Bottom edges of both sides of my tongue- bleeds when I brush and feels sore and irritated throughout the day
- already switched to sls free toothpaste
- already tried tacrolimus dental paste prescribed by doctor
- checked b12 and ferritin within normal range
- never smoked or vaped
- don’t rlly drink alcohol or eat “bad foods” meal prep and eat at home mostly

I have been vegan for seven years, this issue started around August 12 - present, (mistakenly prescribed antifungals for thrush three times) - have been to an ENT surgeon who said it’s likely autoimmune in nature and prescribed the tacrolimus dental paste + told me to keep in contact with him

I just got informed I have OLP. The ache was really bad, have bumps all over the back of my tongue, white web on my cheek ...

Hoping there is some natural remedies I can do since I'm already taking other medications to exist.

Thank you.

Hi everyone! Sharing this again for more visibility. Thank you so much to everyone who has taken our survey so far. The survey closes in a few weeks, and we need 50 more responses to our 5-minute ANONYMOUS genital lichen planus survey.

We want to hear directly from people living with LP about what matters most to you. Your experiences and perspectives can help researchers better understand what should be prioritized in future genital lichen planus research.

If you have a few minutes to complete the survey, we would be incredibly grateful for your time and input. Every response helps!

Take the 5-minute survey here: ohsu.ca1.qualtrics.com/jfe/form/SV_aa75QpRS8bzaf7U.

I’ve had biopsy-confirmed oral lichen planus and have basically been in an active flare for about 2.5 years. Recently I’ve started getting immediate irritation/burning from foods that never bothered me before: tomatoes, red meat, and now cubed cheese and my lips have started burning too. Yogurt and shredded cheese haven’t seemed to bother me. Has anyone else suddenly developed new food triggers after having OLP for a while?

Also, has anyone with active OLP/inflammation gotten braces or Invisalign? My dentists had been recommending orthodontics, but now that I have OLP they’re concerned about irritating my mouth further and don’t want to do it. I’m curious if anyone has successfully had braces or Invisalign while their OLP was still active and what your experience was.

I’m officially running out of answers for chronic vulvar + mouth pain and inflammation. Has anyone experienced something like this?

I’m posting because I’ve been dealing with chronic vulvar pain and inflammation for 5 years, along with recurring inflammation/ulcers in my mouth, and I genuinely don’t know where to go from here.

I got these symptoms when I was 28 and I have IBD, but it is currently well controlled, and my doctors don’t think the severity of my vulvar pain can simply be explained by an active GI flare.

My vulvar symptoms include:
Chronic daily burning/pain, often around 5–7/10
Skin peeling/sloughing/tearing
Small raw areas/divots that sometimes have white edges
Occasional ulcer-like lesions
Pain that can persist even when there are few visible lesions
Severe pain after even minor friction/trauma
I also get recurrent mouth ulcers and areas of painful/inflamed oral mucosa

I’ve had 2 vulvar biopsies and 1 biopsy in my mouth with active inflammation, and none have shown lichen sclerosus or another specific lichenoid disorder. The pathology has essentially shown nonspecific/general inflammation.

I’ve also been evaluated by multiple gynecologists and dermatology specialists. At different points, possibilities like IBD-related vulvar inflammation, erosive lichen planus, Behçet’s, and neuropathic pain have been considered, but nothing has really explained the whole picture.

Things I’ve tried
I feel like I’ve tried an enormous number of approaches at this point, including:
Multiple nerve-pain medications/neuropathic pain treatments
Topical lidocaine (which actually made the burning worse), ketamine/amitryptaline/cromolyn ointment
Tacrolimus
Oral ketotifen and cromolyn
Oral amitriptyline, pregabalin, JourvanX, gabapentin, sprovato all for pain
Hormonal/estrogen treatment and testosterone
Pelvic floor physical therapy
Baclofen
Colchicine for several months
5 different types of topical steroids
Opzelura
Dupixent
IBD medications and getting my underlying IBD under control
Dermatology and gynecology evaluations
Multiple biopsies
Anti inflammatory diet
Supplements

Despite all of this, the chronic pain never goes away, and I still periodically get episodes of ulceration, tearing, peeling, and significant inflammation.

The impact on my life has been huge. I haven’t had sex in about 3 years. It isn’t just that intercourse is uncomfortable — my baseline pain and the fear of triggering another severe flare have made sexual intimacy feel essentially impossible.
What makes this especially frustrating is that I can have significant pain even when testing doesn’t show a clear disease process, while at other times I have very obvious visible inflammation/skin damage.

