What Is Hidradenitis Suppurativa, and Why Is It So Hard to Diagnose?

Dealing with skin conditions like acne or psoriasis can be hard enough when you know what you’re working with. But some maladies come with the additional challenge of a tricky diagnosis process to begin with, potentially sending you on a wild goose chase of treating inconsequential symptoms or, even worse, a misdiagnosis that only makes matters worse.

Hidradenitis suppurativa is one such condition. A chronic, autoinflammatory skin disease, it borrows symptoms from a range of other common skin issues. It’s typically found in areas where skin folds onto itself, such as the armpits or groin, and symptoms can include boils, abscesses, drainage, and even scarring. And the longer it runs untreated, the worse it can get, making life increasingly uncomfortable and awkward for the afflicted.

Similar to acne, hidradenitis suppurativa initiates at the hair follicle. Except, unlike acne, which tends to express outward, much of hidradenitis suppurativa’s activity happens beneath the skin—which makes sense, given the condition’s alias: acne inversa (as in, inverted acne). “It's not just the follicle, but also the associated sweat gland. And those glands are what allow this larger, deeper, more inflammatory process.,” says Nicole Lee, MD, MPH, FAAD, board-certified dermatologist and owner of Epoch Dermatology.

“Oftentimes, people will come in with recurring abscesses or infection. You’ll treat them, and yet they keep getting recurrences of it in specific areas. That triggers you to think that this is more than just an isolated event,” says Dr. Lee.

While there’s some data to suggest the cause of hidradenitis suppurativa could be linked with variables like increased visceral fat and smoking, dermatologists told GQ that it is most likely genetic, with these environmental factors simply helping to stimulate the condition’s progression.

“Most importantly, and I really emphasize this to patients, is that this is not hygiene related,” says Gibran Shaikh, MD, board-certified dermatologist and clinical instructor in the Department of Dermatology at Mount Sinai. “A lot of times, people go to the emergency department and they're told, ‘Oh you have a boil, you need to wash yourself or shower more.’ This is not that.”

Turns out, misdiagnoses are pretty common in cases of hidradenitis suppurativa. Here’s why.

It shares some of the same symptoms as other common skin conditions

One of the most frequent complications in diagnosing hidradenitis suppurativa is that it gets mistaken for other conditions. Up until the point of eventual scarring, the condition’s unequivocal calling card, it presents mostly as a collection of symptoms that may not even appear to be related to one another.

“A lot of patients are told that they have a recurrent staph infection,” says Dr. Shaikh. “Another thing that it can be confused with is folliculitis. And again, patients are told, ‘Look, you need to clean yourself better, you need to shower more.’ I've had patients come in who are showering two or three times a day. They're rubbing their skin raw because they've been convinced that they're not cleaning themselves correctly.”

To be clear, dermatologists can and will more than likely get it right, but the problem is that a lot of people tend to go instead to their primary doctor or local urgent care, who lack the specialized expertise to pick up on the condition’s nuances.

“No one else in medicine can really make this diagnosis, because they're not trained to,” says Dr. Shaikh, who notes that an initial misdiagnosis can create an anchoring bias that only serves to waste time and allow the condition to get worse. “You’re told you have an abscess, or you have folliculitis, or you have really bad acne, and then at that point hidradenitis suppurativa is not even on your radar.”

It can only be diagnosed in a doctor’s office

In a perfect world, when you notice something weird going on with your body, your first instinct is to see a specialist. Or maybe, if your insurance requires it, you go to your primary care provider first, because you need an in-person referral in order to get coverage. In reality, however, more often than not we all start at the same place: Google.

In the case of hidradenitis suppurativa, due to the uncomfortable and often socially awkward nature of the condition’s symptoms, there’s an especially strong tendency for people to privately seek solutions on their own, such as over-the-counter remedies or even DIY hacks. “The social impact and embarrassment is one of the hardest things for patients,” says Dr. Lee. “These nodules and boils are constantly draining, so you're like bleeding through your clothes, it can smell very badly, and imagine having these extremely swollen painful boils where you can't put your arm down, or you can't wear your underwear.”

Unfortunately, the internet will only get you so far—which is to say, not far at all—in diagnosing hidradenitis suppurativa, because you really do need to see a doctor who can put the pieces together. “It's entirely a clinical diagnosis,” says Dr. Shaikh. “It's entirely based on the physical exam that we do as a dermatologist, and the history that we take on the patient based on their description of what's happened in the months or years prior.”

It can take years to reveal itself

Hidradenitis suppurativa, compared with other skin conditions, has one of the longest diagnosis latency times—in other words, the time from when a person first starts presenting symptoms to the time they wind up with a formal diagnosis. Oftentimes, it’s several years.

One reason for this is that hidradenitis suppurativa is not always clearly discernible to the naked eye. “Much or all of the disease is going on underneath the surface of the skin,” says Dr. Shaikh. “So you may feel it before you see it. It's less readily apparent than other skin diseases.”

Another factor in delayed diagnoses is that symptoms can show up weeks, months, or even years apart, making it virtually impossible to put two and two together until much later. “The chronology of the disease is highly variable,” says Dr. Shaikh. “You might be like, ‘Oh, I had this thing under my arm for a few weeks, like three years ago, and then it kind of went away, and then recently I got a spot just popping up in my groin, and that lasted a week.’ And so people may not realize that they're even related to each other.”

The best thing you can do is to remain vigilant about noting changes in your body and bringing any concerns to a dermatologist as soon as possible. “Don't be afraid to go see an expert,” says Dr. Lee. “It's okay. Realize that you are not the only one, and there are things that can be done.”