Jessica Butler, 29, was diagnosed with hidradenitis suppurativa (HS), a chronic disease that causes boil-like lumps to form under the skin, when she was a teenager. Her symptoms were pretty challenging—a series of painful nodules that needed to be lanced and drained. But when she got pregnant in 2020, it got so much worse. She developed more nodules around her breasts, armpit, groin, and thighs. The bumps were debilitating, and eventually things got so bad she had to stop breastfeeding. Here’s her story, as told to health writer Julia Ries.
I was in the seventh grade when a penny-size bump formed between my breasts. My pediatrician thought it was cystic acne and put me on medication for a couple years. That helped my regular acne, but it did not improve the bump. By the time I was a freshman in high school, I went to a dermatologist who examined my skin and immediately knew what was going on. She was like, “This is HS.” I was excited because I finally had a name for the bump I’d had for two years.
Throughout high school, my HS was pretty mild—I just had that one bump on my chest. I experimented with treatments: I received steroid injections—sometimes they helped, other times they made it worse. I even had the bump surgically removed from my chest. About six months later, however, a bunch of new bumps popped up on the skin between my breasts, as well as on my armpits, groin, and thighs. It was like the HS kept finding new places to grow. They became so painful, causing this incredible pressure that felt like my skin was slowly ripping apart. Over the next few years, whenever I got new bumps, my dermatologist would either lance them and pack the wound with gauze or administer steroid injections.
It was frustrating to continuously have bumps appear and then need to have them removed—but it was about to get a lot worse. During the pandemic I got pregnant for the first time and my HS started raging. I had flare-ups everywhere—but it was really, really bad around my breasts. Because I was pregnant, I could no longer get the steroid injections, so I just had to naturally let these bumps happen. Since everything was shut down, I couldn’t see my doctor, so I went to the ER a couple of times to have the lesions cut and drained. During one particularly bad episode, a lump was pressing on my milk ducts, which gave me mastitis. [Editor’s note: Mastitis is inflammation of the breast tissue, which can be caused by a clogged milk duct.] It was so painful. Being pregnant and dealing with HS at the same time was just too much on my body. But luckily, it was during COVID—I was a high school cheerleading coach, so didn’t have to work and could stay in bed all day.
A few months after I gave birth to my daughter, I got my period again, and with it, a really awful spot on my breast—which made nursing so painful. At times, it was hard to even pick my baby up, and eventually I had to stop breastfeeding, which was a devastating decision for me. I felt like a failure because all I wanted to do was provide for my baby, but my body wouldn’t let me. I have an amazing support system at home that helped me out a lot, but that was definitely a low point. I continued to get flare-ups throughout the postpartum period, and because I couldn’t get appointments with my dermatologist, I would just let the boils run their course where they would grow, burst, and heal.
Then I got pregnant with my son in February of 2023. I was so worried my HS would flare up again, but I was also a little hopeful that if I did have issues, I could at least see my dermatologist in person (unlike during COVID) to get treated. I was so concerned about what my postpartum would look like. I wanted to be able to nurse longer. I wanted it to be different.
Though I ended up having no symptoms during pregnancy, I got a massive flare-up about four months postpartum—right around when I got my period again. I developed a bump on the inside of my right breast that, within three weeks, grew to the size of a softball. It was huge, and the skin turned black and blue. I had to pump around the clock, like every 30 minutes, just to relieve the pressure it was putting on my milk ducts. Again, I couldn’t get in with my dermatologist. That’s another thing I’ve found: You get a flare-up and want immediate help, but you can’t get an appointment because there’s no availability—and so the bumps just grow and burst. Eventually I had to stop breastfeeding my son as well because it was too painful. I felt disappointed in my body for constantly doing this to me, sad because I couldn’t nurse or provide for our son, and overall defeated about not being able to do this with both of our children.
When my son was about eight months old, I got this terrible spot in my armpit. I had just gotten over an awful flare-up and now I had a new one and was feeling so hopeless. So I decided to post a video about it to my TikTok to see if anyone had similar experiences. It blew up overnight—so many people shared their experiences with HS and tips that worked for them. That’s when I started trying everything these people recommended because I was so desperate for relief.
I’m currently 11 months postpartum, and I still get horrible flare-ups. I don’t know if that’s because I just had a baby, or if that’s how things will continue to be. Doctors don’t fully know what causes HS—they say there are hormonal, environmental, and genetic factors at play, and it’s often misdiagnosed. My dad has HS, though not severe at all, so I know it’s somewhat genetic for me—but my dermatologist said my HS is related to my hormones too.
Looking back, I didn’t think I’d want another baby after what I went through with my daughter—but I did it. HS can definitely be debilitating, but if you have the right resources, you can get through it. That’s the biggest thing I’ve learned: You can keep going.
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