Unfortunately, that’s a common scenario, according to Dr. Mayo. “Pain is usually what causes people to seek care,” she says. “And they often go to the emergency department.” But while ER staff can temporarily solve the problem, the underlying reason often goes undiagnosed—even when people follow up with their primary care doctor. “Many people just aren’t aware that HS exists,” Dr. Mayo says. “And it’s not only patients, but doctors too.”
A 2020 study published in Dermatology drives that point home: Among nearly 400 people with HS, the average time from first symptoms to a correct diagnosis was 10 years, and people typically faced three misdiagnoses, including abscesses, acne, and ingrown hairs. Docs can take even longer to pick up on it in people of color. One 2022 study found that Black people had about five years from symptoms to diagnosis compared with three years for those who were white.
Is it HS or something else?
If even the pros get it wrong, how can you tell when your skin symptoms might be HS? Some basic awareness can go a long way, Lisa Akintilo, MD, an assistant professor of dermatology at NYU Grossman School of Medicine, tells SELF. It’s critical to have it correctly identified—and definitely okay to question explanations you’ve gotten in the past, Dr. Akintilo says. “I think HS is very much underdiagnosed,” she says. “There are a lot of great treatments now, but we need to get people diagnosed first.”
Here are a few conditions that are commonly confused with HS and some ways to tell the difference:
Acne: It’s logical to assume that a tender bump under your skin is a pimple, the experts say—especially since HS often arises in the teenage years. And cystic acne, with its painful lumps that may ooze pus and leave behind scars, can be particularly HS-like, Dr. Akintilo says.
But as Wojcik’s experience shows, where it shows up on your body is a big clue. “The sites of HS tend to be atypical for acne,” Dr. Akintilo says. Acne (including cystic) typically appears in places where you have a lot of oil glands, like the face, chest, back, and shoulders. HS only rarely affects the face. If your symptoms are in the underarms, groin, or other areas of skin friction, that’s a sign “you’re not dealing with acne,” per the AAD.
Folliculitis: In one of the studies we mentioned earlier, HS was commonly misdiagnosed as an infection that develops in hair follicles. And yes, mild HS can look similar, Angad Chadha, MD, a dermatologist and assistant professor at the University of Chicago Medicine, tells SELF. While folliculitis bumps can strike almost anywhere on the body, Dr. Chadha says they are usually more “superficial” than HS. And if it’s just an infection, he says, it may be a one-time problem or be solved if you can remove the underlying cause (whatever is damaging the hair follicles and letting germs in).
