1. Community
  2. Skin and nails
  3. Lichen Planus

Oral Lichen Planus

Posted , 18 users are following.

ckitefly
ckitefly

I think I have Oral Lichen Planus but I can't get a doctor to confirm it.  I have had mouth sores in my check area since 2009 and now my gums are very red and inflammed and have been told that I have white lines on my inside cheek area.  When I go to a dentis to have my teeth cleaned, I am always turned away because they don't like the looks of my mouth sores.  In 2013 I had doctor swab my mouth and send for testing and also did blood work but was told nothing showed up. I think she was looking for bacterial effection.  In the mean time, I continue with a very sore mouth.

I have a hard time eating anything because the sores are next to my bottom back teeth so eating irritates the sores a lot at night I sometimes bite the area with sores due to swelling so they pretty much never heal. 

I recently went to a new dentist and she too wouldn't work on my teeth but she gave me details as to her concerns and told me to get checked for an Auto Immune disorder.  I have since been to a doctor and had blood taken to check for that and then they sent me to  ENT.  He mentioned Oral Lichen Planus which was the first time I have heard of it.  He wants to do a biopsy and then he mentioned a steriod rinse. 

I also researched OLP and I have all the symptoms listed so I just don't understand how going to doctors since 2010 about the mouth sores, no one can figure it out?  Am I finally heading in the right directions for diagnosis?  I scares me that it has been left un treated for 5 years when I read that sometimes those with OPL can lead to mouth cancer.  Any suggestions would be greatly appreciated.

0 likes, 53 replies

53 Replies

Prev Next
  • lee34449
    lee34449 ckitefly

    Posted

    Yes, I do/did get numness on my tongue, mainly the tip. They never mentioned gums, but the mouthwash was an annesthetic although I didn't like taking it. Hot things like chips [what we heathens call French Fries!!] hot drinks, alcohol moutwashes, citrus fruit, it was terrible having to watch everything I ate & drank. 

     

    • ckitefly
      ckitefly lee34449

      Posted

      Okay thanks that helps me push the issue more with the doctors here.  No.... not Alcohol too!   They say it will never go away but just mangeable. Is that the case for you?
    • lee34449
      lee34449 ckitefly

      Posted

      Basically, yes. It is nowhere near as bad as it used to be. Some may get over it completely, I am fine with hot stuff now, just occasionally I get a reaction to spicy stuff, which won't bother you anyway. I don't drink much these days, but I don't get any problems when I do. 

       

    • ckitefly
      ckitefly lee34449

      Posted

      Good to hear.  Thanks so much for your feedback. 
  • kathryn07219
    kathryn07219 ckitefly

    Posted

    Has anybody tried Emuaid - advertised on this website - and, if so, any success?
  • Sasr24
    Sasr24 ckitefly

    Posted

    It seems like you went through exactly what I did.  I woke up one day with my gums red and sores in my mouth with lacy cheeks.  My GP told me I had gingivitis, which I doubted because I take really good care of my teeth.  However after two refills of the meds for gingivitis with no change, I went to the dentist, who had no clue but said it wasn't cancer and wasn't gingivitis.  Then I went to an oral surgeon, who said it was stress and would eventually go away.  Wrong.  i went to a peridontist and a dermatologist, who both wanted to do a biopsy.  I chose to stay with a dermatologist.  He confirmed OLP with a biopsy. He put me on an immune supressant drug, which helped tremendously,but gave me headaches.  I then started another immune suppressant (mycophenolate), which helps keep it in check so the symptoms aren't so bad. I have had other autoimmune related illnesses but this one is the most persistent.  After two years I still have it. 

    I don't use rinces because they were more annoying than helpful.  I use children's fruity toothpaste, but plan to get by the organic store soon to get adult toothpaste without mint.  Mint toothpaste just burns. I never ate spicy food so I don't miss that.  Many here have had success with removing certain foods from their diet, which I plan to do it mine doesn't go away soon.  (I had a friend who had it and hers just went away after two years!)  So there's hope for all fo us!

