Vaginal lichen planus

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hi, can anyone tell me what treatment they are having for this please? I’ve had OLP for 3 years now and started with VLP last summer. Waiting for dermatology appointment but the discomfort even when using the cream isn’t pleasant. Any thoughts, advice or ideas very welcome please. 

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  • Posted

    I am using the steroid ointment - Clobetasol and it has worked for me going on 4 years now. No current flair ups.

    Good luck.

    Linda

     

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  • Posted

    My gynecological dermatologist put me onto clobestasol ointment , which wasn't easy to apply, so then onto the cream version. She also had me use colifoam , which is not designed to use on VLP, but worked PERFECTLY. I got a smear afterwards that didnt hurt! It does tend to make me get rosacea on my face as a side affect but hell, the VLP is so much better. I have gone off methotrexate and I still appear to be quite a lot better, though that may be a temporary lull in symptoms

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  • Posted

    I'm so fed up with feeling sick all the time, VLP I can't seem to get healed, using clobetasol ointment but isn't doing the job of healing. Has anyone exp burning during urination when your flared?

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    • Posted

      Maybe you need something more systemic, like methotrexate, or steroids. nasty but better . the colifoam seemed to help with the inflammation near my urethra
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    • Posted

      hi, sorry you’re in such discomfort. No I don’t have any pain during urination. Other cream suggestions here might help? Take care 
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    • Posted

      I have horrible burning during urination currently and don’t know what to do about it. The clobetasol ointment is burning so bad and not helping anymore either. I’m in so much pain and so frustrated! 
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    • Posted

      There is also clobetasol cream. That might be soothing.  I have tried different treatments and found success with Elidel cream. For the burning, keep a spray bottle with warm warm nearby. When you urinate, spray to wash off and then pat dry.  Also, ask your doctor to prescribe lidocaine ointment. It will numb the area.  But ask about Elidel.  

      Don’t give up. We are all here to listen to you vent and send cyber hugs across the ocean.

      Ellie

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    • Posted

      Hi Tab61,

      I read your post here and on another LP discussion. I’ve had LP since 2008 and I know it’s hell.  You name it I’ve had it in those areas. The one that emotionally broke me was my scalp when I started losing by hair in chunks at a time and I felt embarrassed to go to work or even out of my apartment. What seemed to help everything except my scalp is a cleanse. This is not a juice cleanse. There is a book called the liver and gallbladder miracle cleanse if you have time give a read and try it until your cleared up. Just make sure to follow it to the T and also make sure you do the colonics as well. My doctor also gave me chinese herbs but they didn’t seem to do much for me. For the hair I’m just confused. Also I started spraying 1 part organic apple Cider Vinegar all over my body and scalp that’s the only thing that kind of works on my scalp for the itching. But he LP just doesn’t go away that easyily. If you google there’s article to leave he ACV for 30 mins... but I tried for a couple mins at a time and increasing it a couple mins per weak.  It’s helped me.. just wanted to share with you. 

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  • Posted

    Hi,

    I also have this and am washing with diprobase cream and using Clobetasol ointment twice a week,which seems to control it at the moment,but I think I have had this for a couple of years really but only diagnosed about six months ago.just wish there was a quick fix as I'm not sure but think that it's a long term problem once you have it.Would be nice to know if anyone has ever had a complete remission......

    good luck anyway and let us know what the derm prescribes for you....

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    • Posted

      Thank you Lorraine, I will ......re if it ever goes away....I was speaking to a friend last night who said she had had it a few years ago and it had cleared up, but has just come back.  stress has a lot to answer for! Thank you again. Gail 
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    • Posted

      Never have had complete remission and I've had it for 10 years. (sorry). Just keep visiting your OB/GYN as there are other female complications associated with this disease...like vaginal shrinkage. Not the greatest when your married. Just sayin'

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    • Posted

      I am in remission.  Took lots of trial and error and tears.  Google Elidel Cream.  Of course, now I am dealing with oral LP!

      Be well

      Ellie

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  • Posted

    After a few years of various treatments by my gyn, I was referred to a specialist who only deals with issues of the vulva/vagina. He took one look and then did biopsies. ( which is not a pleasant experience).  He started me in clobetasol. That worked for a few months but never completely cleared things up.  He then put me on Elidel. It has been a miracle for me. Started at twice a day, then once a day. Now I am on once a week for maintenance.  He also suggested using lights (like is used for psoriasis). I did not need that.  If you are in the Washington DC  area I can send you his name. I have felt wonderful. No pain, itching, swelling or discomfort of any kind. Google Elidel.  Now I am going through oral LP  ( which is another horrid situation)

    Please see someone who specializes in this condition.  There is help. I wish you well and please stay in touch.

