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What Is Hidradenitis Suppurativa?
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder. When you have HS, your immune system causes inflammation that blocks your hair follicles and makes them swell up. Painful, fluid-filled bumps form in places where skin rubs against skin, such as under your arms, breasts, or buttocks, or in your groin. These bumps can break open, leak fluid and pus, and leave behind scars. Acne inversa is another name for HS.
HS is a chronic and painful condition that can affect both your physical and emotional health. While it isn't curable, it is manageable with treatment.
Who gets it?
Around 1 in 100 Americans have HS, but it's more common in Black Americans. The condition affects 1.3% of Black people, 0.75% of White people, and 0.07% of Hispanic/Latinx people.
You're more likely to get HS if it runs in your family. Around 1 in 3 people with HS have at least one family member with the condition.
HS is three times more common in people who were assigned female at birth (AFAB) than in those who were assigned male at birth (AMAB). It often first appears around the time of puberty.
What causes it?
HS isn't caused by bad hygiene, and it's not contagious. Those are just myths. It happens when your immune system overreacts and causes inflammation in your hair follicles the tube that surrounds each strand of hair on your body. Inflammation blocks the opening to the follicles. Skin cells build up inside and expand the follicle until a lump forms.
A combination of genes, hormones, and things in your environment cause the condition. Researchers have found many genetic changes that they think are involved in HS. Some of these genes code for proteins that control inflammation in the body. Others code for proteins that strengthen the skin. If your parent carries the altered HS gene, you and your siblings each have a 50-50 chance of getting HS.
Risk factors
These things increase your risk of HS:
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Age. HS usually starts in the teens and early 20s, although it can begin later in life.
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Sex. It's more common in women than in men.
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Race. HS affects more Black people than White people.
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Family History. You're more likely to have this condition if someone else in your family has it too.
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Smoking. Most people with HS smoke tobacco.
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Weight. HS is more common in people with obesity. This may be because of hormone changes or the friction of skin rubbing against skin.
What Are the Symptoms of Hidradenitis Suppurativa?
Some people with HS have mild symptoms. Others have more severe symptoms. Obesity and smoking are linked to more severe symptoms.
HS causes pea-sized, painful bumps to grow on your skin. The lump looks like a pimple or boil. It forms an abscess, which is a collection of pus. There may also be bumps with a black dot on top that look like blackheads.
The nodules often grow in places where skin rubs against skin and hair grows. You may see them:
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On or under your breast
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In your armpit
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On your lower belly
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Around your genitals
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Around your buttocks or on the skin between your buttocks and genitals
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In your inner thighs
These lumps may break open and drain fluid or smelly pus. Eventually, the bumps can grow together, and tunnels form under the skin. When HS clears up, it may leave behind scars.
What are the early signs?
HS starts with symptoms like:
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Burning
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Stinging
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Pain
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Itching
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Warmth
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Excess sweating
These symptoms often appear first. Then lumps and pus-filled bumps appear on the skin.
How does it vary by skin tone?
Black people are more likely to have HS than people of other races, but the condition may be harder for doctors to see because of how it looks to untrained eyes. The HS lumps look pink or red on light-colored skin. On darker skin tones, they may be dark brown, purple, gray, or skin-colored. There may also be dark spots caused by inflammation. The condition also tends to be more painful in Black people than in White people.
How Is Hidradenitis Suppurativa Diagnosed?
Getting diagnosed early is important. The longer you wait, the more severe HS gets, and the more complications you can have. It can be hard to get diagnosed because this condition often looks like acne or boils. People with HS may wait seven years or longer to get the right diagnosis.
Dermatologists are specialists who diagnose and treat skin conditions like HS. The doctor will ask about your medical history, family medical history, and symptoms. Then they'll look for bumps in places like your underarms, breast, buttocks, and inner thighs.
There aren't any tests specifically for hidradenitis suppurativa. But your doctor may:
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Take a sample of fluid or pus from the lump to test for infection
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Do an ultrasound to see if there are tunnels under your skin
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Remove a small piece of a lump to biopsy
Racial disparities in diagnosis
Black and Hispanic people face even longer delays, waiting almost two years longer for a diagnosis than White people. Black people don't see a dermatologist, on average, until they've had symptoms for five years. These delays give HS time to get worse. By the time people of color are diagnosed, their disease often has progressed to the point where they need surgery.