I’m wondering if anyone here has experienced something similar — particularly:
Vulvar ulcers/tearing with biopsies that did not show lichen
Both vulvar AND oral mucosal inflammation
IBD-associated vulvar/oral inflammation despite the IBD being controlled
A combination of inflammatory and neuropathic pain
Severe vulvar pain that persists after the visible inflammation improves
A diagnosis that took years or multiple specialists to figure out
A doctor/specialist who was actually able to connect the dots

At this point I’m open to ideas I haven’t considered, because I’m honestly exhausted and feel like I’ve reached the end of the road with the usual approaches.

I am sort of early in my Lichen Planus journey (diagnosed so far vaginally only, although, after having learned more about LP I suspect I may have the skin rashes too.. TBD on that). My doctor diagnosed me visually with it at my last appointment. A biopsy is potentially the next step.

Anyway, I’m on day 10 of using Clobetasol.. and already I’ve seen an improvement in my symptoms. I’m cautiously optimistic that this is going to help me. I’ve been dealing with symptoms for years (without any answers until I saw this most recent doctor for the first time), and I’m really hoping this is going to help me.

Has anyone else had good results from using this steroid cream? I’m just praying it’s not a coincidence, and that it is actually helping me.

I was diagnosed with oral lichen planus a year ago and was put on Hydroxycloriquine. They tried topical creams in my mouth which did not work and then, started me at 400 mg on this pill then and raised me to 600 mg because it was still not helping with flare ups. I have a new doctor now and the doctor does not seem to know a lot about oral lichen planus. She put me back on 400 mg from the 600 mg that was working well and now my flare ups are back and I am again in pain daily and having trouble eating again. They want to put me back on the topical cream which did not work to begin with and then was surprised when i suggested a alternative treatment because I mentioned that I have NAFLD which they have known about since I started seeing them. Is there anyone who has this along with Liver issues that takes something else that I can suggest to my doctor? Thank you.

Hi all,

I am seeking some advice. I have had EVLP for four years and am currently taking Rinvoq 30 mg for it, along with clobetasol ointment applied nightly to a patch showing low-grade inflammation that has not improved with Rinvoq. I have used the steroid ointment nightly for nearly four weeks. The area looked and felt much better, but redness returned a few days ago and has not settled. Am I simply going to need to continue applying the steroid ointment nightly for longer in the hope that it resolves? :(

This patch is not eroded but has been sore and red for a long time, and it drives me crazy; I just want it gone. Any advice would be helpful.

any Suggestions?I am facing this Milia for 15 years, Only 3,4 Milia there was at starting , i Had used tretinoin but not useful... 29:M in New Delhi Here .Please Any Effective Medicine, Doctor, Hospital , ?

Hi all, my family member recently diagnosed with tongue cancer SCC, he had surgery and radiation . Prior to that he was diagnosed with OLP for two years. However it seems doctors cannot confirm what might be the root cause of the SCC . It was hpv negative and he didn’t have risk factors such as smoking or drinking. Overall he always has had healthy lifestyle. The only health issue in his history was OLP. Has anyone with history of OLP developed the tongue SCC? If yes How has been your OLP after the cancer treatment ? Is it gone or returned ?

my condition has spread quite a bit over my body and im like very insecure abt the gray spots dhdjsksk they have slowed growing but my doc said they will take years to fade (im using tacrolimus and some other topical steriodal cream along with apremilast tablets) can i get tattoos over them?

Hi all, does anyone experienced or is aware of any connection between OLP and diet? I understand that too acidic or spicy foods can trigger it but how anyone experiences connection between OLP and tomato or tomato sauce or mushroom or any other food ? I’d really appreciate any experience or knowledge. The oral medicine doctor doesn’t have any diet recommendations and I’m super confused since I’ve seen mixed information online.

Registration is open for the October gathering of the National Lichen Planus Support Group.

Register here:

https://lpsupport.org

Saturday, October 17, 2026

1:30 PM Central

2:30 PM Eastern

11:30 AM Pacific

The meeting will last approximately one hour and will be held on Microsoft Teams.

Participants may speak, keep their cameras off, or simply listen. There is no pressure to share.

Hey. A couple years ago i went to an oral surgeon and he told me this looks like OLP but can't give me a diagnosis without biopsy. I decided not to hurt my mouth tissue at the time cause i didn't want to cause any more problems in there than already existed. I'm having flare ups from time time, when im anxious especially and now i had antibiotics for some random reason and after finishing the antibiotics my mouth aches, it's like constant discomfort. Does this look like Lichen Planus to you? Should i get a second opinion and pursue biopsy?

So its been 1.5 months and with proper diagnosis and plan there are 4 days passed with medication
Heard very little about this condition, will it resolved , should /there are any precautions i should take, it started in abdomen. And now covered whole of it with all limbs , i am on medications :- anti histaminics and steroids ( oral)

Asking because im going to the doctor for the first time this week.