    I would suggest you get the biopsy (it's a very simple process) and get the confirmation, but from what you've described, it definitely sounds like OLP.  Choose the doctor who seems more likely to care about your illness.  Let him/her know how much you've been through and that you need someone who will help find a diagnosis.  Ask up front if they are comfortable treating OLP.  There is no cure so you have to manage the symptoms the best way that works for you.  Most OLP does not turn to cancer, but a doctor needs to keep watch for that to be on the safe side.  Good luck.  Feel free to ask me anything you want.  Everyone here is so helpful, too!

    • ckitefly
      ckitefly Sasr24

      Posted

      Hi thanks for your response.  I stared a mouth rinse today. Dexamethasone which I understand is a steroid. Need to rinse for 5 mins three times a day. Yikes! Can I ask you this? Did you have really bad chapped lips too? I've had cronic chapped lips for the same amount of time as mouth shares. 5 years. I know lips are in the symptoms but I thought inside so just checking.  The tip of my tongue is numb tingling too. Did you have any of that? It's an amazing feeling of relief to finally get somewhere with this with hitting a brick wall for 5 years. Thank you and to all the kind people who have responded to me today. 
    • Sasr24
      Sasr24 ckitefly

      Posted

      I haven't noticed my tongue tingling or chapped lips.  Symptoms are so different for each of us.  I am sorry you are having to deal with even more.  There are many who have purplish skin lesions all over their body.  I had a few on my legs but they are gone with this medication I'm on. Try some coconut oil on your lips. It may help.  You will see many suggestions on this site.  Some work for some people and not others.  Unfortunately with this illness, it's hit and miss.  Don't give up and remember you have lots of friends here.
  • peggy96608
    peggy96608 ckitefly

    Posted

    Hi There. Try not to worry about cancer too much...it is a tiny percentage that can get it. Looking on this site will show you dozen and dozen of people who have had this for many years...you're not alone.

    None one understands why doctors and most dentist do not want to deal with this...maybe has to do with insurance companies, chronic conditions and fear of spending too much money per patient? In the mean time of their late enlightenment, get your body alkaline, look up green super foods to help with that, get books about it, stop eating sugar, dairy, and gluten.

    In reading other posts it looks like there is a relationship between Candida and OLP. Do get your body in position to fight this into remission or dare I say, cured.

    Also try Champo-Phenique on the mouth sores (over the counter). And after the open sores are gone...I've had great luck rinsing my mouth with vinegar/water to eliminate the intense nerve pain in my gums. Since I've been on this strict diet for 2 weeks the gum pain wasn't there today!

  • yvonne19574
    yvonne19574 ckitefly

    Posted

    HI chiefly,

    Your not alone.iVe had mouth throat and stomach problems for several years now with difficulty in swallowing ,swollen red gums,ulcers and blisters and white streaks in my mouth.i ve also another condition where I  had to take a wide range of drugs and pain killers with side effects .Due to trouble with my mouth and swallowing several dentists have recommended various

    antibiotics, mouth washes and meds but the condition keeps flaring up.At last having trouble with my female organs for several years a new doctor has referred me to a consultant who has now diagnosed LP.Im now awaiting further tests for oral LP as well .Basically I've had the symptoms and signs for at least 7years.So like you I'm new to this site and now relieved to have a proper diagnosis and hopefully the meds and practises to try to control and relieve it.Ive had some very good doctors in the past that didn't identify it and therefore I've been taking meds not suitable long term .Perhaps LP is not a condition many GPs know much about.I taught for 15 years in colleges of Art fIlm and Design and specialised learning difficulties but I'm the first to admit I know a lot about a little area of the arts.Even though I spent over 7years in training at degree and post grad I do not know what's happening now, what's new in research and what has been developed.Gps

    must have the same limitations unless they are continually retraining and developing their knowledge and research.With time limits of work I doubt the majority are able to keep in the know about things.Good luck and keep in touch on your progress.

