it's an allergic reaction to œstrogen. When I was pregnant and then breast feeding all my symptoms disappeared due to low oestrogen.

I would ask for a referral to a specialist dermatologist. And if you have a biopsy make sure it's a dermatology pathologist who looks at it.

Sorry forgot to add...what steroid cream has he given you? Always start with the lowest possible concentration and work your way up if it doesn't work as you will probably need to use it long term.

Boo I was diagnosed by my GP but she is the gymae GP at my surgery. She diagnosed by sight and said it looks classic LS. I guess by the white patches. Did you have them too? She also took a swab, I believe. I am to go for a biopsy if no improvement within 4-6 weeks.

I'm using Dermovate daily for two weeks then am to reduce to twice weekly for two weeks. No idea of I'm using too much. Having a DS with eczema, I'm aware of the risks though.

I've found loads of advice on a yahoo forum. They seem to be advocating oestrogen and testosterone creams. I may mention to GP when I return.

DSis worried like you but is still fine after many years.

Count2Three I had white patches on my gums and the dentist said it was lichen planus, an auto-immune rash.

Yes I have the white patches as well. Please mention eczema to her, it's rare but it can happen. The presentation of the eczema is identical to the LS (in the early stages of LS) so they can't be distinguished by sight alone.

If you use an oestrogen cream and things get much worse remember the possibility of an oestrogen allergy. At my worst I wanted to take a knife and scratch my labias (I didn't of course but the itching was driving me crazy).

I feel your pain. I've been using the steroid cream since march and still get flare ups. Definitely an improvement though. My GP referred me to the Vulva Clinic in hospital but no sign of an appointment as yet. My GP was wary to give me the steroid cream as by the time the referral appointment would arrive then my symptoms may have disappeared but I needed something to relieve me. I had suffered for as long as I can remember, 15yrs at least but I was embarrassed (I know it's stupid) to get it looked at.

It was only that the nurse at my last smear advised me to get it checked by the GP. I found it strange that after two births, 2 d&c, up to date smears etc, that no consultant, midwife or GP had noticed it before. All hail the new nurse at my surgery for helping me be able to sleep at night!