If you’re living with vulvar Crohn’s disease, you’re not alone. Most people, even some doctors, might not understand it, but I do.
When people talk about Crohn’s disease, they picture stomach pain, bathroom emergencies, and gut inflammation. But no one prepared me for what it’s like when Crohn’s hits down there, in the most private, most painful, and most misunderstood part of your body.
I’m talking about vulvar Crohn’s disease, and if you’ve never heard of it, you’re not alone. Most doctors barely mention it unless you push. I had to beg to be taken seriously. And if you’re reading this right now because you’re searching for answers to pain, swelling, or mystery “infections” that don’t go away. You’re not crazy. You’re not overreacting. You just might have a rare manifestation of Crohn’s that nobody talks about.
What is Vulvar Crohn’s Disease?
Vulvar Crohn’s is an extraintestinal form of the disease, which means it shows up outside the gut. And in this case? It shows up as:
- Painful swelling of the labia (sometimes one side, sometimes both)
- Knife-like fissures or ulcers
- Abscesses that fill and refill
- Skin that feels like it’s on fire or itchy and raw.
And the wildest part? Sometimes it shows up with no digestive symptoms at all. That’s called metastatic Crohn’s, and it’s exactly why diagnosis takes forever.
Vulvar Crohn’s, My Experience: From Confused to Diagnosed
At first, I thought it was a yeast infection. Then maybe a UTI. Or maybe I was just sensitive. I tried every over-the-counter cream, sat in lukewarm baths, and switched to unscented everything. But the pain didn’t go away.
The swelling would come and go. Some days I felt almost normal, and other days, walking was unbearable. Intimacy wasn’t exactly easy, although not impossible.
During a routine GI appointment, I brought it up. My doctor referred me to a dermatologist, who sent me to a gynecologist, and then I ended up right back with my GI. It felt like I was being passed around without anyone really knowing what to do.
Each new doctor insisted on running STD tests. I explained that I’ve been married for over 20 years and knew that wasn’t a concern, but I went along with it because I wanted answers. Once the results came back negative, we were finally able to start looking in the right direction.
Eventually, they confirmed it: non-caseating granulomas consistent with Crohn’s disease of the vulva.
Why It’s So Often Missed
Vulvar Crohn’s disease looks a lot like other conditions: herpes, bacterial infections, eczema, cellulitis. It’s no wonder so many of us are misdiagnosed, dismissed, or told it’s “just irritation.”
The key? Ask for a biopsy. If you have a history of Crohn’s, or even if you don’t and are dealing with vulvar pain that won’t go away, push for answers.
How to Manage
Let me be clear: this isn’t easy. While there is no known cure, vulvar Crohn’s is manageable with the right care.
Here’s what’s helps others with vulvar Crohn’s:
- Topical steroids – when you feel a flare starting corticosteroids can help
- Biologic therapy – there are a variety of these treatments available
- Warm sitz baths – daily, sometimes twice
- Loose, breathable cotton underwear – (anything tight = nope)
- Heating pads and warm compress– This can help with pain and swelling
- Fragrance-free everything
- Lidocaine for pain, especially when you need to function or sleep during a flare up
Let’s Talk About the Mental Side
The physical pain is bad enough. But the mental load of vulvar Crohn’s? It’s isolating.
It’s hard to talk about. You feel broken, like your body betrayed you yet again.
But here’s what I’ve learned: there is no shame in this. You are still whole. You are still strong. And you are not alone even though it feels like nobody gets it. I’ve been there and trust me, I get it.
It sucks but don’t give up.
If You’re Struggling with Vulvar Pain + Crohn’s
Here’s what I wish someone told me sooner:
- You’re not imagining this.
- It’s not just a rash.
- There is a name for it.
- And there are treatments that help.
Talk to your GI. Ask for a biopsy. Connect with a gynecologist who understands IBD. Join a support group, even if it’s just one person who gets it. You deserve care that acknowledges your whole body, not just your digestive tract.
This blog post isn’t about scaring anyone, it’s about empowering us. Vulvar Crohn’s is rare, but real. And with the right care, you can find relief, support, and a path forward.
If you’re living this right now, I want to hear from you. Share your story, drop a comment, send a message, whatever you need to feel less alone.
You’re not invisible. You’re not broken. You’re fighting something hard and doing it with more strength than most people will ever understand.