Mine seems to be caused by FRICTION on my skin.
It came up in my groin, only after certain sexual activity. I figured out it was from a rubbing in the same place more than once, from my loving husband's nose. I've learned to guard those spots with my fingers during that activity (that helps).
When terribly painful pustules are slowly, PAINFULLY forming, I dab on DMSO cream with a finger cot (I cut the fingers off vinyl med gloves), then gently cover with a nonstick pad. The DMSO cream needs to be applied on CLEAN skin, or it can cause an itchy reaction- DMSO is a carrier, meaning it gets thru the skin barrier & can bring other substances thru with it- I've never had a problem when applied to clean skin, no other cream or lotion.
It causes the painful pustules to open and drain WITHIN 2 DAYS.
I use JĀSÖN TEA TREE BODY WASH in the HS trouble spots in the shower; wet the trouble spots, apply the TT wash, then wash the rest of me with my usual cleanser- leave the HS spots for last to rinse.
After towel-drying, I stand in front of a small clip-on fan to dry the creases thoroughly.
Also, MORNING AND NIGHT, whether I have a breakout or NOT, I use SKYORGANICS WITCH HAZEL/TEA TREE FACIAL TONER in a spray bottle (yes, it's gentle and I use it on my face too) - either spritz directly on the HS trouble spots or spray on a cotton facial pad and pat gently onto the creases, then dry in front of the fan AGAIN. Must keep those spots dry.
That's my general program- I'm currently breakout-free, clear skin and nearly normal, healthy skintone.
Good luck.

Gosh, you've had a hard time of it, I'm sorry to hear that.
Tho I don't need anybody to "listen" and find me a solution, thanks- I've seen many, many people on here who've spent decades doing that and still are searching.
I'M OUTBREAK-FREE at present and use my Tea Tree Bodywash and Toner regularly (and avoiding SUGAR as much as possible. I use Stevia as a sweetening substitute where possible (with NO erythritol; new studies show that it can make the blood "sticky", contributing to blood clots, heart and stroke issues!)).

Those topicals seem to keep my skin intact and healthy without Rx meds.
Why treat the whole system when it is only specific limited areas that need help, and the natural skin care that I practice does no harm and works for me? My experienced internist MD agrees- if it ain't broke, don't "fix" it. He's glad I'm whole, no matter who found my solutions. He can admit that Rx meds are not always the only answer.
I only want other people too, to be as comfortable in their skin as they can be. If my story helps some, I'm happy.

I'm not currently looking, but I wish good luck in your continuing search.
Be healthy. 💐

There's a lot of wisdom in you tary ,I'm so glad you're in this group, I tried tea tree oil and i probably left it on to long, I was told it clogged my pores ,and I didn't get that from any experts, but I need to check it out, right now I'm having a flare but I've only been in remission once, I get acne vulgaris sl I always have pimples everywhere, I don't have much to fight this with, it has to be a team effort, and my last dermatologist felt the only thing left to try was humira . Thanks so much for your help, it's good information,.🤗

I probably just lost the genetic lottery. My mum has some other autoimmune skin conditions. I just got to have HS instead of alopecia or psoriasis or eczema.

I believe your story. People aren't right. I'm going to try doxycycline again and see if it gets me in remission. I'm physically a wreak but emotionally I couldn't be better. Thanks for asking!
And thank you for sharing your story.