Does VLP always affect the mouth?

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I’ve had VLP for 9 months. I used prescribed clobetasol for a few months but found it harsh causing my skin to thin. I find relief using Vaseline to act as a shield from chafing from my clothing.   Since joining this forum’s discussions I find that many of you report that you have oral LP also. Does this always happen? I’m very worried about this as I thankfully don’t have OLP. Any comments would be most welcome. 

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  • Posted

    Hi Gigi313, I’ve had Olp for bout 3 years now and have just been diagnosed with vlp, awaiting confirmation from dermatology department. Not sure if you get one the other follows. I use dermovate for my vlp for approx a week and that seems to reduce any inflammation. I have also reduced wearing trousers to perhaps once a fortnight and hardly ever wear tights now and that has also really helped . Hope this is useful and you take good care, Gailx
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    • Posted

      Hi Gail D

      Thank you so much for your reply. I understand your advice about tights and trousers. I do the same thing. I looked up dermovate and calmoseptine ointment comes up. I’m in the USA so that’s probably the difference. I hope and pray I don’t get OLP too. Doctors I’ve seen are not very helpful. Wish you well in the care of this affliction. Take care, Gail. 

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  • Posted

    I was diagnosed with VLP about nine years ago. I had other issues that my gyn never thought about VLP.  I was referred to a doctor that only deals with issues of the vulva and areas around there. He did a biopsy and then tried a number of medications. Clobetasol is usually the first med used. I too, found it harsh.  He switched me to Elidel.  It has been a miracle for me. I started out 2X day and now it is once a week.  I see him yearly and he is always pleased with my condition.  You said you were in the US.  This doctor is in the Washington DC area. If you are near that area, I will send you his name. He is definitely worth the time.   Recently I started to have gum issues.  I was sent to a periodontist who did a biopsy.  OLP.  She had trays made from impressions of my mouth. I us a prescription dental cream on the trays 2X day. I will be going to 1X Day next week.  LP is an autoimmune condition and I think that once in your system, it pops up elsewhere.  I was told that the mucus membranes around the eye is another spot.  Wash hands often. Contact an eye specialist for an exam (make sure it is a doctor not optometrist).   I hope you feel better.  Also, besides the tights, wear only 100%cotton panties. 

    Ellie

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    • Posted

      Hi Ellie. Thank you so much for your informative reply. Unfortunately I’m not near Washington, DC. I’m in the Tampa Bay,  Florida area. So sorry your gum problem was diagnosed OLP. Hope you find the proper treatment and relief. Frightening to hear the mucus membranes of the eyes can be affected with LP. This is such a dreadful affliction. It’s such a rare disease and I pray that God bless us all who have LP in any of its forms.  Take care of yourself and good luck. 
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