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.
I'm no expert on LP but some of the other correspondents on this site are. It does sound like oral LP and I too have some mild symptoms and am reserving judgement. What I have learned over the past couple of years is that GPs don't know very much about lichen planus or lichen sclerosis. I had to research my lichen planus of the nails and then tell my GP what I thought it was. He didn't agree but referred me to a dermatologist who confirmed my diagnosis. Lichen sclerosis was diagnosed by my GP practice's locum - an older and wiser lady - although, again, I had researched it and already come to the same conclusion. This is an excellent site for sharing info and I am sure you will get an informed reply soon. Good luck.
Hi, I was diagnosed with olp last year by my dentist. Went to the max fax unit at the hospital, had a biopsy, piece from top left gum and tongue taken and diagnosis confirmed. I have stayed away from all fruit except bananas, and those only occasionaly. I don't drink very much coffee and sugar also irritates it. I have the red sore and white lines on my gums and cheeks and white places on my tongue which get sore sometimes for no reason I can think of, except of course stress out tiredness bring it on. So, I ise herbal Colgate toothpaste which still has fluoride in and my dentist approves of, I rinse occasionally with prednisalone tablets to help before and after meals, and have a mild hydrocortisone cream, less than 1% which you can buy over the counter in the UK and have been told I can use that on my mouth sparingly up to 7 days on one session, but no longer. I tend only to use it a couple of time and it brings relief. Other s on this site will offer you other alternative ways of dealing with it and you will have to try what's best for you. The good thing about this site is that we are all trying to help each other and when you can't cope, post something and someone will be there for you. It isn't a condition a lot of people have which is why there isn't massive info about it, but stay with us here and get your support. I hope you see some improvement very soon and try. It to worry too much. I always ask my dentist to look in my mouch to see if there is anything which he is concerned about and if he says no, I am putting my faith in him. You take good care and I hope some of this info helps you. Gail
Thank you Gail for all your suggestions. Until I can get to the bottom of it with the doctors, I will try that toothpaste you suggested because the mint in the toothpaste I use now really burns my mouth. Don't even get me started on a little salsa. My cheeks burned for a couple hours yesterday after having just a little in a soft taco. I'm also getting that steriod mouth rinse today so I'm hoping that helps. I just wish that all those dentist in the past would have given me better advise so I could have gotten on this sooner. I'm in the US (California) so medical and dental care really lack here. I was told by one dentist a month ago that I had 6 cavities then went for a second opinion and was told I had 1 cavity. :0 so that is why I say that. Thanks for your well wishes and I will stay with this blog because this is the first time I have felt I am getting closer to getting relief.
Hi Kathryn. Thanks for the resonse. This is the first time I have felt I am actually getting somewhere with this. I'm in the US ( California) and I am so shocked of the care I have been given. I have all but one symptom of OPL so it's frustrating that no one could figure it out. I wasn't until a recent detanl visit where the dentist mentioned how my gums are blood red and was very worried about me. I knew they didn't look normal which was why I was there. Dentist here won't even do a basic cleaning here until they do a scale cleaning but then no one would do both because of my sores. I feel like a tennis ball going back and forth. Until yesterday seeing the ENT and the doing my own research and finding what he mentioned OPL. Finally! I am so anxious to get treatment started. I just worry that it took 5 years to get to this point. Thanks again!
ckitefly, now that you've been officially diagnosed with OLP, I would suggest using great care in what you eat. Mouth sores can turn into oral cancers, so it's something that requires frequent maintenance. I had no idea I had OLP until a sore developed on the inside of my cheek and ended up being diagnosed as squamous cell carcinoma. That led to a couple of years worth of surgeries, chemo and radiation therapies.
There are a number of triggers for OLP, though it's rare enough that many doctors don't think about it. There are reactions to medications that can trigger it. Dental work (such as certain metal fillings) too. For me, it seemed that spicy or acidic food exacerbated it. Tomatoes with salt would make my mouth burn. Look at your diet and try to avoid those kinds of foods. I've read in a couple of places that nightshades (tomatoes, potatoes, eggplants, peppers, etc) can impact OLP because ot the alkaloids they contain.
One thing to stay away from: High alcohol mouthwashes like Listerine. My ENT is convinced that that's what triggered my oral cancer (since I don't drink or smoke.)
He also prescribed something called Lycopene, which is a tomato derivative and should be available in the herbal supplements section of your local pharmacy. That has research behind it. 8 mg was prescribed, but I think that the 10 mg version is what's sold.
Getting this under control will require you to be persistent. Keep bugging your doctors for answers/referrals.
Best of luck!
Awesome information so thank you very much! I will do that. It's frustrating because I have mentioned most of what you said to doctors in the past. I actually went to an Oral Surgeon and he looked at my mouth and said it didn't look like cancer then proceded to pull out a book and look at the pictures with me and said "no doesn't look like that". I am worried about Oral Cancer at this point because it's gone on for so long. My ENT didn't seem to think that it was but still wants to do the biopsy which I am all for if that gives us answers. Food really triggers the sores so those suggestions are helpful. It's funny how you mentione dental work and metals because the sores started right after I got metal fillings in my mouth. However, what I brought that up, I was told no and maybe mostly because the fillings are on one side and the sores are on both. I am on blood pressure medication so I should check to see if that could possibly be it too because it was also around the same time I changed to what I am taking now. It has managed to keep my blood pressure normal but still I'm sure my body could react bad to it this way.
Thanks
Carolyn
I have had OLP & it seems you have too. The biopsy on mine came back non cancerous. The white spots are what confirm it for me, that plus the pain when you eat certain things, mainly hot drinks & curry's, chilli's all the things I love to eat, I have had to give up. The mouthwash does help if you use it often. I also had the swelling, causing me to bite my inner cheek. I was diagnosed by my dentist, who refered me to a Maxilofacial Clinic, where, lo & behold, hewas the doctor there too! It's an Imune system problem, but it is gradually getting easier after 3yrs. A very unpleasant illness, but there are remedies, it just takes time. I wouldn't be too concerned about cancer though. It's very rare.
Thak you for the response. That helps my stress on that. Question. Did you even have numbness in your tongue? I get it off and on and not sure if that is something related. Also, did you shows signs in your gums too? Mine are blood red and I was told that's the gingivitis part of it too. I was told to get an antibiotic mouth wash for that part of it too. I don't eat a lot of spicy foods so that won't be too hard. Hot foods bother me the most. Like french fries. It feels like it burns new sores everytime. Can't even chew gum either. Thanks again! Cheers from California !!
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.
Has anybody tried Emuaid - advertised on this website - and, if so, any success?
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?
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.
Good to hear. Thanks so much for your feedback.
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!
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.
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!
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.
Hi just wondered if you have lp anywhere else or have ever had any trouble with abnormal cells from a smear test through hpv only I have and think they are both related because of this virus xx. Keep well xx