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What Is the Treatment for Hidradenitis Suppurativa?
The dermatologist will create a treatment plan to reduce flare-ups, relieve pain, and prevent HS from getting worse. Treatment can include topical and oral medicines, and surgery.
Medication
options for HS
Topical medicines
These are creams that you rub on your skin.
Topical antibiotic. Clindamycin (Cleocin T, Clindacin ETZ, others) is an antibiotic that helps reduce HS lumps and clear up infections.
Resorcinol. This cream reduces swelling, pain, and pus-filled lumps. But it takes three to four months to improve symptoms, and it can irritate the skin.
Oral medicines
These medicines work all over your body.
Antibiotics. Medicines like tetracycline kill bacteria on your skin and reduce inflammation. Taking two antibiotics together helps the medicine work better. You may need to stay on an antibiotic for two to three months to clear up your symptoms.
Hormone medicines. Hormones called androgens make HS symptoms worse in some people. If you get flare-ups around your period or you have polycystic ovary syndrome (PCOS), your doctor might prescribe one of these medicines to regulate your hormone levels:
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Birth control pills containing estrogen
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Cyproterone acetate
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Spironolactone
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Metformin
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Finasteride
Retinoids. These medicines, which come from vitamin A, are sometimes prescribed for people with acne and HS that hasn't improved with other treatments. Because retinoids cause side effects, your doctor will closely monitor you while you take them.
Injectable medicines
Biologics. These medicines block immune system chemicals like tumor necrosis factor-alpha (TNF-alpha) and interleukin-17 (IL-17) that cause inflammation. They come as a shot that you give yourself. A biologic may be an option if other medicines haven't helped.
These biologics treat moderate to severe HS:
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Adalimumab (Humira)
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Bimekizumab-bkzx (Bimzelx)
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Infliximab (Remicade)
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Secukinumab (Cosentyx)
Common side effects from biologic drugs include:
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Infections
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Skin reactions where the needle went in
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Headache
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Diarrhea
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Cold symptoms
Corticosteroids. These medicines bring down inflammation. Your dermatologist may inject corticosteroids into the lumps to make them smaller.
Procedures for HS
These procedures may be an option if medicine hasn't cleared your skin.
Laser hair removal. HS starts in hair follicles. During this procedure, a laser damages hair follicles to prevent new lumps from forming. It may take several months of treatments to see results.
Incision and drainage. After numbing your skin, the dermatologist makes a small cut in a growth and drains out fluid and pus. This procedure relieves pain quickly, but there's a high chance that the lump will come back afterward.
De-roofing. During this minimally invasive procedure, the doctor removes the top, or "roof," of the growths. The tissue underneath can then heal. Possible side effects include bleeding, infection, and scars.
Excision. This more invasive procedure removes the pus-filled lumps. It's an option when other treatments haven't helped.
Pain management
options for HS
HS can be so painful that it has a negative effect on your quality of life. You don't have to live in pain. Managing HS with medicine and surgery is one way to relieve pain.
Treatments like these directly manage HS pain:
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Cognitive behavioral therapy (CBT) teaches you techniques to cope better with your pain.
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Pain-relieving creams like topical nonsteroidal anti-inflammatory drugs (NSAIDs) and lidocaine ointment treat pain at the skin.
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Oral NSAIDs like ibuprofen and naproxen relieve pain all over your body.
If pain relievers don't help enough, your doctor might refer you to a pain management specialist.
Disparities in
treatment
Researchers use clinical trials to test how safe new HS treatments are and how well they work. Minority groups are not well-represented in these studies.
Out of 15 clinical trials for HS, only 14% included Black people. Hispanic or Latino people made up only 7% of people in the studies, and Native American people just 1%. When people from specific groups aren't included in HS studies, doctors can't tailor treatment to them because they don't know how a drug might help or hurt that group of people.
Other disparities make it harder for people of color to access treatment. Black Americans are less likely than White Americans to have health insurance needed to pay for doctor visits and medicines. Black people wait longer for diagnosis and treatment than White people. These delays can lead to more severe HS and more complications like skin cancer. They're also more likely to have Medicaid or Medicare, which don't reimburse for HS medicines and procedures as well as private insurance.
