HS 101: Symptoms And Triggers Of This Often Misdiagnosed Skin Condition

There’s nothing more alarming than finding out your skin has a case of mistaken identity. You go years convinced you have horrible acne, when in reality, you have a chronic skin condition that easily poses as what most people — and even doctors — dismiss as “bad” skin.

But that’s how hidradenitis suppurativa (HS) operates — and we think decoding its symptoms can help you manage this long-term skin condition before it gets too out of control. Here’s everything you need to know about HS.

What Is HS, And Why Should You Care?

HS is a chronic inflammatory skin condition characterized by nodules, abscesses, and, in severe cases, sinus tracts (inflamed tunnels) under the skin. Dr. Divya Shokeen, MD, a board-certified dermatologist, says, “HS most commonly begins between ages 18 to 25, corresponding directly with college years, when hormonal fluctuations are at their peak and stress, a known trigger, is high.”

Because HS begins with painful lumps under the skin that can become red and drain pus, it often masquerades as acne. “They start out as what seems to be shaving bumps, or large painful pimples with redness and sometimes a foul odor,” says Dr. Alicia Zalka, MD, a board-certified dermatologist and associate clinical professor of dermatology at Yale University School of Medicine. “Having one or two of these that fix themselves is not considered concerning. But if these continue to occur on and off over time and are found in multiples, it is time to get checked out,” she says.

What Causes HS, And Who Is Most At Risk?

“HS begins with blockage and rupture of hair follicles, triggering an intense immune or inflammatory response,” says Shokeen. It is not caused by bacteria, though secondary infection is common.

Shokeen says genetic factors play a strong role, and approximately one-third of patients have a family member with HS. Other contributing factors? A dysregulated immune system, hormonal influences, obesity (due to constant friction and rubbing), and smoking. “People who suffer from polycystic ovarian syndrome (PCOS) may also be at increased risk of HS,” says Zalka. Most importantly, both dermatologists stress that HS is not caused by poor hygiene and isn’t contagious.

Where Is HS Commonly Found, And What Should You Look Out For?

HS targets apocrine glands — a type of sweat gland — which are concentrated in areas like the underarms, breasts, buttocks, inner thighs, and groin. Here’s what to look out for:

Early Signs:

• Recurring, painful lumps or boils deep in the skin
• Flare-ups that alternate with calmer periods
• Lesions that resolve but keep coming back

“This is deceptively reassuring, so that patients often wait years before seeking help,” says Shokeen.

Advanced Signs:

• Lumps that grow larger and begin to rupture
• Drainage of pus or blood-tinged, odorous fluid
• Formation of sinus tracts under the skin

If you have a family member with similarly recurring skin problems, and your symptoms started in your teens or early 20s, those are two telltale signs that it could be HS. “Staying on top of HS is key to avoiding later complications of pain, scarring, and in rare cases, disfigurement,” says Zalka.

Why Is HS So Underdiagnosed?

The main reason HS goes undiagnosed or misdiagnosed is that patients often feel shame or embarrassment, as the body parts affected are private areas. “[They’re] sensitive and emotionally ‘charged’ body areas, leaving patients anxious and self-conscious. They don’t feel comfortable reporting the condition, let alone undressing to reveal the problem,” says Zalka.

HS is rarely taught in depth in medical school, and while some primary care doctors might be able to diagnose it, Zalka says it is best treated and monitored by a dermatologist, who is trained specifically in its diagnosis and management.

Shokeen says the average diagnostic delay is seven to 10 years, which means patients suffer for almost a decade before being correctly diagnosed. A major reason for this is that HS can mimic other common conditions, such as folliculitis, boils, infected cysts, or even Crohn’s disease.

How Is HS Managed?

Dermatologists ask patients to avoid certain habits, the first being smoking. Picking and trying to squeeze or pop the lesions is also not recommended, says Shokeen, as this drives bacteria deeper and accelerates scarring and tunnel formation.

Patients are also advised to avoid using razors on the affected areas; it’s better to use electric clippers, depilatory creams (think Nair), or laser hair removal as a long-term option. Plus, don’t wear tight, synthetic, or rough-textured clothing over affected areas.

Shokeen recommends using unscented, gentle roll-ons or natural deodorants to avoid further irritation. She also recommends avoiding:

• Deodorants with alcohol, fragrance, or aluminum
• Harsh soaps, scrubs, or loofahs on affected skin
• Greasy skincare products in skin folds
• Laundry detergents with heavy fragrance or fabric softeners

One of the most important things patients with HS can do for themselves is treat themselves with care and gentleness. “Feel no shame or embarrassment if you think you have HS. Don't hide in the shadows,” says Zalka. She says to see a board-certified dermatologist who treats you with kindness and expertise — and if that doesn’t happen, find one who does. Doing this solo is not the move.

Presented by BDG Studios