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I think i've had LS for a long long time but not diagnosed yet. I've tried a lot of things for the itching even tee tree straight from the bottle but it still came back. It disrupts my sleep all the time and as i'm a carer I need sleep. I have just sent for some paladin cream from ebay, has anyone tried that ? My surgery doesn't seem interested and nurse has just been prescribing cortizone cream but I worry about thinning of the skin. So confused about what to do next. I have dark labias and some small dark spots pin head type but not raised, a bit like blood spots. Good to know you are there. Nice to meet you.

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  • Posted

    Hi 7heven sorry to hear of your troubles.  My advice for you would be to ask your Surgery for a referral to a Specialist Gynecologist as soon as possible. If there is a possibility of LS ask for a biopsy BEFORE starting to use the steroid.  The reason is that if you start the steroid first it can hide the LS and then make diagnosis difficult and confusing, which was my experience and I believe held up my recovery. The biopsy for me was ok and I was reasonably comfortable straight after so I wished I had had it straigh away and then started the treatment - that way I would have only used the steroid for 2 weeks before the result minimising the damage if it wasn't LS.  In my case the biopsy came back non-specific inflammation so I don't know and will probably after to wait for another major flare up and have another biopsy. I have since seen 2 new specialists who told me that they would have done the biopsy before giving me the steroid to use.  You don't necessarily don't have to wait tomstartnusing the steroid to get some relief but at least the biopsy is done on neutral cells.  Hope you understand how I have explained this. 

    In the meantime try some coconut oil for the itch or aloe vera  - start with small area to ensure it's not going to make things worse.  Rinsing with warm water is helpful.  Pat dry and no soaps or creams down there. There is lots of good advice on this site that can help you so please read through all the posts.  Good luck I wish you a speedy journey to more comfort. 

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  • Posted

    I was missed diagnost for years.  Doctors though I had yeast infections.  LS leaves white patches on your skin.  It get extremely itchy. That's the histamine that your body produces to ride of foreign bodies.  I've been told it's an autoimmune response only with LS people we are literally 'allergic' to ourselves.  I've also been told that it is hormone connected.

    I don't know what those dark spots mean.  Doesn't sound like LS.  I would suggest a biopsy.  Yes, it's a little painful but you will get a diagnosis and you can go from there.

    Hang in there, know there are others with the same issues as you.  Get a good Doctor.

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  • Posted

    Hi 

    Have you tried the tea tree antiseptic cream. I find it very soothing and helps to heal too, even my husband has started using it for fissures too and finds it more healing than anything docs give him.

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    • Posted

      I have just started using Tea Tree with eucalyptus australiana and lavender oil. It is very soothing.
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  • Posted

    Hello 7heven....You don't mention whether you have the tell tale white patches that could indicate LS although you don't neccessarily have to have them, it is a common sign and if you have LS they may show later.

    Your pinhead itching may be Urticaria(hives)

     I don't have itching myself but many report good relief with the use of bicarbonated soda solutions for soaking and rinsing.

    A suitable cream and moisturiser for itch and soreness would be one of the emollient lotions or creams that is also used for ezcema. I have used Dermol lotion and Cetraben a cream.

    If you are using concentrated tea tree oil straight from the bottle! don't.

    It can make irritation in delicate skin worse.

    I think your lack of support from your surgery is very poor.

    Request a referral to a dermatologist or see a dirfferent doctor if you do not get a satisfatory response.

    Gynaecologists are often seen but in your case because of the pinhead skin condition, maybe a dermatologist would be better.

     

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    • Posted

      so if the gyny can see white patches is that a definite LS? i have an appointment this week and sods law i`m not sore or itchy! just hope they can tell me for definite or just see me at a future date

       

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    • Posted

      No nothing is definate by just looking susan but after initial examination if he suspects LS the gyn. will probably say highly likely or nearly 100%certain.

      You don't necessarily have itching or soreness to have LS although white patches are usually a give away sign.

      My  consultant gyn. does a biopsy then results before he gives a definate confirmation.

      A biopsy also verifies or eliminates other possible issues of vim and malignancy.

      He doesn't prescribe steriod treatment until he has confirmed results of condition from a biopsy.

      You may have a different experience as not all proceed with a biopsy but if it is suggested I would have a biopsy to clarify the condition.  

       

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  • Posted

    Hi 7heven,

    please try and get a referral to a vulva dermatologist. So far I've found the dermatologist more helpful with similar symptoms to you as opposed to the gynaecologist who says they can't see anything and it's all in my head!

    in regards to the spots, I too had what started off looking like a little red/brown flat spot/mark, unraised. It then spread a bit and once I learn a little more about LS for me I discovered this was where my urine trickled onto. Now I'm aware that the skin in this area doesn't like the urine and so for me this had become inflamed. 

    I had three biopsy's, left labia minora, perennium and also this spot. The labia site came out as LS and the other two as non specific inflammation. I believe it's all connected.

    i now use witch hazel and pat dry after each toilet visit and I also use coconut oil.

    i use Betnovate a couple of times a week and see the dermatologist every 4-6 months.

    flare ups for me are less frequent but I'm still shrinking!

    let us know how you get on.

    Samantha

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  • Posted

    Thanks for all your replies and I have taken everything on board. I will request a specialist vulva dermatologist visit and go from there. I have also been using a little canesten 1% cream morning and night to relieve symptoms, but sadly, dont know if I'm doing the right thing. I have also been using diprobase cream to wash area in the shower. I might try the soda washes now. Again, thank you so much for replying and I will get back to you later.
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