    Ellie

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    • Posted

      Hi Ellie, thank you so much for this information. I’m in the UK so I will speak to my GP about the things you have said. She is really good and listens. I’m so pleased you are ok but sorry you have OLP.  I have found leaving out citrus fruit, sugar and spices has helped and use a prednesolone tablet for mouthwash only when it’s bad.  I also have it on my tongue and use 0.1% hydrocortisone cream on it for up to a week at the most and that helps . It is frustrating as sometimes just a glass of water sets it off. I also take paracetamol when it’s bad but not regularly. I hope this helps with your OLP. .... and yes I will keep in touch. Take good care and thank you again, Gail x
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    • Posted

      I just wrote a post , left for a few minutes to feed my pup, came back and it was gone. So, here I go again.  I am seeing a periodontist who after doing biopsies of my gums and tongue areas, made molds that fit over my teeth and go up to the entire gum area.  I  put this disgusting steroid ointment on them and wait for thirty minutes. I do this twice a day.  When I see her in February I will go to once a day. I am also using this super soft toothbrush and Tom’s toothpaste. ( also her recommendation). No more electric toothbrush. That is really hard on the gums. Make sure you see an ophthalmologist. LP likes areas with  lots of mucus and eyes are another common area.   I am going to ask her about the mouthwash.  I have found a lot of support on this forum.   Be well

      Ellie

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    • Posted

      Hi Ellie, thank you. All useful information and helps us to cope when we share. Take care, Gail
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    • Posted

      Hi Ellen,

      I have a tube of Elidell, it was given to me for itchy open lesions on my shins, it didnt do anything so i was told to stop. Are you saying that you were told it could be used on the vaginal area 2 times a day? Ive been using clobetasole but it isnt helping, I see a LP specialist in Chicago the end of February, thinking I may try the Ellidell, once you confirm that I read your post correctly, every time I use clobetasol it makes me bleed.

      I gave never heard if using hydrocortisone in the mouth, I use Protopic after brushing at night for maintenance or if flared I rub on sores with a q tip. I cant remember when the last time was that i didnt have some sort of sore. Thanks everyone, please post back Ellen. TERESA

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    • Posted

      I started originally with clobetasol. It did nothing, except aggrevate  the situation.  I started with Elidel, 2X day.  After about 2 months went to 1X day.  From there to 3X week. Now I am on 1X week ( basically maintenance.) The Elidel cleared the LP up entirely.  I see a specialist who only deals with issues of vulva/vagina.  I see him once a year now, he examines and biopsies the areas.  I cannot tell you how relieved I started to feel. The itching, burning and ulcerative areas cleared up.  I have had no side effects and feel great.  If you have a tube of Elidel, give it a try.  Try to get it as far up as possible (sorry to sound so crude). When you see your doctor in February, hopefully you will be on your way to recovery.  Something that was also recommended was the lights used for psoriasis.   Besides the clobetasol, my doctor injected steroids directly into some of the lesions. That worked for a while but nothing as well as Elidel.

      let me know how it works for you.  I started feeling better within a week.

      take care

      Ellie

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    • Posted

      Thank you Ellen, did I ask you if you burn when urinating? I believe the urine is hitting the erosive areas? They take a uti test every time and it's neg. I actually scream a couple octives higher when going and I hold it cause it just hurts so bad, I even have a spray bottle if water I spray as I per, helps a tad, but no one of us should ever have to tolerate the pain and discomfort of this auto immune crud!

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    • Posted

      The burning was horrid. I was given lidocaine cream to help soothe the area. I too, held  a spray bottle nearby. I was told to drink more to dilute the acidity of my urine. Of course that makes you go more frequently...once the vulva started healing, I felt better. I struggled with this LP for years until I saw the specialist.  My regular gyn treated me for ( what she thought was) streph B, yeast and a zillion other infections.   Stay strong... 

      Ellie

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    • Posted

      sorry for coming in late on this discussion. Re the torture of burning/flaring/sore parts being peed over, in addition to squirting or pouring water over the area at the same time to dilute the effect, also apply layer of vaseline over the sore part before urinating.  Also try leaning well forward as you sit to re-direct the flow, as that may or may not help.
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    • Posted

      Hi ellen, glad to hear you have had releif from the vaginal Lp. Can i ask are you able to have sex again? 

      Currently struggling with this issue for months and months!😫  Sorry to hear about the oral lp 

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    • Posted

      Yes, but use a lubricant. My doctor prescribed an estrogen cream. Once you get  remission, you will have dryness. The cream relieves the dryness.  I really can’t emphasize the Elidel that I use . Clobetasol did nothing for me. I do not have the horrid itching, pain from ulcerative areas.  Are you in he U.S.?
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