Facts About Hidradenitis Suppurativa That Dermatologists Wish More Young Women Knew

For most women, the road to healthy skin is rarely straightforward. What begins as pubescent breakouts evolves into hormonal issues, adult acne, and stressful flare-ups. Managing your skin along the way is no easy feat. But things become much more difficult when the concern isn’t so straightforward, like in the case of hidradenitis suppurativa. Known simply as HS, the condition is the root of discomfort for many women, causing painful bouts of inflammation, soreness, and abscesses in equally uncomfortable areas.

While knowledge of HS is growing, navigating the disorder can still feel murky. Fortunately, you don’t have to make the journey alone. Ahead, we asked four board-certified dermatologists what they wish more women knew about the disorder.

It Takes Time For Symptoms To Arise

Sure, skin conditions are common. But when tiny bumps turn into lesions, it can be a sign of HS. Instead of ignoring the issue, dermatologists stress the importance of getting an expert opinion early on. With HS, many patients remain undiagnosed or misdiagnosed initially due to dormant symptoms. According to Shira Wieder, MD, a board-certified dermatologist at Montefiore Einstein Advanced Care, HS occurs over time, sometimes taking up to 10 years after diagnosis.

The exact cause is unknown, but it is linked to defective hair follicles, which chronically plug the skin with keratin, eventually forming cysts. “Though it often starts after puberty, the effects usually occur later in life, presenting with recurrent painful bumps, boils and tunneling under the skin in areas such as the armpits, groin area, under the breasts and folds of the abdomen,” Wieder says.

Misdiagnosis Is Very Common

When the symptoms do show, they can appear to be common to the untrained eye. San Francisco-based board-certified dermatologist Caren Campbell, MD, FAAD, mentions that HS is frequently misdiagnosed as other skin conditions whose flare-ups yield similar symptoms, adding that “misidentifying the condition only leads to its unnecessary progression.”

It’s Not Contagious

While skin diseases affect as many as one in three Americans, the most common conditions are not contagious. Just like acne, eczema, and psoriasis, HS isn’t caused by physical contact, but by a deeper-rooted issue. In this instance, the driving force is the defective hair follicle, not a primary infection. Dr. Campbell explains that when the follicle becomes blocked, it ruptures, triggering a strong inflammatory response in the skin.

Still, many people associate skin disorders with poor hygiene, feeding into the idea that they can become transmitted through touch. That cloud of negativity amplifies around young women who are significantly more prone to developing HS due to hormonal influences. “Many women are often stigmatized, but should know that personal habits alone don’t drive HS or trigger flare-ups,” says Whitney Hovenic, a board-certified dermatologist and Mohs surgeon. Understanding the root of the disorder isn’t just essential for diagnosis — it’s key to breaking this stereotype.

How You Feel Is Just As Important

It’s never comfortable to talk about a disruptive skin condition, but managing it alone adds another layer of stress. This is especially true with young women who may be experiencing symptoms for the first time in their collegiate years. Since HS affects sensitive areas of the body, for example, the buttocks, groin, and inner thigh — flare-ups can take a toll on your emotional health. Alicia Zalka, MD FAAD, a board-certified dermatologist and associate clinical professor of dermatology at Yale University School of Medicine, says that addressing the issue in “emotionally charged areas can leave patients feeling anxious and self-conscious.” In her experience, those feelings also contribute to the growing rate of misdiagnosis. “Many patients just don’t feel comfortable reporting the condition, let alone undressing to reveal the problem,” she says.

Another layer to consider is your mental health. According to Wieder, HS has also been heavily linked to depression and suicidal thoughts. She suggests talking to your dermatologist about how you’re feeling. “Working as a team with psychologists and psychiatrists ensures all issues are addressed, including your mental and emotional health,” she says.

The Final Takeaway

Though it affects only about 1% of people globally, HS can have a significant impact on your overall health. That’s why an early diagnosis is essential. Not only can it prevent long-term damage, but it can also ease your mind. If you’re a young woman dealing with HS, you don’t have to feel shame or embarrassment. Instead of hiding in the shadows, talk to your dermatologist and don’t wait to get diagnosed.

Presented by BDG Studios