     

    • karen41728
      karen41728 yvonne19574

      Posted

      Hi Yvonne I have lichen planus in all the same areas as you it drives me crazy I use coconut oil and aloe Vera I am 57 I noticed I got this after an abnormal smear test for which I had treatment so I connect it to that how old are you and have you had problems with smears xx
    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen,

      Im 60 in body going on 28 in my mind! THis maturing business is not as rosy

      as it sounds at times.Its interesting you asking that about smear tests.Going back when I was 28 I had a smear test which showed abnormal precancerous cells.I was scarred stiff of the bigC but was prescribed meds for six months and pessaries .Thank heavens the cells did not turn cancerous.My gyno history relates to a Myrena coil in my 50's due to hemoraging which worked.It was removed afew months ago!

      the consultant believes I have OLp aswell .Are your estrogen levels low?

      iVe had four children one with forceps and apparently have been stitched up like a badly made patchwork quilt.No wonder I've experienced pain and numbness in the past.i can't recall how many medics doctors nurses and consultants I have been treated by over the years since I was 18.So much has changed thank heavens since then in women's health practises.

      But it's amazing what taboos still exist about discussing female problems.

      Self  medicating off the drug store shelves and bio yogurt  doesn't solve LP

      Im sure there will be many women out there misled on diagnosis and wasting their money time and suffering because so little is known about LP.

      The risk of developing cancer is minimal but women need to know about it

      and be kept being monitored regularly by their docs and themselves.

      Good luck I hope others reply and you find relief.Keep in touch.Yvonne

       

    • karen41728
      karen41728 yvonne19574

      Posted

      Hi Yvonne thanks for your reply, good to hear from you. I went on the menopause at the same time as my abnormal cells were found which was when I was about 44, and I think this then adds to lichen planus because the cells don't renew themselves it's am autoimmune disease. I'm terrified of cancer and all this scratching is just driving me crazy, sometimes even a glass of wine sets of the heat in me. My doctor won't give me antibiotics for anything because they really won't work. I'm really fed up with this but we are not alone and at least we can talk to each other because the doctors don't seem to want to know.

      What age did you go through menopause Yvonne? What were the mess for your precancer did you not have laser.

      Take care Xx

    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen,

      Boy do we have weird bodies or what! I initial was diagnosed after going into what the doctors said was early menopause at 27! After three years with no periods, then at 31 I found myself haemoraging the docs believed I had been oregnant without knowing it.No more periods and then thinking I had flu I discovered I was pregnant but just before that I had a smear that stated

      precancerous cells, so the drugs I was given were minimal because of the baby.I had to wait till after Laura was born before some more meds and the results were good.The precancerous cells had stopped changing.tHank Heavens. Eventually after having another. Baby at 32 I went into menopausal symptoms in my late 40's .hAemoraging again severely only

       7 years ago hence myrena coil fitted .Ive had that just removed because I'm considered post menopause .Im 61 in September, my mind is still in a 28 framework my body has decided to go on strike things are collapsing , sliding,itching burning hurting and stinging .Theres an old saying I try not to swear but sometimes I don't know if I should sit on my a or my elbow!

      So I'm with you when you say it's driving you nuts, and it's embarrassing

      together with waterworks being turned on and off without my permission

      and my colon going on holiday very few days life is full of surprises.

      Does Helen Miram and Judy Dench have any of this do you think?

      Perhaps we should make a collective diary of sufferers .Whenever I get really stressed I laugh and make light of it even at my dads funeral who I love dearly, so I do now when I can .I have a consultant called Dr Veneer at Truro and another lady consultant at Penzance together with a good female doctor and male doctor who have had the wisdom to send me for tests.

      The old wives tales of yogurt and drinking vinegar, ugh, don't work .Ive never been able to take acidic food for years now and have to have very gentle yogurt no additives no colouring, no false bits etc.Ive now been given Dermol to wash in and a paraffin based ointment to ease the discomfort.Onlt thing is not to be near a flame or spark as I,ll be like barbecued chicken wings!More PR and advertising has to be done about this maybe we ought to hold a LP and OLP Day and a collective appeal to sufferers to come out of the closet! For a day, do you think Dr Sue on Jeremy vine would discuss it?

