Listen, I do not care what the "written" words that someone wrote that hasn't even had it. Or a scientist, doctor or professionals say, because NO ONE knows except us, that actually suffer through it. Even dermatologistd haven't a clue, unless they specifically researched it. I've had it for 41 years. No one knew what it was until about 10/15 years ago. I was told I had poison in my blood, I shouldnt eat chocolate, cystical acne. You name It I've been told it. Ive tried every treatment out there except laser surgery. Nothing works. Mine is hormonal. My oldest daughter has hormonal HS also. But my youngest daughter (hasn't been diagnosed yet) has a weird kind of it.
But, I've had it in my face two times both pregnancies. My daughter (the youngest) had had it on her face and neck and hairlines also. I think a few months ago I had it in my mouth. Weird I know. But I had several flares, one big bad one, a couple small ones and my mouth was swollen in my gums in one spot really bad. I think it was HS. Which is so weird as we do not have hairs in our mouth.
So, I guarantee it is HS in your nose, hairlines, ears, etc.... I agree you need to find a dermatologist that knows at least a little about HS. Good luck and let us know!!

HS can affect anywhere there are hair follicles, so it is possible to have it on your neck, along your hairline, your back, your face etc. It shouldn't show up internally in your throat. I'm not sure about inside the nose though-there are hairs, but they're in a mucus membrane and not near apocrine sweat glands, so it's different than the hair on your skin. But HS is an autoinflammatory disorder, so you if you're having symptoms that aren't HS, they might be another inflammatory or autoimmune disease that's able to flourish because of the systemic inflammation in the body.

I'd recommend trying to find a dermatologist that's knowledgeable about HS, because a lot of general practitioners know very little about it.

Thank you so much for responding to my post. It makes me feel like I'm not so crazy or so misunderstood. I believe you about the mouth thing, I get it in the corners of my both and even in my lips sometimes too. It's almost like beginning to disfigure my face end change the way I look almost. Like it's creating these creases from the outer corners of my mouth to my jawline, almost like jowls..I hate this stuff.