Erosive oral lichen planus

We’re both handling our health the best that we can right now. Thank you again for your time and input!

OLP is treated with steroids. They usually work.

Hello, @mrsdavis1 That all sounds so difficult! I’m so glad you found MayoClinicConnect. I’m a nurse and I agree, doctors don’t know everything. I read an article that said that they never learned about autoimmune disease because most are too new. Mine, included. Are you anywhere near the state university medical school? They have excellent doctors . One woman found a specialist dentist who diagnosed her. I sure hope you find something! Try large medical centers, medical schools, and rheumatologist. And look thru all the previous posts on OLP. Everyone has such good ideas. Be sure to let us know how you’re doing

Most of my specialists are practicing in a university medical center I hadn’t brought this up to them yet. I started with my OBGYN and the dentist but I will definitely fill them in and see if I can get some answers and relief. Thank you and I’ll keep you updated.

To all of us suffering from Oral and the other Lichens, my heart goes out to you. I have been seeing a dental/Pathologist at our nearby medical college. She has been helping me with different meds but as with most of us, not a lot does the trick we want. ( for it to just go away) However we are still trying things and I am now taking a trouche 4 xs a day that I disolve in my mouth. This is treat my yeast like thingy that just started. Dr. says it from too much prednisone I was taking. I also use Triaminalone 0.5% ointment 2 x's a day for my OLP. It does seem to be helping, in that it keeps it from getting worse and is livable for me. Good luck to us all. Please everyone, keep us posted with all and any help you are getting. Prayers to you all.

@grammlyn-- I have seen the TOP specialists in NYC and Boston. Essentially there is almost nothing that can be done about burning mouth syndrome and OLP. The treatments are too extreme and hardly work anyway. Having these conditions for years, my mouth is now deformed: swollen tongue with scallop-like designs around the edges and distorted lips, with saliva leaking out on both sides. One of these docs told me anxiety and worry is a major factor, and when you stop worrying, it will go away. I don't believe that!

I started taking therapeutic calcium for another problem & the EOLP pain has gotten so much less since then. I will continue this. I’m actually able to eat corn on the cob, pickles, salad items & other crunchy foods that I had to avoid for the past 5 years since developing erosive oral lichens planus (biopsied).

Hello again I’m back with an update. So my OBGYN left to pursue her career elsewhere and I made an appointment with a new one because of the painful lesions on my vagina. After discussing the possibility of LP and my 10 year history of my vaginal issues and recent recurring oral ulcers, she did a biopsy. I ended up with an infection at the site a few days afterwards. However, now I’m just left with more questions and confusion because my biopsy results were normal. How could this area that always swells up with painful legions be “normal”!?! Plus the white skin areas on my brown body...sorry I’m African American. Then the constant oral ulcers among other things, I was sure I had LP. Then she says well if it’s bothering you then we can send you to a dermatologist to “remove the area!” I feel like I’m going crazy! It’s normal but let’s cut half of your labia off since it’s bothering you! The other issues well you can just deal with on your own. Of course she didn’t state it like my previous two sentences but in my mind that’s what I heard. In a totally unrelated situation...this is similar to what my dad has experienced. He had biopsies done on his forehead and scalp due to some significant skin changes yet every time they tell him it’s normal. It started out about the size of a pencil eraser but now he has two tangerine sized areas on both sides of his head that are getting worse daily. Again they ALWAYS tell him everything is just fine! I don’t know maybe we have some underlying genetic skin condition that hasn’t been figured out. I know that recently I found out that I DO carry some recessive mutated gene when they did my cancer screening. Maybe I should have a through genetic screening from head to toe, since they only screened for certain things. I’m sorry I’m rambling but I just have lots of questions now! 😔

@mrsdavis1 Good morning, again. I say ‘again’ because I had typed a whole answer but then I lost it. 😑. As a nurse, I would suggest that you take your doc’s advice and go to a dermatologist. Get a good evaluation, no surgery! Also, look into your family history. Has anyone else had this problem? Your Dad’s parents, siblings grandparents, etc.? Maybe find a dermatologist at a university or major medical center. I really wish you luck—health can be so frustrating!! And, no one understands unless they’ve also had a problem. Becky

Thank you Ms. Becky! I’m definitely not giving up. It’s an easy fix to just cut physical pieces of people off without having to work to find a solution. However, the psychological impact is the most damaging in my opinion. It’s ironic that life has me going through the same cycles but in slightly different positions. Today it’s my time to decide to remove a part of my labia. Ten years ago I decided to not amputate my 8 day old son’s leg. Two totally different people, body parts, and varying degrees of disfigurement yet both would’ve been a one time procedure to eliminate a health issue that just needs more time to figure out.