Undiagnosed but sure I have LS

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I have had lots of exclusion tests but no white patches so GP is not sure re LS, I'm in a massive amount of pain can anyone advise anything on a very emotional sobbing itchy wreak on a Sunday night

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8 Replies

  • Posted

    Hi I did not have white patches,but I did have some sores,I went to hospital to see the  consultant I was told it was ls.

     

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  • Posted

    Eveneing Ribi

    I have LS and do not have white patches. As horrible as it may seem my consultant showed me all on the screen next to me and it looked awful but no white patches. She says I now have excema there and is treating with 3 months of dermavate then if no improvement is taking a biopsy, saome days it works others it doesn,t so I'm thinking there isnt a cure , well I've been told ther is no cure. I can't give you anything but my empathy and hope you feel better. I'm with you spiritually.

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  • Posted

    Mine started out just being itchy, unbareable itching, no white patches at all... I used Vagisil to help numb it because I  was brusing myself from the itching.  I was applying Vagisil probably 4 times a day which is the limit.  I read about the cider vinegar and started trying that and it helps so much.  I just mix 1  T to a cup or more of water... I mix it much stronger but that is how it was told to me.  I mix 1 T to 2 or 3 oz of water.  You might try the weaker first then get a little stronger if needed. You can use regular cider vinegar but I use organic.  I use a small spray and spray it on then sort of gently rub it a little to help it absorb then spray again. I was not diagnosised with it at that time I just thought it was dryness due to menopause.  I never looked much at it after that and that was my mistake.  Keep a check on it as it did major damage to my skin before I even knew it.  If I had used the vinegar sooner it might have slowed the progression as it's hard for anything to grow in that environment.  Now I also use Emu Oil.  Hope this helps.
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  • Posted

    Is there any skin changes? If not it could be Vulvodynia which can be painful

    xx

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    • Posted

      Hi Claire I was the same no white patches, not itchy but sore, raw and stinging! I use coconut oil and take 10mg amytriptiline for nerve pain in legs, buttocks and vulva! I'm thinking more vulvodynia, hoping to have that confirmed tomorrow . Good luck trying things that works for you.
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  • Posted

    You need a biopsy to diagnose as it is useless treating something when you do not know what it is. Have your GP refer you on to a dermotologist to get a correct diagnosis. 

    All the best!

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    • Posted

      I do agree that you need to get a definite answer but do it quickly with a Dermotologist or specialist as you need to find answers. If it's a long wait, vinegar/water or warm sitz baths shouldn't hurt but at least soothe things until you can get what you need.

       

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  • Posted

    Ribi, I would try to find a Vulva Clinic in your area, or a dermatologist.  Unfortunately, many GP's aren't that well informed with regards to Lichen Schlerosus.   A professional that is used to seeing many cases of LS should be able to give you a quick diagnosis, sometimes this can be a verbal diagnosis, depending on your symptoms, and sometimes some women will need a biopsy.

    A good plan is to start reading as much as you can about this condition, as it will make you feel more in control, and less anxious and upset.

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