It Usually Takes Women Years To Learn They Have HS. Here’s Why.

In order to receive a diagnosis of hidradenitis suppurativa (HS), it’s not always as simple as noticing a boil and scheduling a dermatology appointment. For many people, the process can take nearly a decade. A physician needs to know the abrasion is recurrent, meaning the boil needs to have appeared, disappeared, and then reappeared like a persistent, unwelcome houseguest. It’s a frustrating and painful pattern, known far too well by women with the chronic skin condition.

Women in North America are three times more likely than men to have HS, making it similar to many issues that primarily affect women in that it’s underdiscussed and yet entirely overwhelming. A 2025 report estimated that roughly 1% of the global population has the skin condition, and while that’s similar to the rate of rheumatoid arthritis, many people have never heard of HS.

The disease begins when hair follicles are blocked, which triggers a response from the immune system, often resulting in boil-like bumps in places such as armpits, inner thighs, groins, and underneath breasts. The abrasions can be triggered by friction, trapped sweat, and moisture retention, making them difficult to avoid, especially for mothers of young children.

“It happens to women who are adults, showing up around when we start having our periods,” says Dr. Kendra Bergstrom, a board-certified dermatologist at the University of Washington. “[For mothers who] have hidradenitis suppurativa, if they’re going to have another pregnancy, you're a little more likely to have gestational diabetes, more likely to have preeclampsia, and as a result, a lot more likely to have a C-section.”

It commonly takes seven to10 years to receive an HS diagnosis, and the cost of that delay is high. “Once it's been untreated for a long time, it's really hard to get those boils back [under control]. The skin's not going to be normal skin, unfortunately,” says Bergstrom, referring to the possibility of severe scarring and inflamed tunnels under the skin.

As for why it takes so long, recent research points to a slew of interconnected factors.

1. Its Resemblance To Other Skin Conditions

For many people, HS crops up in the teenage years or early adulthood, when a red bump is more likely to be acne, an ingrown hair from shaving, or a symptom of an STI. Characteristically, HS boils disappear — if only temporarily — furthering the idea that it’s nothing to worry about.

When people recognize they need a physician’s help, they often don’t know where to start, especially if boils are located in the groin area. “They might say, ‘I'll see my primary [care physician or] gynecologist or I’ll just see urgent care.’ And urgent care is great, but they don't deal with longitudinal stuff,” says Bergstrom, noting that without continuity of care, “it doesn't get picked up as early as we'd like.”

In an ideal world, the first physician would be able to diagnose hidradenitis suppurativa or make a quick referral to a dermatologist. Unfortunately, patients are often stuck with long waits for referrals.

2. Shame & Embarrassment

When abscesses are found on the inner thigh or groin, people may be reluctant to seek care, and if women incorrectly think HS is a hygienic problem, that could further exacerbate shame or embarrassment associated with the condition. “There’s a lot of fear and stereotypes around [it, like] ‘I'm dirty. This is bacteria. This is germs,’” says Bergstrom, whose patients often think they should shower more. “I would love to free [patients] of that. You can shower how you want.”

3. Lack Of Knowledge About HS

Roughly a third of HS patients have a family member with the disease, and in a 2024 study, researchers found that this group was more likely to get a quick diagnosis after seeing a physician. For people without family history — and thus, likely without knowledge of the condition — a diagnosis is harder to come by, especially for people of color and folks with a high BMI.

With that being said, Bergstrom has noticed that primary care and ob-gyn physicians have more “ambient awareness” of the disease nowadays, and information is more accessible than ever. “I am so blown away by the online resources that weren’t available 20 years ago,” she says. “There are Facebook groups and Reddit threads. People are able to get plugged in and learn about treatments early. When everyone has a shared experience, it normalizes what people don't want to talk about.”

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