I’m looking for some advice I have had a problem with my mouth for sometime. In the past 6 months I have been at the dentist regularly asking about what is this pain in my mouth ulcers, burning etc to be told it was burning mouth syndrome. I noticed marks on the side of my tongue again to be told burning mouth syndrome. I felt as if I was going mad it was awkward to talk, I was producing extra saliva it was embarrassing.. I decided on the 23 / 12 to go to the gp ( given an appointment with temporary dr). I pointed out the lace mark on the side of my toungue and cheek she said it may be thrush not sure but you have been on a lot of antibiotics recently( I was for sinus problems, currently been referred for Schrogrens ) so I will treat you for thrush. Still no difference and to be honest it’s getting me down . Went back to the dentist 3 times in January again told burning mouth. I decided to make an appointment with our surgeries best GP 3 weeks waiting to see her and as soon as she saw my mouth she said that is ‘lichen planus oral’ I need to refer you to oral medicine. I could have cried I have been in so much pain . She also advised me that I was referred to rheumatology (schrogrens) two years waiting . She said everything she believes is connected . I don’t have any private health care but I’m willing to go private but who is the best person to see in relation to all of this. I contacted the hospital today to say my urgent referral had come in from my gp but they need to triage and if they think it’s urgent the waiting list is 65 weeks . If I thought I would have to continue living like this I would sooner just slip away because every day that passes is making it harder to do my job I am just not coping.. any advice or help would be greatly received.
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Hamer5
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I am really sorry to hear your problems. It makes me so cross that our NHS is costing so much but people are suffering! It sounds to me as though you've got an infection and it could be a fungal infection if you have been on antibiotics. Antifungals can be taken as a tablet that you swallow - systemic - i.e. it would absorb into all your body. Or you can take it as a topical, which you dissolve slowly in the mouth and it kills the fungi. What did she give you for thrush? Take care.
The medicine was a liquid and it taste like aniseed and didn’t help in the slightest . The doctor has said it is Lichen Planus Oral. It really miserable . Thank you so much for your help and advice.
I'm unsure whether this could be ameliorated naturally by frequent rinsing with organic apple cider vinegar (the type with the mother as the probiotic bacterial culture may kill the lichen planus). If that stings or you find it unpleasant, you could try using kefir repeatedly as a mouthwash, & also a drink. If you get a live culture & ferment your own, the probiotic micro critters (a symbiosis of beneficial lactobacillus, yeast, & streptococcus) might be able to kill off the lichen planus. It will also help benefit your git bacteria & boost your immune system & health in general. It is available in shops, but the commercial kind contains only lactobacillus, & isn't very live or the bottles would explode on the shop shelves.
Some articles online suggest it's an autoimmune response, as is Sjogren's syndrome. Assessing your diet might be helpful to you. Pehaps try avoiding gluten, though it takes a full 3 months to get rid of gliadin (gluten protein) antibodies from the body, & even one toast crumb would cause an autoimmune response. Other people find it helpful avoiding dairy products. Make sure you eat healthily to ensure a good intake of micronutrients, & avoid all processed foods that may be a trigger. Chris Kresser (a functional medicine practitioner) has a lot of useful & free advice on his website regarding eating for autoimmune disorders.
I’m sorry to hear you’re having such a problem with your tongue.
I was diagnosed with oral lichen planus about ten years ago. The white lace-like pattern is typical. The first attack was very painful; I couldn’t talk, eat or swallow; it was the underside of my tongue that was affected. My dentist referred me to the maxillofacial department of the Queens Medical Centre and the consultant immediately recognised it as lichen planus. In all the time since then I’ve only had three bouts of it and none was quite as bad as that first one.
The first thing I did was get rid of any toothpaste with sodium laurel sulphate. I use Optima Aloe Dent Sensitive toothpaste and Dr Organic tea tree mouthwash daily, both from Holland and Barrett.
