u/aL-aL-alisonburger

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.

Hi! I’m hoping to get everyone’s opinion because I’ve been dealing with what seems like an environmental arthropod problem for several years, and despite multiple pest control visits and doctor appointments, no one has been able to identify the cause.

It started in San Francisco while I was living on the top floor of a house with a flat roof. We had a mouse infestation, and my downstairs roommates had bird feeders (it’s possible there were bird nests on the roof above my room). Around that time I developed intense pinprick/stinging sensations, especially at night or when I got hot, along with tiny itchy red bumps. We fogged multiple times, and things only improved after removing the carpets (I had layered rugs on top of built-in carpet). I also had to have my car fogged because the problem spread there. I found adult carpet beetles multiple times in that house and once saw what looked like a tiny bug, but nothing was ever identified. We did find a few beetles in the house and a bug that the pest control company said they couldn’t identify. Also, at my house in San Francisco, I was the only one out of 5 people who was getting what looked like bites (see pictures).

After moving to San Diego and unpacking items from storage, the exact same symptoms returned. Freshly washed sheets and pajamas feel better at first, but within 2–4 days they become unbearably itchy again. The couch also gradually becomes unbearable to sit on. Heat makes everything much worse, and I often wake up at night with pinprick sensations and new tiny red bumps. Two doctors thought it could be mites, but no species was ever confirmed. My sister and dad also developed itching and bumps, and my sister even had a small patch of hives. I’ve also found adult carpet beetles several times in my current home, including multiple over the last few days, and glue traps have caught tiny brown insects (possibly booklice, springtails, or another storage pest). I’m not convinced carpet beetles alone explain the recurring “recontamination” of bedding or the nighttime symptoms. Based on this history, what would you consider the most likely cause, and is there a particular mite or storage-associated pest I should investigate?

I’m just looking for answers, as getting fogged helps but seamingly only for a little bit of time and this has been going on for years without knowing the cause and how to treat. It’s exhausting.

3 biopsies negative for lichen, chronic vulvar pain + ulcers/tearing + mouth inflammation — I’m running out of answers

Help identifying pest problem