      Men do not know they are born although we have the glorious gift of the ability if we're fortunate to have children and that for me helps me get over the bad days.I sincerely hope the researchers don't find this condition a genetic hereditary thing.I would dread to think of my girls going through this or any one else for that matter.Im just grateful I don't have to flash my stuff in front of male consultants not yet anyway!They are usually young enough to be my son or son in law,,,, you take care and hang on .My best wishes to everyone in this site.I hope I haven't scared anyone. Cancer frightens me in one respect only that it may make my time with my family shorter than iD hoped but even then there's new research and drug discoveries being made so try not to jump too far ahead .Sometimes when we here there's a possibility of cancer like I did in my twenties you have jumped to the funeral tea preps before even getting it confirmed .Various illnesses in my life and the lives of my two ex husbands both died sadly when they were 52  both after we had divorced and remained on good terms one through brain illness one through a freak car accident , a lorry driver fell asleep at the wheel and my ex husbands car was the first to be hit.No one knows the future .I try to make the best of good days and rest, pray and privately rage to myself on bad days.We need to learn to live for the present more and it's very hard to do being a woman were programmed to think ahead for everybody else and ourselves.I enjoy daft things, good filmes, music flowers bird song and family and friends they don't know of course .They all have enough of their own troubles but we can moan on this site and rant and support each other.

      Ive started painting ! Da Vinci I think not even Lowrys stick men are pushing my capabilities at the moment but I do love it even when I forget how to mix basic colours etc.Keep in touch I do hope you find a better doctor who will give you more support.Most are less educated about it than we are!x yvonne

    • karen41728
      karen41728 yvonne19574

      Posted

      Hi Yvonne

      I know just how you feel, I am now on my own, well with my 18 year old daughter who hopefully starts uni in September I will really miss her, I have two older daughters and three grandchildren they all keep my mind occupied thank god don't know what I would do otherwise.

      I am just going through a divorce with my second husband don't know what it is about me I always pick the wrong ones, anyway this one has cheated on me for the second time with a women from work once again he moved in with her after living a double life for two years so you can imagine.

      I don't really discuss the olp or lp with my daughters I don't think it's fair so like you I'm suffering with one thing and another itching burning tiredness sweating don't seem to have a day when I'm just fine.

      I also work full time as a hairdresser I work in nursing homes which are so warm to start with then the minuite I start work I'm sweating and itching, I hate not being able to eat and drink what I want that was my only pleasure but like you say Yvonne it's good to talk on here and know we are not alone xx

      take care speak soon I am in the UK not sure where you are

    • yvonne19574
      yvonne19574 karen41728

      Posted

      Hi Karen,I've just spent twenty minutes trying to write to you and somehow I've lost it in the ether on the web? ANyway I'll try again.iM so sorry your having such a rough time right now but I assure you things will get better re

      divorcing your hubby after his breaking your trust .Ive been divorced twice for very different reasons but it takes along time to release the anger frustration and grief until you are able to get to grips with a new life.oN top of your condition and your daughter leaving home I can try to understand how you must be feeling right now.But you deserve better and once we all get a better grip of improving our managing of LP and keep supporting one another gradually things will improve.I come from Yorkshire originally I miss the dales and the Peak district but my home village has changed beyond all recognition from a small village into a suburban sprawl linked with two other villages the M1 and M18, its lost its character and sense of community.Its got a Holiday Inn a Macdonalds and Morrisons together with a post keep fit studio and gym .Ive travelled south and lived in Wales  finally now in Cornwall.My daughters are scattered over the UK and New Zealand but one is half an hour away but working life and running a family means we see each other about every four weeks.

      I understand about your worry of your daughter leaving I pined for my girls

      and when they had all left I sold the little old terrace I had changed jobs and area to start a new life.Not quite turned out as I thought but I have a faith and that has helped me through it all even when I've several conditions wrong with me .You will begin to make new friends perhaps do what I did .I joined a sports group Tai Qwondo nearly killed myself in the process but enjoyed the boxing practise which I let all my pent up anger and frustration on the bunch bag.I have never punched anyone in my life but that really helped , I started new courses even took up dancing as a relaxing informal exercise .You will feel much better in yourself when you off load the baggage 

      your dragging around with you at the moment even though you have LP you

      will get you sanity back.I use door handles and walls like a cat does to scratch it's back , have quite a few showers but now use Dermol on my skin

      for washing and showering, no perfumed or coloured shower gels or washes. I've been advised not to use fabric softener and be careful of bio

      harsh cleaning powders etc.eVen the loo paper and any liners have to be plastic free and chloride ,bleaching agent free.There is a line of care products called Natracare that are helpful.Theres a website on line .

      yOu have a talent with hair mines always been very thin flat and straight

      Going to the hairdressers is usually non productive so the Janice Joplin look has been my look since the 60,s apart from once having the Purdy cut.