Also when you are in pain I suggest the following:
Eat bland nursery foods such as, for example, mashed potato, rice pudding, soups (not too hot) and scrambled egg. Don’t eat or drink anything acidic such as orange juice, tomatoes etc. until the pain has abated.
A spoonful of Manuka honey held in the mouth is helpful or Manuka honey lozenges held against the painful area, also garlic pearls helped me.
Caroline thank you so much for your help, I feel at the moment I eat nothing but fage ( Greek style yoghurt) or things that are cold. I used to enjoy very hot spicy food , oh goodness even any hint of spice and I could cry with the pain . I just don’t understand why I got this . 😢
Don’t panic! You can eat spicey curries and jalopenos again when your mouth is no longer painful. The wonder of tea tree oil is that it is antibacterial,
antiviral and anti fungal so is magic for various mouth ailments. I like the Dr Organic mouthwash but you could add a few drops of tea tree oil to a small glass of water and swill that around your mouth before spitting it out if you prefer.
I know it can be a very painful condition (I have seen it described as like chewing on razor blades and at its worst I can agree with that!) but if you take care not to aggravate it, it can get better and then you may have long periods of respite. As I’ve said before I’ve had three bouts in 10 years.
I have never been given any medicine for it but have coped well with the pain when it arises by eating bland foods very carefully and using mouthwashes.
I also rinse with the Dr Organic Tea Tree mouthwash with aloe vera etc in it. I have to rinse again after swilling with it, with water as it stings a bit after. However, I'm sure it calms my mouth a bit though.
I really do like that Dr. Organic mouthwash! It does tingle a little when swilling around my mouth but I just spit it out and leave any left in my mouth to do its job. Tea tree is a powerful antibacterial, antifungal and antiviral. I can’t remember my last bout of mouth pain from lichen planus. Mostly I don’t notice I have it at all although the lacey pattern is still there. I do have to be careful with toothpaste as mentioned before but otherwise I can eat pretty well everything I fancy with no problem - even spicy foods and jalapenos!😊
I know I still have the condition because if I apply pressure very deliberately to the area affected it is a little bit sensitive but I can honestly say it causes me no trouble. At the moment at least.
However I do recommend quick action at the first sign of discomfort: bland, nursery food, possibly a garlic supplement and manuka honey held against the sore area. SLS-free toothpaste and the tea tree mouthwash form an important part of my daily routine.
Hope you and Hamer5 soon find an effective way to cope with it.
Mine was caused by a badly placed amalgam filling that had sharp edges and cut my tongue. I guess it was an allergic reaction initially.
Had mild discomfort for about 2 years before diagnosis! Should have pursued it earlier but my mother had dementia at that time and for years that distracted me and my sister from thinking enough about our own health. I was fortunate that it was not something more serious.
In my experience it doesn’t go away though I have heard people say otherwise. On the other hand it has definitely improved in my case. I have learned how to deal with it when it flares up and I find the painful bouts have never lasted longer than a week. I see my dentist every 6 months as recommended by the hospital consultant and visually it has never changed.
Hi Hamer5. It is considered rare for Lichen planus can evolve into oral cancer, but it does happen. If your lichen planus is the erosive or ulcerated type, the risk of it developing into cancer increases. If you have lichen planus and you smoke, drink, have poor fitting crowns or dentures with sharp edges that create lesions, this can develop into erosive lichen planus and an increase of cancer risk.
I know of a patient who had lichen planus. She ignored it. It grew. She ignored it even further and it developed ulcers. By the time she pursued dental and then medical care, it was too late. Her lichen planus had developed into oral cancer that had spread to her maxilla (upper jaw) and mandible (lower jaw). She had to have half of her face resected. She lost her lower teeth and lower jaw on one side, in addition to the upper teeth and upper jaw on the same side. She had a skin graft from the skin on her upper leg. I last saw her in November. She is doing well. She no longer has her feeding tube and is learning to eat solid food again.
