Lop and vlp

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Hello over the last few months I have been diagnosed with oral lichen planus and now recently with vulval lichen planus.

i am being treated with  clobetasol steroid,and epaderm moisturiser

and am feeling really fed up as I have been told there is no cure for it.

Does this mean that this particular treatment regime is for life???( I know they say it can be ' controlled'wink, and has anyone had this and it has got slowly worse or has anyone ever managed to cure themselves???

also has anyone with this heard a link with the flu jab?and if so does this mean you should or should not have the jab???

sorry to sound confused - but I am finding this diagnosis a bit much to bear at the moment

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9 Replies

  • Posted

    Hello Lorraine I'm so sorry to hear that you also have been diagnosed with this horrible condition. I was diagnosed with oral lichen planus about 4 months ago and I also have being diagnosed with lichen sclerosus of the feminine parts. I am also on clobetasol. I had to use it every day for the first two weeks and I'm now on a three times a week maintenance. There is no cure for this disease. One thing that has really really helped me for my mouth ulcers is a process called coconut pulling. What you do is dissolve a teaspoon of coconut oil in your mouth every morning before you eat or drink anything and swish it around in your mouth for 10 to 15 minutes. Then you spit it out and brush your teeth as usual. The coconut oil virtually takes all of the toxins out of your mouth and actually really does help. I have also been told that I have this for life and stress is a huge huge factor. I have also found that chocolate is a No-No and I love chocolate. Hope you're not in too much pain with it and that you are able to find something to help you. As far as the mouth ulcers go my doctor also prescribed a mouthwash containing prednisone and Lidocaine for the pain. I try to use this in the morning after brushing my teeth and then again before I go to bed. This also seems to keep a lot of the mouth ulcers at bay. With both of these conditions you have to be very Vigilant that you have your mouth and your private parts examined by a medical practitioner at least once every 6 months. With lichen planus of the genitals or lichen sclerosus of the genitals 40% of people who have this will eventually get skin cancer. So the sooner you can get on a maintenance plan and take care of it the better. I have done so much investigation on this and spoken to so many of the health professionals that I feel like I'm in overload with information.

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    • Posted

      Thanks for your reply-sorry to hear you also have lichen sclerosis.

      you have given me some useful information, the coconut oil sounds interesting,I might try it smile

      i didn't realise 40% people will get cancer with the vulval lichen planus and sclerosis - that seems such a lot,and quite an eye-opener!!!

      thanks again for the reply

      Good luck with your treatment smile

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    • Posted

      Hi Lorraine. Sorry I should have worded that little differently. There are people who have lichen sclerosus who never bothered to see their gynecologist or a medical practitioner. They just deal with it because they don't know what it is. It is those people that can eventually get cancer in the area. Once again sorry if I worded things the wrong way. Good luck with your treatments. If you Google coconut oil pulling it will give you a ton of information on it and the benefits of coconut oil.

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  • Posted

    Dear Lorraine:

    I’m so sorry for your recent LP diagnosis. Mine started last March with what I thought was a urinary tract infection. I felt constant burning on the vulva and opening to the vagina. Urinalysis turned up negative for infection. My MD found an ulcer on the interior of my vagina and treated for that which went away in 10 days but still the burning after urination and wiping the area continued. I was in agony sitting and couldn’t wear my jeans! Using a mirror I looked and saw nothing but what I called a purplish color in the vulvar area. My MD suggested I go to my GYN which I did. She immediately diagnosed me with lichen sclerosus and took a biopsy of the vulva to make sure. She also put me on the steroid clobetasol. At first it seemed to help but after repeated use I felt constant pain from chafing from my clothing. I read where steroid creams can cause thinning of the skin. I went back to my GYN and she said your biopsy came back as lichen planus. That’s not my area of expertise she said. You’ll need to go to a dermatologist. At that point I gave up. I started washing  daily with Summer’s Eve for sensitive skin and used a spray bottle of warm water every time I urinated instead of wiping with toilet tissue and then blotted dry with toilet tissue. I apply Vaseline as a protective barrier each morning after washing and blotting dry.  I have been doing this routine since August and it has helped. I don’t feel chafed and have no pain. I feel a little discomfort from tighter slacks and jeans and learn to sit a little differently. I too am very upset that this will be forever with no cure. My GYN at my last appointment in July asked whether I had any sores in my mouth saying that LP can also go to the mouth. Oh wow I thought. Nice of you to finally tell me this part of the disease and then nonchalantly dismisses me to a dermatologist. I’ve gotten more help and sympathy from the nice people on this discussion group. So far thank God I have no signs of LP orally. I hope this helps you. I will add you to my prayers. 

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    • Posted

      Thanks for your reply,In a way it could have been me writing your post- I have had problems for over two years now with soreness in The the vulval area,and numerous visits to the go telling me I had atrophy, dermatitis,allergy, thrush, and one doctor even told me she thought I had genital herpes!!!(which I know I didn't),I was really at the end of my tether and in the end after having no success in having smears I asked to be referred to a vulval clinic,when I was diagnosed straight away with lichen planus, and I think I was only referred then because my dentist diagnosed me with LP orally a couple of months before,I just wish I had been referred a lot sooner to see a vulval specialist,why don't some doctors listen to you !!!

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    • Posted

      Thanks so much for your reply. Never knew there were vulval specialists. Will have to research if there are any in my area. Sad none of my doctors suggested this! As I said this is a great discussion group. Blessings everyone 😇

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  • Posted

    Lorraine, I know exactly what you are going through. I had, what my gyn thought was a Streph B infection. She prescribed a medication that needed to be made at a compounding pharmacy miles away. I followed through and felt relief for a few months. Went back to her and she tried other combinations of steroids and antibiotics.  This went on for a couple of years. The itching was horrid. The pain unrelenting. She tried clobetasol and again it worked for a while. Finally she referred me to a specialist who only deals with isssues of the vulva. I drove an hour and a half to see him. In my first visit he listened and we talked and before examining me he told me he would find out what was wrong and how to fix it.  He did, what seemed like a thousand biopsies.  The results came back as severe Lichen Planus. After learning what I had used , he immediately told me about the success he had with Elidel cream.  I started with 2X  day. Then to once a day. I saw him monthly for a year.  I now use it once a week and see him once a year.  Although it cannot be cured, the Elidel has been a miracle.  My last visit showed I was virtually clear. Talk with your gyn about Elidel.  

    If you live in the Washington DC area, I will give you his name.  He has patients that come over a hundred miles to see him.  He is very personable, never overbooks and gives each patient as much time as you need.

    Now, I just was diagnosed with oral LP. My Periodontist is having trays  made that I will put medicationon and wear for 30 minutes 2X a day.

    Ugh, sometimes I wonder when this will all get resolved.

    Stay strong, Lorraine.

    Keep in touch through the forum.

    Ellie

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    • Posted

      Thank you Ellie for your reply,it was very informative( and through this forum nice to know you are not the only one !! smile,

      i will enquire about Elidal-is it a cream? Or ointment, 

      the only thing is is that I live in England so will enquire at my next appointment,

      thanks again for replying smile

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    • Posted

      Elidel is a cream. There is a lot of info about Genital LP on Google.  I hope you can speak to your doctor and have a chance to try it.
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