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Symptoms of hidradenitis suppurativa (HS), also called acne inversa, are different for everyone, but they always involve distinctive skin lesions and usually pain. Many people experience cycles of flare-ups followed by temporary improvement, but symptoms of this skin condition can also remain consistent or become more severe over time.
HS symptoms almost always begin after the onset of puberty, with people in their 20s and 30s at the highest risk of first developing symptoms. The timing of onset is most likely linked to the body’s changing levels of sex hormones. Hormonal changes may be the reason HS rarely develops after menopause. Women experience HS at a rate three times that of men, but men are more likely to develop severe cases.
Hidradenitis suppurativa is not contagious. HS symptoms are not caused by poor hygiene or sexually transmitted infections.
The body has two types of sweat glands — apocrine and eccrine. HS develops in areas of the body where apocrine sweat glands are present. Apocrine sweat glands are mostly found in areas that have a high concentration of hair follicles, whereas eccrine sweat glands cover most of the body.
Apocrine glands release sweat into the hair follicle, and eccrine glands release sweat directly onto the skin. Apocrine glands produce oily sweat in the armpits and groin that can cause body odor when exposed to bacteria on the skin.
HS typically affects the following areas of the body:
Less frequently, HS also occurs around the neck, scalp, back, and abdomen.
HS typically causes several types of skin lesions, including inflammatory lesions, comedones (blackheads), tunneling, and scarring.
Inflammatory skin lesions seen in HS are swollen, tender nodules or lumps under the skin in areas usually affected by HS. These inflammatory nodules can become painful abscesses — pus-filled pockets in the skin. HS can also cause open comedones, which usually appear in pairs.
HS can create tunnels under the skin, called sinus tracts, that can occur alone or connect different lesions. These tunnels can drain strong-smelling pus and sometimes blood. Scarring occurs due to tunneling and recurrent inflammation.
Initial symptoms of HS vary from person to person but tend to begin with inflammatory skin lesions that may become abscesses. Tunneling and scarring do not occur with early or mild HS.
Early symptoms of HS can include:
Hidradenitis suppurativa disease severity is classified by the Hurley staging system, from stage 1 (mild) to stage 3 (severe). Early symptoms can also be classified as stage 1 HS.
About two-thirds of people with HS will never progress past the mild symptoms of stage 1. However, some people’s symptoms will progress over time and become more severe.
If you are experiencing any of the early symptoms of HS, talk with your health care provider. They can refer you to a dermatologist who can determine if a diagnosis of HS is correct. A dermatologist will examine your skin and ask about your medical and family history.
HS is a progressive condition, meaning it can grow worse without treatment. Over time, symptoms may become more widespread, more painful, and more disruptive to a person’s life. Lesions will seem to go away and then return.
Early diagnosis and treatment of HS can help improve outcomes in many people by slowing progression and preventing symptoms from becoming more severe.
As HS progresses, it may transition from mild (stage 1) to moderate (stage 2) HS. Symptoms of stage 2 HS include:
In about 4 percent of cases, HS symptoms progress to severe disease, or stage 3 HS. Symptoms of stage 3 HS include:
Among people with more advanced cases of HS, other symptoms may also be present, including:
HS follows a cycle of flares and remission. This means people with HS can experience acute symptoms followed by a period of inactive disease. The possibility of a flare can create stress and worry for some people with HS even during periods of remission.
In some people, HS symptoms reliably flare and become worse during specific circumstances known as triggers. Although everyone experiences HS differently, common triggers include:
Some people find that certain foods, such as dairy, sugar, and brewer’s yeast, can increase their HS symptoms.
In addition to skin lesions, one of the primary symptoms of HS is pain. Many people with HS experience pain and discomfort because of the lesions’ location. Lesions in the armpits or groin can be repeatedly irritated by rubbing against skin or clothing.
Some people with poorly controlled HS experience near-constant pain from inflamed lesions. People with less severe symptoms or better controlled HS may experience pain only during flares.
Hidradenitis suppurativa can have a significant impact on a person’s quality of life. In addition to experiencing pain from bumps, tunneling, or scars, people with HS may worry about symptoms growing worse, feel self-conscious about the smell of ruptured lesions, or fear that people will misunderstand their condition.
All these concerns can lead to depression and anxiety, common comorbidities of HS. Research has shown that people with HS are more likely to experience depression, anxiety, bipolar disorder, and other mental illnesses compared with people who have other skin diseases, such as psoriasis and skin cancer.
Research has also found that people with HS have a higher suicide risk than the general population. It is as important to seek help for mental health issues as it is to seek help for HS skin symptoms. Contact the National Suicide Prevention Lifeline at 800-273-8255 if you are in crisis.
Seeking help from a mental health provider can be a good strategy for people with HS who are experiencing symptoms of depression, anxiety, or other issues associated with their condition. Connecting with others with HS on myHSteam or through in-person support groups can also help alleviate feelings of isolation. Some people may benefit from antidepressant medications as well.
People with HS may be more likely to also have other health conditions. Potential comorbidities include metabolic syndrome, heart disease, Crohn’s disease, ulcerative colitis, and obesity. Talk with your doctor about possible related health conditions and any appropriate interventions to reduce your risk.
HS symptoms can significantly reduce quality of life, affecting work, school, and interpersonal relationships. Severe cases of HS can be debilitating and lead to significant disability. Many effective treatment options can be used to manage HS symptoms, including topical antibiotics such as clindamycin and doxycycline, corticosteroid injections, hormonal therapies, and biologic drugs such as adalimumab- (Humira). Sometimes surgical treatment is appropriate. However, some cases of HS can be difficult to get under control.
On myHSteam, the social network for people with HS and their loved ones, more than 24,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.
What symptoms of HS have you experienced? What steps have you taken to avoid or manage flare-ups? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here.
Kristopher Bunting, M.D. studied chemistry and life sciences at the U.S. Military Academy, West Point, and received his doctor of medicine degree from Tulane University. Learn more about him here.
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