If you or any one that you know has ulcerated or erosive lichen planus, please make sure it it biopsied to rule out oral cancer.
I thanks for the advice. I don’t smoke and very rarely drink if I do it’s a gin but to be honest I don’t bother. What is making me cross about this is that I have seen my dentist on several occasions and she kept saying there was nothing there. When you can see the white lacy marks inside my mouth and on the side of my tongue. It was my wonderful gp who I waited three weeks to see has made the referral.
ShootingStars is quite right but lichen sclerosus is more risky from the viewpoint of cancerous change. I understand that the risk is very much less with lichen planus, especially in non-smokers.
I did have a biopsy but the consultant at the hospital said the biopsy wasn’t really necessary as he was confident it was lichen planus and nothing sinister. I had the biopsy for my own peace of mind. He was also very reassuring about the cancer risk, said it was very unlikely but that a twice-yearly visit to the dentist was a good idea just to check that all was well.
The lacey pattern you have described is typical of oral lichen planus. I do hope you get sorted soon.
I go to the dentist every 3/4 months and this still wasn’t picked up and it’s the second time something has been missed and beginning to think the dentist doesn’t believe me when I say about my mouth.. I will be changing dentist ! Thank you for your help x
I have Sjogren’s in addition to Hashimotos and regularly suffer with thrush, mouth infections AND oral lichen planus ( the worse and most painful of them all). It’s impossible to get a GP appointment when I need one and few health professionals know enough about OLP (relatively rare) to know the difference between that and other oral conditions. I recognise the white, lacy marks in my mouth and the symptoms so use prednisolone (I now keep a spare box of vials at home) as a mouthwash. This gives me relief within a week. It really IS like having shards of glass in your mouth, and I find it very distressing. For thrush or mouth infection I swill with nystatin oral suspension and that DOES make a difference but will not work for oral lichen planus. It’s vital that your GP/ dentist/rheumatologist recognises the difference between the conditions in order to treat you accordingly. I hope this helps you; I can relate to your frustration and despair.
Hi the nystatin didn’t absolutely nothing for me but then I didn’t have thrush in the mouth I actually for it irritated me more. Currently I’m looking to find a good rheumatologist in Northern Ireland that specialises in these conditions.. there’s a two year waiting list so I do need to go private. The problem I have is it seems to come like flare ups ( the only way I can describe it ) I will have the dry nose burning sensation mouth, eyes then settles. I constantly seem to be battling with temperature spikes like I’m coming down with something and night sweats ( not all the time) I just feel like my body is constantly fighting infection and I’m tired and drained. I’ve had joint pain and the heel on my foot is so sore that if it touches anything it just stings so I’m constantly limping to protect it ... sorry moan over . Thank you for messaging x
I think you need to ask for a referral to a dental hospital.
I have been through the mill medically and also have Sjogrens amongst a host of other AI illnesses. My mouth was sore for years until one day I went to my dentist and it was a locum on the verge of retiring. He said he thought I had Lichen Planus in my mouth, (I also have genital Lichen Sclerosis.) He referred me to the MANCHESTER Dental Hospital where I saw a Professor of dentistry and he confirmed it was Lichen Planus and he prescribed a steroid cream with a quick drying cement to keep the steroid in place and a Clenil inhaler. The cream and cement were difficult to apply but they cleared my gums of infection. The Clenil Modulate inhaler has been my godsend! It’s WONDERFUL! Every time I feel it coming on I use it one puff held in my mouth (not inhaled) on one side rolling it around my cheeks and gums for as long as I can then a second puff doing the same on the other side. It clears it up within 2-3 days. I haven’t needed the steroid cream and cement since I initially cleared the problem. The cream and cement are Audavate 0.01% Cream and Orabase Cement or Betamethasone Balerate 0.1%. I’m sorry it’s so long since I used the cream I can’t remember which one it is because I have 5 different creams and these 2 are similar %’s.
I hope this helps you. Please would you update us on how you go?
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