      Nobody liked that and the photos show why .

      I do hope you find some relief from your itching, I now keep away from materials that are mixed fibres, nylons chemically produced.Ive gone back to basic cotton undies , t shirts and blouses.I find wool itches me like crazy so does wearing tights or certain types of trousers and jeans.

      Eating is a bit of a downer at times , I can't swallow lettuce ! Anything spicy,

      even chips hurt! Crusts are out and baguettes are torture .Everythings got to be Luke warm and weak milky tea no coffee , etc.

      Fish makes me smell for some reason?I don't drink because I have HM migraines so that doesn't bother me much apart from Christmas time.I don't smoke but at least my lungs are ok !

      Keep in touch please and let me know how your going on.Yvonne

    • karen41728
      karen41728 yvonne19574

      Posted

      Aww hi Yvonne

      sorry to hear about the problems you had trying to speak to me it's so annoying and bloody frustrating, you have had some bad luck with your husbands, must have been so stressful for you, I wonder sometimes why good people have to suffer it's just not fair and bad people just get away with murder.

      It's great to talk with you Yvonne I wish I could say I was feeling better today but I'm not my scalp just won't stop itching I do think sugar and acid sets it off but bloodyhell can't we have any pleasure . I don't smoke just have the odd drink which sets it off it's so annoying.

      Hope your having a good day today at least Cornwall is beautiful I havnt been since I was a little girl but from what I remember scenery is lovely.

      Think I might have to go to doctors soon about this itching but I hate doctors they scare me to death. Terrified of this thing becoming cancerous sometimes I wonder if italready has done.

      Good job I don't want another man I'mn my life im just not interested and sex would just be a no no anyway, have you noticed hair loss with this only I have on different parts of my body I hate it hair us really sparce down below now .

      You take care Yvonne speak to you soon Xx

    • kathryn07219
      kathryn07219 karen41728

      Posted

      Hi Karen,

      I have been following your correspondence with Yvonne but thought I would just add to the conversation:  I have noticed a lack of hair on my body too - pubes, underarm, legs - head!  I am sure it is all connected.  It would certainly make sense as, after all, nails and hair are made of the same substance and several of my nails are now so transparent they are very close to disappearing completely.  Also, my Lichen Sclerosis has left me with a very much reduced vaginal opening (and I think it has also affected my urinary tract as I get almost no warning now before I need a wee!).  My gynaecologist has suggested that I have a procedure under GA to widen the opening (it's called Fenton's Procedure).  I just wondered whether anybody else had had this.  I'm not sure what the long-term results will be.  Bearing in mind that LS is incurable, although it is under control at the moment, what happens if it flares up again?  Won't the skin be damaged again and will that mean another op?  I'm interested to hear you aren't keen to go back to the doctors - I am under regular review by the gynaecologist and am surprised that others aren't too.  The whole reason for the regular reviews is to keep an eye on the situation and spot any changes in tissue ie precursors to cancer.  I am beginning to think that I am one of the lucky ones who has found a decent consultant who is familiar with the problem.  The gynaecologist who diagnosed me (who is now working in the Lake District and Newcastle - lucky patients) was incredibly kind and understanding.  He said I must treat this condition as my friend who would be with me always and who needed caring for.  Lovely way to put an awful subject.

    • karen41728
      karen41728 kathryn07219

      Posted

      Hi Kathryn

      Good to hear your response that was a lovely way to end on this subject never heard that before, I thought only lichen planus would affect body hair didn't think it was LS. How old are you and how long have you had this have you ever had a problem with abnormal smear test. Please keep me posted.Xx

    • kathryn07219
      kathryn07219 karen41728

      Posted

      Hi Karen.

      I'm 56 - I have both lichen sclerosis and lichen planus.  I noticed the hair loss with lichen sclerosis before it crossed over to lichen planus.  I was told that it was "rare" to have LS on my back as well as genitalia and I was told it was "rare" to have a cross over to LP.  I suspect "rare" really means not enough GP's have referred patients to consultants who know a bit more about it!

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.