I had surgery about two weeks ago to help lessen my flare ups from my autoimmune disease, Hidradenitis Supprativa. The disease causes painful boils or cysts to form in various area of the body. It’s different for everyone who has it.

My HS is severe and was becoming annoying and painful to keep up with on a daily basis. I’ve seen people online say how surgery helps them. I’ve seen doctors talk about how some wounds won’t heal completely because of the tunneling they create. My rhumertologist and dermatologist were suggesting surgery or rumicade, which is technically a cancer drug where you’d get infusions. With the price of rumicade and each session, it just made the most sense for me to get surgery.

What I didn’t say in the previous post, is that I’m expected to have about 5 or 6 surgeries because they only operate on one area at a time. Operating on too many areas at once will make it harder to heal and harder to live comfortably. It’s also not realistic during a surgery to be able to move your body to showcase the different areas.

I went in for the surgery at seven in the morning and got the same medication they gave me for the c-section, which made me unable to use my legs.

I was nervous as hell, especially since I wasn’t expecting to stay awake during. I don’t remember the surgery at all, past the first couple of shots I got in my back. It just felt like I was falling and I didn’t know what I was seeing. I remember crying from nerves. I think they put me to sleep at some point. Either that or the anesthesiologist really pumped me with drugs. He said he would make sure I was comfortable and overall I must’ve been since I don’t remember much except being face down.

At some point, I came to a little, shocked that the surgery happened because I felt numb and time moved so fast. I had to pee and get my bandages changed before they let me go home. I sat on a donut pillow in the car to ease the pressure because I got the first surgery on my buttocks.

The first couple of days after getting back from the hospital I slept, woke up and fell back to sleep. Once all the medications from the hospital wore off and I got used to the pain pills, I stayed up more.

The pain was hard to deal with at first. The area was throbbing a lot. The pain pills helped. Now, a little after two weeks, the pain feels more itchy. There’s some discomfort here and there, but I’m at the point where I’m only taking medication for the wounds changes.

I have four open incisions that have wet guaze in them. Twice a day, they have to be taken out and new wet guaze has to be put in. In the beginning it was very painful. Now it’s just uncomfortable. Sometimes, it hurts in between changes. Sometimes, they’re itchy and I can’t scratch obviously, so not only is it painful it’s annoying.

Luckily, I am mobile. I can get up and go to the bathroom and shower without assistance. I can walk around. However, I spend majority of my time lying down on my side or stomach because I can’t/don’t want to sit and put too much pressure on the incisions.

In the beginning, my temperature spiked a lot, but I haven’t had a fever in a while. On top of this surgery, I still have to deal with the other active HS wounds I have. I’m on antibiotics, still taking humira, and have pain medication, so that pain hasn’t been too severe, as long as I take pain medication before changes. I recently went to my post op with my doctor and I mistakenly didn’t take them before. After sitting in the car for about an hour and a half she did a wound change and it hurt so bad I was crying on the way home.

I’m supposed to have another surgery in the next couple of weeks. I really want to get as much of this disease taken out while I have my family to take care of daughter and while I’m still 25 and on health insurance.

I know people go back and forth about having surgery for HS, but a nurse explained what I couldn’t put into words. Even though right now I’m dealing with the wounds, I feel less pressure in that area than I did before. HS ducts, tunnels, and wounds cause a constant pressure in the area they form, even if it doesn’t exactly hurt. The surgery helped provide relief in that sense and even though the HS could come back, I will appreciate this feeling as long as I can.

Surgery recovery is always hard. It’s hard not being independent and not spending as much time with my daughter as I’m used to. Sometimes I feel like I’m not doing enough in general. It’s also an isolating experience. I am getting restless and want this all to be over. I’ve cried a lot and my emotions are on a rollercoaster. At the same time, I am privileged and feel really lucky to be able to have the surgery and to have the support I do during this time. I made this decision in the hopes for a less painful future, so I’m just taking it one day at a time.