TW: surgery, wounds, skin graft, and medical discussions

For those who don’t know, I have Hidradenitis Supperativa (HS). In summer 2023, I had my first surgery to take out some of the diseased area. In the beginning of 2024, I found out I was severely septic. In September 2024, I went back to the hospital and was sent away without being seen for a new spot showing up that was presenting differently.

Now, with an HS specialist, I learned that the spot was actually tunnels that were missed during the surgery I had when I was septic. The tunnels surfaced to the skin and the only thing I could do was have another surgery to remove them.

I originally referred to this on Instagram stories as a deroofing surgery, but reading my notes posted by the doctor, I don’t know if it was a deroofing or excision, or a combination of the two.

Disclaimer: This is my experience with my medical team. You and your medical team may have a different experience or plan of action and it is best to direct specific questions and concerns to your team, as I can only give insights into what I’ve experienced.

I’m sharing for anyone with HS who has this as an option for treatment, or who has gone through it before, or will soon. I’m also sharing to educate anyone reading on what life with HS CAN look like. It’s not the same for everyone and HS has different stages of severity. (Mine is stage 3).

For the surgery, I had to be awake. I came into the office like it was an office visit, but was led back to the rooms where procedures occur for outpatient care. After going through the things, the dermatologist looked at my wound site, under my arm, again, which had more outward facing wounds than my initial consultation.

I took an anxiety pill they prescribed because I needed it, especially with the medical trauma I have.

He offered to do a skin graft from my thigh to place over the wound because my range of motion is pretty bad after having stitches from my hospital stay. It’s recommended for HS not to have stitches and instead let it close naturally apparently. He told me that a skin graft would be very painful, but it would allow me to keep more of my range of motion if everything goes well. I opted for it and we started.

He came in and gave me shots, one was for antibiotics, the others were for numbing. I went through a lot of numbing agent, but I am sensitive to most things, including pain, so that’s pretty on brand for me.

He put on music for me. I chose Raye. Let me just say that Buss it Down is an unserious song and awkward to listen to in a room where people are operating on you. But anyway, the numbing shots hurt until you’re numb and can’t feel it.

Originally, it was supposed to be an hour long surgery, but with the introduction of the skin graft and some technical difficulties with the numbing agent, (popping the bag and having to remake it) it turned into a 3 to 4 hour procedure, where I was mainly waiting around. Maybe two hours of that I was actually being worked on, including being numbed.

Once numb, it feels like tugging. I heard the scissors snapping, felt the motions of the scalpel, but it didn’t hurt when they operated. I didn’t look at them or what they were doing. It was an out of body experience for me that I needed not to think about too much.

After sewing in a bolster to apply pressure, and wrapping me in ace bandages, I was discharged and was due back in four days to get the bolster off my thigh. I talked about that experience of my Instagram stories. My next visit is today to get bolster off my arm.

The pain so far has been a lot. The skin graft donor site burns. There’s pressure under my arm from being wrapped. It hurts, not gonna lie. The doctor told me it would, but I didn’t imagine the skin graft site hurting as much as it did.

As of Jan 16th, a week from the procedure, the pain has gotten a little easier, though some days are better than others. My arm doesn’t hurt much, if at all. The pain is coming from my skin graft site because the more shallow a wound, the more it hurts because of that is where your nerves are.

I think about being able to move my arm and hopefully, not have to worry about HS pain there again and it’ll be worth it.