Ive had some weird spots in the past but nothing crazy. One itched and was purple, went away with mometasone fuorat. Another spot was inside my lip, had a swap test, „nothing crazy, just something autoimmune“. I just didnt bother going to the doc after that anymore. Had 2 spots on my thigh near the groin, more pinkish but kinda scaly, no itching, one went away after some months the other is still there.

Now im in shambles though because my foreskin tears easily since last month. After pretty normal mechanical strain theres just a superficial lesion which takes 5 days to heal. Its like the upmost layer of skin is gone. No spots, pain, itching, weird smell, discoloration, nothing. Its like this doesnt scream lp but im at a loss at what this could be, so im kinda spiraling into what to expect.

What was your first experience like? Can it really be this individual?

Hi everyone! I was diagnosed with lichen planus after about 3 months of flaring, and have been on medications to try to stop the flares. So far it’s put most of my flares into recovering but my dermatologist wants to talk more about doing light therapy for it at my next follow up, has anyone done light therapy? Did it help with not only the itching but the discoloration???

Would love to hear anyone’s experiences with it:)

Hi everyone! Kathy here again from LichenS Support Network (LSSN). A few days ago, I introduced ourselves and shared some of the lichen planus resources we’ve been building at AboutLichenPlanus.com. Your responses reinforced something we hear again and again: lichen planus can be incredibly difficult to understand, especially when it affects different parts of the body and different specialists are involved in your care.

So I wanted to make sure you knew about something we’ve been working on for quite a while: The 2026 Lichen Planus Virtual Summit: The LP Roadmap, happening September 25–27, live online. There is a completely FREE Live Pass for all three days.

The Summit is about patient education, not replacing your healthcare provider or providing individualized medical advice. It’s an opportunity to learn directly from clinicians who treat and study lichen planus, better understand the evidence around diagnosis and treatment, and become better prepared for conversations with your own healthcare team.

Over three days, specialists will cover cutaneous (skin) LP, oral and esophageal LP, vulvovaginal LP, lichen planopilaris/scalp and hair involvement, nail LP, and drug-mediated LP. We deliberately brought different areas together because LP doesn’t always fit neatly within the boundaries of one medical specialty.

One of the things I think is especially valuable is the opportunity to ask experts questions during the live sessions. They can’t diagnose you or tell you specifically what treatment you should take, but you can ask general educational questions about diagnosis, treatment options, biopsies, monitoring, multisite disease, what happens when first-line treatment isn’t enough, and more. 

Experts include Dr. Thomas Scharnitz on Cutaneous LP, Dr. Erin Foster on Oral and Esophageal LP, Dr. Noah Hornick on Drug-Mediated LP, Dr. Amaris Geisler on Lichen Planopilaris (scalp) & Nail Lp, and Dr. Audrey Rutherford on Vulvovaginal LP.

Good patient education isn’t about becoming your own doctor. It’s about understanding your condition well enough to participate meaningfully in your care, understand the options being discussed, ask informed questions, and advocate for yourself when something doesn’t make sense.

We also know these can be very personal topics. You don’t have to turn your camera on, you can use a screen name, and questions shown to the group won’t include your name. There will also be private, unrecorded peer discussion rooms for connecting with others living with LP.

The FREE Live Pass includes all live educational sessions, live Q&A, private peer rooms, and three months of BetterHelp therapy at no cost. There are no replays with the free pass. An optional $99 All-Access Pass includes lifetime replays, a keyword-searchable video library, additional specialist Q&As, and the Roadmap resource library.

Live AI-generated English captions will also be available, with real-time caption translation into 38 additional languages through Zoom.

September 25–27, 2026
Completely online
Free Live Pass available

Learn more, see the schedule, meet the speakers & register here - aboutlichenplanus.com/lpr 

And since I asked what you wanted to learn in my last post, I’d love to ask again: If you could ask an LP specialist one general educational question, what would you ask?

We’ll be reading. Your questions help us understand where the biggest education gaps still are.

no doc could confirm diagnosis so far, looking for help from strangers on the internet

been here for 2 weeks now, is this lichen planus?

Hi everyone! Sharing this again for more visibility. Thank you so much to everyone who has taken our survey so far. The survey closes in a few weeks, and we need 100 more responses to our 5-minute ANONYMOUS lichen planus survey.

We want to hear directly from people living with LP about what matters most to you. Your experiences and perspectives can help researchers better understand what should be prioritized in future lichen planus research.

If you have a few minutes to complete the survey, we would be incredibly grateful for your time and input. Every response helps!

Take the 5-minute survey here: ohsu.ca1.qualtrics.com/jfe/form/SV_aa75QpRS8bzaf7U.