Millions Of People Have HS — So Why Is It Still Often Overlooked?

Imagine living with a painful, unsightly skin condition that leaves lumps and scarring on your most intimate areas. You might not know what kind of medical help to look for — and when you do, it can feel too embarrassing to ask for it. Sometimes, even the practitioner can’t accurately identify the condition, leaving patients worse off over time.

This is the reality for many people suffering from hidradenitis suppurativa (HS), which reportedly affects up to 1% of the population. The inflammatory skin condition is not only a source of shame for people with HS, but a baseline lack of awareness and barriers to treatment options complicate the situation, leaving patients without answers for years. Ahead, some reasons why it is so often overlooked.

It Resembles Other, More Recognizable Skin Issues

“HS is a chronic, inflammatory skin condition that affects the areas of the body that are rich in apocrine (sweat) glands,” says Ariel Ostad, MD, a New York-based triple board-certified dermatologist and associate clinical professor at the NYU School of Medicine. Ostad says HS is most commonly found in the underarms, groin, buttocks, and under the breasts. “It presents as painful nodules, abscesses, and scarring,” he says. Because these symptoms can resemble more familiar skin issues, HS is frequently overlooked early on. The condition also forms draining sinus tracts, which are tunnels under the skin that connect the abscesses and release pus, and are extremely painful.

It Involves Clinical Recognition

Ostad says HS is driven by a combination of factors, including follicular occlusion (blocked hair follicles), immune system dysregulation, genetics — having a family history of HS increases risk — and hormonal influences. Women more commonly suffer from HS compared to men. You are typically also more susceptible if you smoke. A trained dermatologist can recognize and diagnose HS after a clinical examination. There’s no testing required to confirm an HS diagnosis, says Ostad.

However, because diagnosis relies on clinical recognition rather than a definitive test, missed or delayed diagnoses are common — especially among non-specialists.

HS Is Largely Misunderstood By The Masses

As mentioned, very often, symptoms of HS are mistaken for other common skin infections like acne, infected cysts, boils, or folliculitis. As a result, patients may normalize symptoms for years before seeking the proper care. “Some patients often present late, when the disease is more advanced,” he says, which makes treatment more complicated.

There is a common misconception that HS is caused by hygiene — but that’s simply not true. “HS is a medical disease, not a hygiene issue,” Ostad stresses. Since HS affects intimate areas, it also tends to go undiscussed. “Most patients are embarrassed or scared of being judged due to the location, such as the groin or buttocks,” he says. This stigma plays a major role in why the condition remains overlooked, even among those experiencing symptoms.

Even within the medical profession, awareness of HS remains limited. “It has historically been underrepresented in medical education and media,” he says. There’s a lack of familiarity with the disease among non-dermatology providers, so even if patients visit their primary care physicians for help, they might not be diagnosed correctly. Together, these gaps in knowledge — both public and clinical — contribute to HS being consistently overlooked despite its prevalence.

What Are The Dangers Of A Delayed Diagnosis?

Untreated, HS can lead to progressive scarring or permanent skin damage, chronic pain and drainage, and secondary infections. These outcomes are often preventable with earlier recognition and treatment — underscoring the cost of HS being overlooked. Ostad urges patients to seek care “if you are noticing consistent painful lumps in areas like the groin, underarms, and breasts, especially if they drain, leave scars, or keep coming back.” He suggests seeing a board-certified dermatologist for professional help with HS.

Although HS can feel isolating or shameful, remember you are not alone in dealing with it. Greater awareness — both among patients and providers — is key to changing how often this condition is missed. If you have symptoms of HS and want support, find a dermatologist in your area. Plus, here’s a list of questions to ask during your visit.

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