r/Behcets

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.

Yep, like many others on here (I imagine), I have shingles. It’s around my right ear spreading down to my collar. Started with my ear hurting deep inside and then the bubbly rash. Luckily, I started valacyclovir just 48 hours after symptoms began so hopefully it won’t be that bad. No nuero symptoms yet so that’s good, but the right side of my neck is getting sore and tight. Fingers crossed for no crazy nuero or ear problems!

Does anyone else get skin bumps/acnelike rash behind their ears? They cause such a pressure on the skin and ears - I hate it :/

I can’t emphasize how much getting on Otezla has gotten me my life back. It’s like being on Revlimid* again before it stopped working; no ulcers, no stressing about ulcer pain. 7 months without a whisper of a flare.… and what did I find the last day of September.

I’m more frustrated than anything. I’ve just gotten myself a second part time job /pos and I’m going on a trip to see family. Why’d this have to happen now of all times. With the Simlandi and the Otezla, I’ve not had to think about how painful it is to sit somewhere, if my next period is gonna bring an ulcer with it, like-

I hate how powerful stress and anxiety is to our bodies (both in the sense that it burdens us while managing symptoms and flares, but also the fact that even with medication Behcets can still slip through the cracks.

*I don’t recommend Revlimid, there’s so many hoops to jump over to be on it, as well as it being a high risk med in the first place. This is just what my ped rheum originally prescribed after Colchicine didn’t work

Hi, all. I am recently diagnosed after 20 years of symptoms that doctors could not explain.

My rheumatologist started me on Colchicine 0.6 mg, which I’ve been taking since early July. My inflammatory markers are crazy high. I did some repeat lab work after about 6 weeks of the Colchicine (and also 6 weeks of going gluten free). My markers definitely improved but are still very high. I have a follow-up with rheumatology next week and am wondering if there are any specific medications I might ask her to consider.

I’ve had horrible flares of ulcers in the past, but the worst of my symptoms currently are crushing fatigue, widespread joint pain, and shortness of breath (could be related to Behcet’s or not… pulmonologist is doing more testing). I’ve also had a decent amount of blurry vision over the last year which new glasses did not fully resolve.

I know medication efficacy varies a lot from one person to another—just looking for anecdotal examples from folks with similar symptoms.