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Lichen Planus on the vulva.

Posted , 11 users are following.

Cheetah
Cheetah

I've just been diagnosed with this on the vulva and have been prescribed Dermovate and also Hydromol and Dermol as an emollient. I'm to see the dermatologist again in three months.   Has anyone else got it on the vulva?  I'd be grateful for any tips or advice.

0 likes, 24 replies

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  • Lambychop
    Lambychop Cheetah

    Posted

    Hi Cheetah,

    I too have lichen planus of the vulva. I was diagnosed by a GYN initially and he manages my internal vaginal issues but I also see a dermatologist who placed me on immunosuppressants and plaquinel to help manage the vulvar and vaginal symptoms.I have been unable to use tampons or have sex for 2 years with my husband due to the pain.  I also use Tacrolimus and Halobetasol creams every day on my vulva to manage the symptoms which work well. 

    • Cheetah
      Cheetah Lambychop

      Posted

      Thank you for your reply.  So sorry to hear that you're having such a hard time with this.  I initially saw the GP, who did a biopsy which came back as 'chronic inflammation'.  I then asked to see a dermatologist who did another biopsy and this showed the diagnosis, so I'm really pleased that I asked to see her.  She called the result of the first biopsy 'rubbish'!

      I very much hope that things soon improve for you.

    • ellen57898
      ellen57898 Lambychop

      Posted

      Be very careful with Plaquenil.  Get your eyes checked by an ophthalmologist yearly.  Plaquenil affects the eyes.  It builds up in the eye fluids.  I have a visual field test and complete eye exam yearly ( not by an optometrist in an eye glass store.  A medical specialist).  

      Also, LP like mucus membranes, like vagina and eye mucus membranes. Another reason to get eye exams.

      I have been dealing with VLP for years and most recently OLP.  After many meds, the only thing that has cleared me up ( vaginally) is Elidel cream.  Ask your gyn about it.   I also see a specialist that only deals with infections /problems of the vagina and vulva.  He was referred to me by my gyn.  He is in the Washington DC area.  If you live near by, I will send his name. Before he moved his practice to this area, I traveled 1.5 hours to his office. It was worth every traffic jam. I have been symptom free for a few years now. Still use Elidel once a week.  I have no pain, swelling or itching.

    • karen41728
      karen41728 ellen57898

      Posted

      Hi Ellen 

      I suffer with olp too, I was diagnosed years ago after abnormal cells with a smear test, needed colposcopy, the two are connected, how old are you? Didn't start having symptoms though till about 5 years ago it was my dentist that diagnosed it, think it just gets everywhere, I have a few little lumps on my face and I'm sure it's LP 

    • ellen57898
      ellen57898 karen41728

      Posted

      I am 70.  I have had VLP for at least 10 years.  The OLP is new.  My dentist was not convinced I had gingivitis and sent me to a periodontitis. She did biopsies and diagnosed the OLP.  She had plastic molds made that I use on my teeth ( go up to gums) with horrid medicine smeared inside.  I leave on for 30 minutes. I do see some improvement but I think it is a long process.  I was also told that the mucus membranes in the eyes is a common area. Important to see an ophthalmologist for eye checks.  I have some bumps on my arms, but they are not rash-like. Soft.  Could that be LP?
    • karen41728
      karen41728 ellen57898

      Posted

      It could be elllen, it gets anyway being a skin disease, I am 60, did you ever have treatment in the past for abnormal cells? I can't eat anything spicy or acidic, but really my dentist noticed a tiny white spot about 15 years ago and I didn't have any symptoms until it developed further 

  • gill77081
    gill77081 Cheetah

    Posted

    I was diagnosed 3 years ago with lichen planus of the vulva.  Previously I was told it was psoriasis which had thinned the skin.  The skin used to split at the bottom where I had stitches (3 children).  I was prescribed Dermovate ointment which is difficult to apply every night for 2 weeks and every other night for 2 weeks) and Aqueous cream to be used in the shower.  But the problem keeps coming back and the area gets very sore.  I asked the GP if I could go back to the clinic for advice and there is about a 3 month waiting list at least on the NHS.  I use Vaseline as a barrier.  Aqueous cream makes the skin even more sore.  I have started using KY gel but it is very messy.  Would like to find a moisturiser cream that does not sting.
  • ellen57898
    ellen57898 Cheetah

    Posted

    I had many issues through the years. I was first diagnosed with Streph B. Medication included cortisone and antibiotics which was inserted Vaginally. The cream had to be made at a compounding pharmacy miles from my house. When that kept returning, I was sent to see a doctor who ONLY deals with issues of the vulva, endometriosis and other internal ailments. He did a biopsy, came back with severe lichen planus. Started with clobetasol cream twice a day. Didn't help. After a variety of meds, I started on Elidel. Life saver. I now use the Elldel once a week, to make sure it does not return. I see the doctor now once a year for follow up.  This doctor was a miracle man.  I live in the Washington DC area, so if anyone is suffering as I did, I will be glad to share his info.

    • Gillian1956
      Gillian1956 ellen57898

      Posted

      Can you please. Tell me what Ellfel is because I've tried clob and moisturizer but no help seem To make it more sore I'm having a bad flare up right now 

    • ellen57898
      ellen57898 Gillian1956

      Posted

      ELIDEL is a steroid cream used for severe eczema.  I was on clobetasol and even a compounded med made by a specialty pharmacy  ( my dr gave the pharmacy the formula). Nothing helped me. I was even given meds to help with depression and anxiety. My life was hell.  Finally, after being referred to the gyn who only deals with issues if the vagina and vulva, he did biopsies and decided to try the Elidel ( google lichen planus and Elidel).  I urge you to ask your doctor about it.  It saved my life and sanity.  Those of us who know the horrors of VLP can understand the pain of it.  I wish you luck and hopefully a cure ( or remission).  Please stay in touch.

      Ellen

    • Gillian1956
      Gillian1956 ellen57898

      Posted

      Thank you gor that j will be asking my dermatologist about this on my next visit soon 
    • karen41728
      karen41728 ellen57898

      Posted

      Ellen did you ever have treatment in the past for abnormal cells after a cervical smear, I had colposcopy many years ago 
    • ellen57898
      ellen57898 karen41728

      Posted

      Long ago, maybe 20 years ago, I had some abnormal cervical cells. It was treated with freezing therapy. I forgot what it was called.  I also had a massive fibroid ( I called it my grapefruit).  At that time the treatment wa a complete hysterectomy).  The VLP came later.  Before the LP was diagnosed I was diagnosed with Group B strep in vagina. My gyn used antibiotics ( cream inserted into vagina) to treat.  She thought all my problems stemmed from that.  It took a couple of years until she admitted defeat and referred me to the gyn specialist that did the biopsies and found the LP.  It was such a relief to finally know what was wrong. He considered light therapy that is used in psoriasis patients. I never saw a dermatologist.  I only saw gynecologists.    Please don’t give up.   I have not had a break out in years.  I use Elidel cream once a week for maintenance. I see specialist yearly to follow up.

      Ellie

    • karen41728
      karen41728 ellen57898

      Posted

      Yes I had colposcopy about  15 years ago was then diagnosed with LP by my dentist who sent me for a biopsy, although at the time Ellen didn't have any symptoms at all, it's only when it develops years later, the same virus that causes the abnormal cells in the cervix cause these other changes in the skin and orally, hpv 

    • jj2013B
      jj2013B ellen57898

      Posted

      Elidel has just gone generic in the USA. My derm said it was expensive (unless you had good insurance) for many people when it was brand name. The generic formula cost me $8 for 30 g tube

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