Hi, Brie. You sound very self aware, a quality I admire a lot. Sounds like a big biopsy you've had! I had a lichen planus lesion removed from my tongue some years ago and experienced similar pain. After the anaesthetic wore off I was in such agony that I went to an after hours clinic where it took them hours to get in top of it. My point is that it can be the nature of the beast - there must be lots of nerves there. Mine stopped hurting after a shorter time than yours and it was cancer so I don't think you can read anything into the pain.

You are a very eloquent person and somehow need to establish a line of communication with your doctor, one that might enable you to trust him. My problem with my lichen planus was that it wasn't biopsied for a couple of years or more because the oral surgeon thought it looked bog standard ... until it didn't. I had reason to be disappointed in him but at least your doc has biopsied you.I think they do so as a last resort because it IS so painful.

When the pain has died down, and you feel better, maybe you can think about the matter of a second opinion. I remember looking online for a doctor who had written research papers on lichen planus and emailing him. It's a horrible condition when it becomes painful and I fully understand your frustration with it.

Hope the pain eases soon and some of the anxiety with it. I'm thinking of you and know exactly how you feel.
Maureen

I would definitely be asking for a referral to an ENT with experience in oral cancer. The pain you have is normal - tongues are very vascular and nervy. But I would still want it to be monitored by an ENT. Hugs, and feel better

I will definitely be following up with an ENT. I am really starting to get worried. The pain has barely gone down and I don't want to take these pain meds long term. I am starting to get scared that he left me with some kind of permanent pain. I usually heal so fast and well. I don't get this...

To give you better advice, a location may help. Seeing an oral medicine specialist in your area(not necessarily an ENT, as they are surgeons who usually want to cut).

When last I discussed patients with chronic dysplasia of the Front of Mouth with Dr. Edmund Truelove and Dr. Dave Dean of the University of WA (one of the top programs in the US) they vary in recommendations based on many factors.

For those with chronic, reoccurring dysplasia (lichen planus, leukoplakia, etc) they recommend a few different protocols (such as dietary supplements like turmeric, and even low dose chemotherapy) as having it removed every time poses obvious issues due to the frequency of occurrence.

Working with an oral medicine specialist (like our own Dr. Ross Kerr of NYU on the Science advisory board, a product of the UW's Oral Medicine program) from a respected program would be beneficial to you. They tend to see more cases and familiar with current treatment protocols, and the latest research.

Keep your head up and as previously stated, "it's not cancer until a biopsy says it is" so try to keep your stress levels down (difficult I know) as it will only weaken your immune system if you don't.

Hope that helps,

E

Alpaca, why thank you. Years of "stuff" will do that you. If you heard me trying to talk, I sound like I have a bajillion marbles in my mouth so i'm glad I sound ok on here lol The pain is very slowly going down. I've never healed so slow in my life. I think I will do what you did and hunt down someone like a research specialist.

It really saddens me to come on here and find people more educated than actual doctors. To find people that could have been helped sooner if it weren't for their doctor's lack of knowledge. I am very thankful for all the feedback. I plan to follow up with an ENT or another oral surgeon soon and keep a close eye on things. EricS, thank you for all that information. I have done my research and found the few studies supporting anything helping much, but there was promise with High doses of Lycopene, which I just started in pill form and as for Turmeric, I do take that too, but in a soup kind of form. As that is the only way for it to really absorb into your body at the amount you need.

Getting biopsies probably pisses it off, i'm sure. That was a worry of mine as well. What if we aggravate it? As cancer often comes from constant irritation.

Regardless, I have really odd things that go on in my mouth. My papillae is raised and keeps raising. My last ENT I went to for sinus issues years ago that never really helped, thought nothing of it, but that's for another forum.

Thank you again so much for all your info and patience. There are amazing people here for support and guidance. Smart people. May you all stay well.