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pauline07984
pauline07984

Hi I am currently waiting for the results of a biopsy for suspected oral LP.  However for the last two months, I have had increasing problems with itching and burning of my vulva. My GP gave me an antibiotic/steroid cream which after two weeks has not helped. The skin around my vagina now feels really rough and thickened and the itching is sometimes unbearable, The only thing that seems to help is Sudocrem, but the affect soon wears off. It seems to be worse when I pee. I am now wondering whether I have vulva LP, even though I have not had a definite diagnosis in my mouth yet.  Does anyone on here have similar sympoms and any suggestion to help the itch? 

1 like, 14 replies

14 Replies

  • karen41728
    karen41728 pauline07984

    Posted

    Hi Pauline I have lichen planus everywhere mouth and body it's driving me and I am 56 and have had it about 12 years but just the last year has really bothered me at the moment I have a terrible site throat also 12 years ago I had an abnormal smear test because if hpv and I am terrified of cancer, how old are you Pauline have you ever had any issues with smear test ? X
  • Holly345678
    Holly345678 pauline07984

    Posted

    Hello Pauline.  I'm no doctor, but I suggest you look into being checked for Llichen Sclerosus, if you haven't already.  I was diagnosed with Lichen Sclerosus down there years before my oral Lichen Planus was recognised. There is an excellent Lichen Sclerosus forum which has helped me a lot! If you're interested I'll give you details (not sure if this forum allows that sort of sharing though)
    • Holly345678
      Holly345678 pauline07984

      Posted

      Hi Pauline.  Am v much feeling for you.  I was v anxious when my LS was recognised, but within 18 mths it was under control, thanks mainly to this superb forum (this really is a forum with total integrity, a long track record and active membership....vvvvv supportive & practical):

      Our HOME page is http://groups.yahoo.com/group/LichenSclerosis

      hope you'll let us know how you get on...take heart: you're not alone xo

    • Holly345678
      Holly345678 pauline07984

      Posted

      Hi Pauline...I hope the moderators let you have my reply with the link to the LS forum....I posted this just now in a reply to you & got a message that due to the link, my reply was being checked out.  Like I said earlier, I had a feeling the forum might take some sort of action.  And I v much feel they are totally correct in doing so: this sort of vigilance maintains this forum's integrity.  So, we'll see if the link is permitted.  But you can find this LS forum yourself....as I did: I was on a Yahoo forum for another aspect of my health stuff (I'm a DES daughter & yahoo hosts the DES Action USA forum) where a fellow LS sufferer told me to check out the Yahoo Lichen Sclerosis Group forum.  Once I attended this forum, I realised it would be surprising to find any forum that's as helpful & informative...but I could well be wrong...cause it sounds like the Patient UK LS forum is great too

      take care...hope you'll let us know how you get on. xo

    • Holly345678
      Holly345678 Emis_Moderator

      Posted

      Thanks alan: I will check the patient.info LS forum out.

      i'm new to patient.info and have been managing my multisystem disease with the help of other dedicated online forums until now.  My primary condition is infant onset systemic lupus, under treatment by the NHS.  And as is typical for patients like me, I have several diagnosed secondary conditions in treatment ongoing.  

      I'm to have found this patient.info, Lichen a Planus forum, which was recommended to me by a fellow member of my Lupus UK HEALTHUNLOCKED online forum

      with best wishes

      holly

    • Holly345678
      Holly345678

      Posted

      Oops, sorry: typo alert:

      the word 'glad' got missed out

      i thought I'd typed:

      i'm glad to have found this patient.info Lichen Planus forum....

       

    • pauline07984
      pauline07984 Holly345678

      Posted

      Hi Holly, I got the link. Will check it out when I have more time. Will let you know how I get on. Thanks again x
  • Guppy007
    Guppy007 pauline07984

    Posted

    Hi I have oral lichen planus and body lichen planus and lichen schlerosus..I suggest you go to the lichen schlerosus forum on this site, you may have that or you could have lichen planus of the vulva..the more you read about this condition the better you will feel.  
  • Jeepers
    Jeepers pauline07984

    Posted

    I advise you to go back to your GP and tell her/him how bad it is and get some stronger steroid prerscribed. You might  have LP or LS , or both, in the vulva area. You need to get something strong enough to take away the itch and prevent you from scratching as that just makes it worse, so don't delay. Good luck.
  • pauline07984
    pauline07984

    Posted

    Thanks for all the advice.  I'm 50 and the sympoms first started in my mouth in the summer.  The itching down below I have had for about 8 weeks. Sometimes its worse than others, but never really goes away. I had a mild dyskaryosis smear about 8 years ago, but this resolved on its own and been clear since. I have an appointment with the nurse next week for swabs, although i'm not convinced its an infection. I have read about LP and LS and both seem pretty awful, I'm really hoping its not this. I will check out the lichen sclersosis forum as well. thanks for info everyone x
    • karen41728
      karen41728 pauline07984

      Posted

      Hi Pauline I have regular checks at the dentist for thus lichen planus, every time it go I'm terrified, I cannot eat spicy foods my mouth burns for age, do you have this lichen on your body as well? I started to get it recently the itch is terrible I use aloe Vera Normandy people can understand this disease.?
    • pauline07984
      pauline07984 karen41728

      Posted

      HI karen, I don't seem to have it anywhere else on my skin, I still don't know if it is definitely LP in my mouth as waiting for biopsy result, but oral surgeon suspected it was. Its only mild and doesn't give me too much discomfort. Although hot drinks can make it sensitive. I have it on the inside of both cheeks. I understand it needs to be regularly checked, because there is a higher risk of cancer! not what I wanted to hear. I'm hoping that it comes back negative for LP or LS. It doesn't sound a whole lot of fun sad
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