Some people develop hidradenitis suppurativa (HS) early in life, while others notice symptoms of this skin condition later. No matter when your symptoms begin, understanding HS can help you get the right treatment option for you.

Here’s what you should know about when HS usually starts. If you think you’re having symptoms, talk to your doctor for proper diagnosis and care.

When Do Hidradenitis Suppurativa Symptoms Usually Begin?

People can be diagnosed with hidradenitis suppurativa (also called acne inversa) at any age. However, symptoms of hidradenitis suppurativa most often appear during two key life stages. The first is during the late teenage years. The second is the mid-40s.

Some research suggests that about half of people with HS first notice symptoms between ages 10 and 21. But because diagnosis can sometimes take between seven and 10 years, some people may not remember exactly when their symptoms started. This can make these statistics less precise.

Many myHSteam members report first experiencing HS in their teen years:

• “I was diagnosed a few months ago, but I’ve had issues since I was a teenager.”
• “I suffered since I was a teen but didn’t know what it was until much later in life.”

• “I started when I was 16 and was diagnosed in my mid-20s.”

Some members received their diagnosis later in life. One shared, “‘I’m 47 and just got diagnosed.”

A few myHSteam members were diagnosed with HS outside of the typical age ranges:

• “I was 28 when it reared its devil head in my groin area, and I was diagnosed with it.”
• “I was 81 years old when diagnosed. From what I understand, that’s kind of old to be getting it.”
• “First flare at 51. Just officially diagnosed after turning 52.”

No matter when your hidradenitis suppurativa develops, it’s important to get the proper medical care. Talk to your dermatologist to confirm your diagnosis and find the most effective treatment for your specific case of hidradenitis suppurativa, as symptoms can vary from person to person.

Hidradenitis Suppurativa in Older Adults

Doctors are still learning about hidradenitis suppurativa in older adults. Some research shows that many older adults with HS are actually part of the second group listed above — those whose symptoms started in their 40s.

However, other research suggests that some people may not be diagnosed until around age 58 or 59. This suggests there may be two groups of older adults with HS: those who are diagnosed earlier and those who develop it later in life.

No matter when HS is diagnosed, its symptoms tend to be more severe in older adults. This could be because they’ve had the disease longer, giving it more time to progress. However, other age-related health problems, or comorbidities, might also contribute to increased disease severity. Researchers are still working to understand all the reasons why older adults often experience worse HS symptoms than those who start having symptoms when they’re younger.

Hidradenitis Suppurativa in Women vs. Men

Hidradenitis suppurativa affects men and women differently, though research on these differences is still limited. While some studies show a small difference, it’s probably not significant.

One of the key differences is that HS is more common in women than in men, according to the International Journal of Women’s Dermatology. However, men often experience more severe symptoms. Despite this, both women and men report a similar impact of HS on their quality of life. While women are more likely to develop HS than men, the difference between genders becomes smaller in older adults.

There can be differences in the location of HS symptoms in men and women too. Women often develop lesions, abscesses, cysts, tunnels, nodules, and other symptoms of HS on the front of their body, while men tend to have symptoms toward the back. Men are also more likely to have symptoms of hidradenitis suppurativa in less common areas, such as the face, neck, or back.

Men may be more likely to have other skin conditions along with HS, which can make the condition harder to treat. More research is needed to fully understand how these additional conditions affect HS diagnosis and treatment.

Hormones and Hidradenitis Suppurativa

Research suggests hormones may play a role in hidradenitis suppurativa, but more studies are needed to understand exactly how. While the research isn’t conclusive, a study in the International Journal of Molecular sciences found hormones called androgens may be linked to HS in women. Since women experience natural hormonal changes throughout their lives, these fluctuations may influence when HS symptoms start, improve, or worsen, as well as how long they last.

Research is ongoing, but many women notice clear connections between their hormones and HS symptoms. Some report their first symptoms appeared when they began having menstrual periods. As one myHSteam member shared, “I was 11 when I first got a pea-sized bump in my groin area. It appeared when my cycle came on.”

For women of childbearing age, HS often flares around menstruation. Studies show that 43 percent to 77 percent of women experience worse symptoms before or during their period. Members have confirmed this pattern. One shared, “My flares actually warn me when I’m getting my period. There is definitely some kind of connection.” Another said, “My HS flares up one week before my period, and it’s so bad. I get them on my armpits, stomach, inner thighs, and under my breasts.”

Menopause can change symptoms too. According to the International Journal of Women’s Dermatology, about 40 percent of women see improvement with menopause, while 44 percent experience worsening symptoms. On myHSteam, members have reported varied experiences after menopause:

• “I went through menopause at 40 and still have HS flares.”
• “I had early menopause and was on hormone replacement therapy. I can’t say it made a big difference in my HS flares.”
• “My HS flares worsened after menopause.”
• “My mom has HS, and her symptoms disappeared after menopause.”
• “Since menopause, my HS symptoms have been different.”

Pregnancy and postpartum hormones can affect HS differently for different people. Some may find that their symptoms improve, others stay the same, and some worsen. If you live with HS and you’re pregnant, postpartum, or trying to conceive, you should talk to your obstetrician and your dermatology team about coordinating your care. This will ensure you have HS under control while protecting your body and your baby.

Talk To Your Doctor

If you experience symptoms of HS or notice flare-ups or changes in your condition, talk to a healthcare provider. A dermatologist can provide accurate diagnosis and create a personalized treatment plan that adapts to your needs throughout life’s changes.

Talk With Others Who Understand

At myHSteam, you’ll find the social network for people with hidradenitis suppurativa and their loved ones. Here, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.

How old were you when you first experienced hidradenitis suppurativa symptoms? What were your first symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.