What Can You Do to Improve Hidradenitis Suppurativa?
While you follow the treatment plan your dermatologist recommended, there are other things you can do at home to ease symptoms during flare-ups.
Can you prevent HS?
Because the cause isn't fully known, you may not be able to prevent HS. Still, there are things you can do to reduce the number of flare-ups you get.
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Stay at a healthy weight with diet and exercise.
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If you smoke, ask your doctor for help quitting.
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Manage stress with relaxation techniques like deep breathing, meditation, and yoga.
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Avoid exercising outdoors when it's hot and humid.
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Wear loose clothing that doesn't rub against your skin.
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Get counseling or therapy if HS causes stress.
Self-care
options for HS
Care for your skin to reduce flares and relieve symptoms.
Cleanse your skin. Wash with an antibacterial cleanser that contains benzoyl peroxide or zinc pyrithione. These acne washes kill the bacteria on your skin that cause flare-ups. Wash your skin gently. Scrubbing can aggravate HS.
Use a warm compress. Moisten a washcloth with warm water or pour warm black tea over a clean piece of cloth or gauze pad. Hold the warm compress to the painful lump for 10 minutes.
Remove hair carefully. Wash your skin first with an antibacterial soap. Then coat your skin with a shaving gel and shave very gently to avoid nicks and cuts. Don't wax because it irritates the skin. Laser hair removal both gets rid of unwanted hair and reduces HS flare-ups because it reduces the number of hair follicles.
Use a gentle antiperspirant/deodorant. The product you use should be free from fragrances, alcohol, parabens, and dye.
Never pop HS. Though the fluid-filled lumps might tempt you to pop them, don't. Doing so could cause an infection and leave a scar.
Living With Hidradenitis Suppurativa
HS is more than a skin condition. It has far-reaching effects on many parts of your life, including work and relationships.
Managing HS
and relationships
A condition that is this visible can have a big impact on your social life. The bumps on your skin, scars, and odor can cause embarrassment and shame. Sex for people with HS can be painful. In one survey, more than 60% of people with HS said their condition affected some part of their relationship with their partner, including their sex life. Some people avoid romantic relationships because of HS.
Talking about HS with a partner or friends can be hard because of the stigma and misinformation that surround this condition. You don't have to tell people about HS, but explaining it will help them understand how it affects you. Let them know that it isn't contagious and isn't caused by poor hygiene.
Managing HS and work
HS can affect your ability to work. When you're in a flare-up, you may need to miss work. Symptoms can also make it hard to concentrate on the job.
You aren't required to tell your company about HS. But if your manager or human resources person knows, they can help you get the accommodations you need to do your job like a comfortable seat cushion or a standing desk to relieve pressure on your thighs and buttocks.
Caring for your
mental health
While you treat HS, don't neglect your emotional well-being. This condition can have so many effects on your mental health. The sores can make you feel self-conscious and embarrassed. The pain may keep you up at night or prevent you from having a sex life. It's not surprising that depression and anxiety are common in people with HS. People with this condition are twice as likely to attempt suicide than those without it.
Don't try to navigate your condition alone. Ask for help when you need it. If you have a family member with HS who understands what you're going through, talk to them. Join an HS support group. Or make an appointment with a mental health professional like a therapist or counselor.
Disparities in
mental health
The emotional effects of HS may hit people in certain minority groups especially hard. Hispanic people with this condition have higher rates of depression than White people. Yet many doctors don't screen their patients for depression. If your doctor doesn't ask about your mental health, speak up. Ask to be referred to a mental health provider for an evaluation and treatment.
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Resources to
help with HS
These are a few places to get help for HS:
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HS Foundation. This organization works to improve the lives of people with HS. It offers information on the latest treatments and advice on how to talk about HS with people around you. It also has a directory of HS specialists around the country.
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HS Connect. Created by the HS community, this organization offers information, resources, and support to people living with HS.
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The Association of Hidradenitis Suppurativa and Inflammatory Diseases. It's a national patient advocacy group that focuses on education, awareness, diversity, and inclusion.
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Hope for HS. This volunteer-based organization offers a Facebook group, support groups, community meet-ups, and educational webinars.
Learn More About Hidradenitis Suppurativa
Managing HS In Sensitive Areas
Caring for HS as a Person of Color
The Importance of a Support Network