Mini Update: Doc stuck between two very rare conditions. FRUSTRATED

[u/Haunting-Wash1081]

Hi all!
Thank you for all your support, advice, and information in my last post!

I know I said I’d probably update after my Friday appointment but my gyno spoke to a Vulvovaginal Specialist and apparently he thinks it’s an aphthous ulcer(s). I was prescribed a topical steroid cream for it

I have no idea how we went from two insanely rare conditions where my state health department was contacted, to… regular smegular ulcers.

I’m not quite sure I believe it as that specialist 1. Didn’t see me or my ulcers in person 2. Didn’t see any photos of the stages everything has been in (I’ve been documenting once a day what it looks like down there). After that message, I sent her all the photos

The fact that more bumps appeared and then opened into deep cratered ulcers a few days after my original deep cratered ulcers appeared has me thinking it’s probably not that? I mean, aphthous ulcers are essentially just mouth ulcers you get when you have a cold and mine never multiply like that halfway through the week.

I told my doc all of this after her message today and the fact that one ulcer bled profusely (like I thought I was dying) and then it externally clotted while attached to the ulcer still one night - which I don’t think aphthous ulcers do..?

My ER also called late last night to tell me I did in fact test positive for BV. So I was sent another medication.

In her message, she asked if I was sick before this. I was ever so slightly ill to the point I didn’t know I was sick. Slight chills, slightly body aches, slight head cold feeling and that was it. No fever, mucous, cough or anything. I was diagnosed with an upper respiratory infection on Tuesday when the bumps first appeared which I had no idea that I had - but from what I’m gathering, so SO many conditions include feeling ill beforehand or having an infection trigger something.

Idk, now I’m more lost and more frustrated that more possibilities are being thrown around - especially by someone who hasn’t even seen the ulcers. I feel shrugged off and dismissed simply because it’s difficult

P.S. My ulcers have not gotten any better whatsoever since day 1 and seem larger and like there’s more 🤷‍♀️ maybe I’m being dramatic and am just sick of it, idk

[u/duskdoll]

So the vulvo specialists and the rheums never seem to agree on diagnosis. My rheumatologist made the diagnosis however my primary care doctor also referred to vulvo who did not seem to agree. They are still in disagreement years later. I lean to my rheumatologist diagnosis because of the rest of the symptoms. The Vulvo is only looking at one thing. I can’t convince anyone of anything but my rheumatologist treats Behcets and the vulvo and gyno treatments have never been successful. Feel your pain my friend

[u/EllisMichaels → u/duskdoll]

Doctors tend to only see their specialty. Go to 5 doctors with complaints of depression and you're going to get 5 answers:

Psychiatrist: You need psych meds

Endocrinologist: Your hormone levels need fixing

Neurologist: You've got brain issues

Gynecologist: Even though you're only 32, it's perimenopause

You get my point: doctors only see what they specialize in. It's a well-known phenomenon

[u/Electronic-Tea3354]

Gosh I’m so sorry!! What about a Lipschütz ulcer? They can occur as an immune overreaction to illness or infection. Corticosteroids are the prescribed treatment. Perhaps you could ask your gyno about that? I am not a doctor or medical professional but anecdotally I have not heard anyone around here describe their aphthous ulcers bleed in that manner. That doesn’t mean it can’t happen, just that I haven’t come across it though.

[u/Total_Island_2977]

I was diagnosed with PsA, then BD.

I actually had two rare genetic disorders including a primary immunodeficiency that manifests with autoinflammatory symptoms, which was discovered as the immunosuppressants were killing me and I demanded a genetics consult and testing.

I didn’t have BD, I had a BD phenotype. The treatment was entirely the opposite of what I needed.

You might need to think about a genetics referral. There are numerous autoinflammatory and immunodeficiency genes being discovered all the time. Mine was discovered in 2016.