“’[The] painful nodules, bumps, and/or boils typically [occur] in the armpits, breast, or groin area,” explains Virginia-based Aaron Fong, MD, of U.S. Dermatology Partners, which is currently facilitating HS clinical trials in Phoenix, Arizona. “These can be painful and drain foul-smelling fluid. Unfortunately, since HS isn’t as well known and is often misdiagnosed, people may not seek appropriate treatment for years.” In fact, according to the American Academy of Dermatology Association, some people live with HS for 12 years or longer before getting diagnosed, as the condition is often mistaken for something else.

Why Does Hidradenitis Suppurativa Develop? 

It’s unclear what causes HS, but there appears to be risk factors ranging from hormones and family history/genetics to cigarette smoking and excess weight, according to the U.S. National Library of Medicine. Individuals in their 20s or 30s are more likely to develop HS than other age groups, as are women compared with men. In the United States, HS is also disproportionately high among Black people, so experts speculate that race or ethnicity may also affect a person’s chances of developing it. One thing experts do know is that the condition is linked to other serious health issues. “We don’t fully understand why, but HS is associated with other conditions, such as obesity, metabolic syndrome, and Crohn’s disease,” Dr. Fong says. “In addition, since HS is a disorder of the hair follicle, it often occurs with similar related disorders, such as acne conglobata and dissecting cellulitis of the scalp.”

While there is still a lot to learn about HS, we know that it can increase your risk of other potentially serious health issues. Here are six major ones to be aware of.

1. Metabolic syndrome

HS appears to be linked to a higher risk of metabolic syndrome, a cluster of conditions — high blood pressure, high blood sugar, excess body fat around the waist, high cholesterol or triglycerides — that often occur together. According to a review published in May 2019 in the International Journal of Dermatology, an analysis of studies examining the possible link between HS and metabolic syndrome indicated a strong association. Left unmanaged, metabolic syndrome can increase your risk of type 2 diabetes, heart disease, and stroke. While there are many ways to address metabolic syndrome, making lifestyle changes, such as eating a healthy diet and increasing exercise, may help reduce the risk of serious complications.

2. Axial spondyloarthritis 

This type of arthritis mainly affects the spine, though for some, it can affect the joints in the arms and legs, as well as the skin, intestines, and eyes. Research has indicated that HS may be more common in those who also experience this condition. A study of axial spondyloarthritis patients in The Netherlands published in February 2019 in the journal Seminars in Arthritis and Rheumatism found that HS was more prevalent in that group compared with the general population. The main symptom of axial spondyloarthritis is lower back pain, but some people may also experience swelling in the arms and legs. Treatment for the condition varies but may include medication, physical therapy, exercise, and lifestyle modifications.

3. Inflammatory bowel disease 

Otherwise known as IBD, inflammatory bowel disease is an umbrella term used for disorders that involve chronic inflammation of the digestive tract. The two main types are ulcerative colitis and Crohn’s disease. People with IBD may experience diarrhea, rectal bleeding, abdominal pain, weight loss, and fatigue, and treatment may require medications, nutritional support, and in some cases, surgery. A comprehensive review of large-scale studies published in July 2019 in the journal JAMA Dermatology found a significant association between HS and risk of IBD in patients. Based on their findings, the study authors suggested that people with HS who experience recurrent symptoms such as diarrhea, bloody stool, and abdominal pain see a gastroenterologist.

Heart disease is the leading cause of death in the United States: One person dies every 36 seconds from it, according to the Centers for Disease Control and Prevention. There are many forms of heart disease and causes of cardiovascular-related death, but research has shown that HS is associated with significantly increased risks of adverse cardiovascular-related outcomes such as stroke, heart attack, and death. In a study published in November 2019 in the journal JAMA Dermatology, researchers found that having HS significantly increased the risk of heart attack or stroke. Heart disease treatment varies widely from case to case, but lifestyle modifications and medications may be necessary, as well as medical procedures or surgeries in some cases.

5. Depression, anxiety, and suicide risk 

Skin disorders that cause visible symptoms can take an emotional toll and contribute to low self-worth, embarrassment, and social isolation. This, in turn, may increase risk for anxiety, depression, and suicidal thoughts and generally affect quality of life, according to a review published in August 2021 in the International Journal of Dermatology. A review of 10 studies published in June 2019 in the journal JAMA Dermatology found that depression and anxiety are common in people with HS. Given this link, the researchers recommend developing strategies to treat mental health conditions that accompany HS.

6. Sexual dysfunction 

There are many forms of sexual dysfunction, but the term generally applies to any problem that prevents a person or couple from experiencing satisfaction from sexual activity. According to a study published in August 2019 in the journal Dermatology, there’s a particularly high prevalence of sexual dysfunction in people with HS. The study indicated that being in a stable relationship seemed to protect women with HS from developing sexual dysfunction, suggesting that the issue may be partially related to disease activity, active lesions, and other symptoms. Treatment for sexual dysfunction depends on the cause and circumstances, as both physical and psychological factors may be at play, but medications and psychotherapy may be helpful.

How Seeing a Dermatologist Can Help

Even though HS can affect much more than your skin, a good place to start is by seeing a dermatologist who specializes in the condition. “Dermatologists are trained to recognize, appropriately diagnose, and treat hidradenitis suppurativa,” Fong says. “With the correct diagnosis, we can manage it appropriately to prevent progression and worsening of HS, relieve pain, and reduce scarring.” From there, you can work to develop a more comprehensive treatment plan, which may incorporate other healthcare specialists to help you manage related conditions. And while HS itself is still not fully understood, experts say emerging research may offer relief to people with HS in the future. “While there is still a lot we do not know about HS, there has been a lot of research in the last several years,” Fong says. “Luckily, we have made several breakthroughs, leading to many different treatment options for this condition. We hope that more of the general public can be aware of this condition so they can seek treatment earlier and reduce its impact on their quality of life.”