Hello everyone, 

This is my story, sorry for the novel.
I am a 32 year old female who has been suffering with HS since my early 20s. 

My HS began with blind pimples on my buttock, groin, armpits and inner thigh areas. Usually these smaller lumps would either dissolve or burst (Like blind pimples). I always just assumed it was ingrown hairs or something of that nature. 
I have been using a contraceptive pill "Yasmin” for the last 15 years, and had IPL hair removal in both arm pits and extended Brazilian (so no hair down there)

In 2013 I decided to come off Yasmin and have a break. approx. 3mths after I stop taking Yasmin I developed a sore pimple on the inner buttock cheek, this developed over night and within 48hrs I found myself in a world of pain taking myself off to ED.
By this stage it had developed in to an abscess.  The surgeon decided to operate, to drain the abscess.
The surgery gave me some relief, but within a few weeks the abscess had formed again, and I was back in Emergency. 
Unfortunately for me, just as the area would heal from surgery, it would start developing again. It seemed to occur every 3-4 weeks.
After a few operations where they drained the area, the abscess eventually developed in to a perianal fistula.
My surgeon then decided to insert a seton so the area would drain and heal.
Meanwhile I was taking Augmentin Duo Forte to control the "infected" area, as well as getting tests for crohns, diabetes, almost everything under the sun.
All these test came back negative, the fluid and tissue from the abscess always came back sterile with no bacteria present. The fluid looked like puss and blood, but never smelt bad. So this is another reason why the doctors were so confused. It was like my body was reacting to an infection or bacteria that wasn’t there.
After a few attempts at the seton my surgeon wanted to try a collagen plug, hoping this would heal the area. 
This was probably the WORST decision we made. Within 48hrs I was in incredible amounts of pain (like I’m talking delirious, overwhelming, nauseating amounts of pain).
Where the surgeon had inserted the plug was extremely red, swollen, inflamed and bleeding a lot! 
I went back to see my surgeon and I had an emergency procedure to remove the plug.
After the plug was removed, a sinus developed, that went from my buttock cheek to my rectum. Which meant when I went to the toilet it would expel out the sinus tract also.
This was it for me. I was so scared, shocked, depressed, the doctors had to sedate me in hospital, I was inconsolable. 
Luckily the inner opening to my rectum healed quickly.
But of course within 3-4 wks of removing the collagen plug, it developed in to another abscess.

This time my surgeon referred me on to another surgeon, because he didn’t know what else to do.
My new surgeon decided to cut open the sinus tract, clean the area, lay it out, and pack the area with kaltostat (seaweed packing for deep wounds) so it could heal from inside out.
Within 3 weeks of having nurses pack my wound, it finally healed, and to this day, it hasn’t come back (touch wood).

So within the 12months I had 10 operations on the abscess, a colonoscopy, numerous blood tests, and CT scans.

I went to see a dermatologist and he confirmed my fears of HS, and advised me to start taking Yasmin again immediately, and not to come off, even for sugar pills.
I don’t think Ive had a period now for 2-3 years, which also worries me. How on earth can I ever have children with this condition?!

Last year I had an abscess deveop on my tail bone, which I had surgery on. They did the same, laid it open and I had a nurse use keltostat packing, daily. Took 2-3 weeks to heal, hasnt come back so far (touch wood).

In January this year, I developed another abscess in my left Axilla (armpit). Luckily my Mum is a nurse and I had stacks of endone and tramadol left from my previous surgeries.
Every 3-4 weeks I would take a bunch of these pain killers, and have Mum lance and drain the abscess. There is only one sinus tract that I can see on the surface. It has been 6 months now. 
I have just recently seen a plastic surgeon for surgery on this area.
As I am terrified of it becoming a network of sinus tracts and even harder to treat with surgery. Also because I cannot mentally keep going like this without having some kind of break down!
The plastic surgeon like most doctors didn’t have much experience with HS, and seemed to think it was a staph infection more than anything. When I told him that previous abscess had been tested and came back sterile and no bacteria, he dismissed it saying they must have made a mistake in the lab. How they stuff up 10 different lab samples is beyond me.
Anyway the surgeon wants to operate on Tuesday next week. He says he is going to open the sinus tract and lay it open. He also wants to remove my sweat glands and cut away the infected tissue area.
This is scaring me. I’m terrified I will be back where I started 3 years ago, having 10 operations for some kind of relief.

Has anyone had this surgery?

Has anyone had the sweat glands removed?
Were there any complications and what was your recovery like.

Also, is it worth getting tested for lupus? I feel like I have some of the symtoms, and thinking maybe the conditions are related in some way.

Thank you so much for taking the time to read my story.
If you’ve had a similar experience or have had any procedure like this one I would love to hear from you.