Lichen Sclerosus

FormerMember
FormerMember
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After many years of suffering with a itchy vulva, I was finally diagnosed a couple of months ago by a fantastic GP with Lichen Sclerosus.

For many years I was told by numerous GP’s that it was thrush, a skin condition caused by the menopause, given many different types of creams, put on HRT & probably the most embarrassing & humiliating experience, sent to a STD clinic.

A few months ago the problem got worse so I went & saw a lady GP, she examined me & told me it was LS. I was prescribed a steroid cream which has helped but not cured it. She asked to see me every two weeks & on my last visit she found a white lump inside the vulva. I was referred to a gynaecologist & got an appointment 2 weeks later.

The gynaecologist has now referred me for an urgent biopsy, which will be done under general anaesthetic, in 2 weeks time.

Please forgive me if I am using the incorrect site but I’m at my wits end & so worried and I just had no idea where I could find other people who have suffered with LS as it seems to be such a taboo subject and nobody knows the real cause or if there is a cure.

Obviously I do not have a diagnosis yet but because I’ve had LS for many years & just lived with it, I’m now concerned it may have been left too long. 

I’m 57 years old & was menopausal at the age of 45.

I really would appreciate your comments

  • Don't know if it is different for boys but my GP prescribes Betamethasone 0.064% & Clotrimazole.1% (Usual brand I get called Lotriderm, 

    <<hugs>>

    Steve

    Community Champion Badge

  • FormerMember
    FormerMember

    Hello,

    I have had the same experience of misdiagnosis--very frustrating.  I now have a specialist at Stanford University, but I have also found a Facebook page for LS sufferers which has proved to be very helpful.  Good luck.  At least now we have a name for the condition and I'll no longer be tested for herpes to no avail.

  • I also take a antihistamine to help with itching 

  • Hi Clare, does it have a brand name and available off prescription? For some strange reason the itch is worse at night. Keeps me awake... 

  • I just use the cheapest ones, all different brands.

  • FormerMember
    FormerMember

    Hi Surfside,

    I hope you have had your biopsy by now, just thought I'd let you know that although I had convinced myself my result would be Cancer, it was infact benign. Had to phone the hospital again for the result still no letter, really want to see written down though.

    Pray your news turns out to be good too. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Neeno

    Yes I had mine done. The gynaecologist took 4 biopsies, I was only expecting two but she noticed two areas near my anus she felt needed investigating.

    Feeling pretty sore at the moment

    I have an appointment to see her again in the 22nd November. She is marking my results as urgent. Hopefully they will be back by then.

    So pleased your results were benign and I wish you all the best for the future x 

  • I have been driven frantic with this condition for years. One doctor gives me an ointment then another doctor says don’t use that, it makes the skin go thinner! 
    It has  turned cancerous and I’ve has surgery several times, also chemo.

    i would like to try this Korean treatment but cannot fathom how to order it.  Can someone help me order it? Isn’t it available in the uK?

  • FormerMember
    FormerMember in reply to collegegirl

    Hi collegegirl, 

    These are the ingredients of the cream I'm using in Korea:

    Betamethasone Dipropionate 640 μg / g, Clotrimazole 10 mg / g, Gentamicin Sulfate 1 mg / g  

    I saw on the internet that there's a cream in the UK with similar properties, but please, ask your doctor if this is the case for you. Not all creams and treatments work for everyone.  

  • I too was not aware what was going on and just thought it was due to sitting at work long hours and the heat but it got worse so saw my GP who referred me immediately. I had various examinations and they did a biopsy. I have heard a week later that I need to go back for another biopsy. I find it a very debilitating thing to have and before these appointments I was literally raking my skin and not sleeping at all.

    The cream I am using Clobetisol, is very strong and I use something called Epimax which I can use to take the stinging away and it can be used as a wash in the shower so please get some as it goes help. I will update on second biopsy once I hear.

    Take care everyone