Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I’m new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I’ve seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I’ve. Even advised to go to the Mayo Clinic in Rochester but I’m really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

Liked by fancyrph

@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!

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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).

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@becsbuddy

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

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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! 😔

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@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

Liked by lioness

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@becsbuddy

@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

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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.

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@mrsdavis1

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.

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@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is your son doing well? Just take your notes and go to the dermatologist. Explain the story to her/him, write everything down, find out if there’s a specialist you could/should see and take charge of your health! You seem like someone who can do this! Best of luck! Becky

Liked by lioness

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@becsbuddy

@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is your son doing well? Just take your notes and go to the dermatologist. Explain the story to her/him, write everything down, find out if there’s a specialist you could/should see and take charge of your health! You seem like someone who can do this! Best of luck! Becky

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My son was born with PFFD (Proximal Femoral Focal Deficiency) which is now referred to as CFD (Congenital Femoral Deficiency). He had reconstructive hip and knee surgery along with a pelvic osteotomy at 4. He’ll be 10 this month but we’re getting him prepared for staging to remove his hardware (6 titanium screws) before surgery number 3 of 6 remaining. He’s a special little guy and he’s strong. He wears a non-standard prosthetic leg now but when everything’s all over he’ll walk on both of his natural feet. As for me, I’m going to go to the dermatologist but I won’t be too quick to let them cut anything off of me.

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@mrsdavis1 YOU ARE ONE STRONG WOMAN! WOW!

Liked by mrsdavis1

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@jshdma

@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!

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sorry I sent to wrong one

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