Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that causes painful, recurring nodules and tunnels deep in the skin.
Do you get regular acne-like breakouts in odd spots on your body — such as your armpits, inner thighs or under your breasts? Take a closer look. It may not be acne, but a lookalike skin condition called hidradenitis suppurativa, or HS.
It’s easy to confuse HS with acne when it first appears. This skin disease can look similar to pimples or deep acne cysts. It’s not acne, though, and treatment is crucial. Without it, HS can worsen and become more difficult to treat.
“HS can greatly impact a person’s quality of life, physically and emotionally,” says Mikael Kevork Horissian, MD, a dermatologist and founder of Geisinger’s Hidradenitis Suppurativa Clinic. “Flare-ups are unpredictable and can be painful, ooze blood and pus, and have an odor. It can make patients self-conscious, negatively impacting their professional, social and sexual lives.”
Many people live with HS for years before being diagnosed. Understanding its causes, identifying symptoms and talking to your doctor about available HS treatments are key to finding relief and improving your quality of life.
What is hidradenitis suppurativa?
HS, also known as acne inversa, is a chronic inflammatory skin disease, much like psoriasis or eczema. An overactive immune system attacks hair follicles, sweat glands or areas where there’s skin-to-skin contact, such as the armpits or inner thighs. Painful, recurring nodules form deep in the skin.
The nodules frequently fill with pus, forming abscesses. If they break open, they ooze pus and blood, have a foul odor and may leave behind scars and discoloration.
“HS is not a sexually transmitted disease, it’s not caused by poor hygiene and it’s not contagious,” explains Dr. Horissian. “HS is not an infection. However, bacteria that lives on the skin can sometimes make HS spots worse or cause real infections.”
Hidradenitis suppurativa causes
The cause of HS is still being studied, but medical experts believe genetics, hormones and environmental factors play a role. Women are three times more likely to have HS than men, and African Americans and Latin Americans are also at higher risk.
Other risk factors for HS include:
- Excessive hair growth
- Family history of HS
- Fluctuating sex hormones, which typically occurs after puberty and before menopause
Hidradenitis suppurativa symptoms
HS tends to appear in areas where you have hair or where your skin rubs together, such as the:
- Groin area
- Inner thighs
- Crease under your breasts
- Folds of your stomach
- Nape of your neck
Before a breakout appears, you may feel skin discomfort in the area. Your skin may swell, and burn, itch or sweat excessively.
Soon, you may notice breakouts on your skin that look like pimples or nodules, along with redness, pain, swelling and itching. These tender nodules, which can become larger, can take weeks or even months to clear. They can reappear in exactly the same spot or area.
As HS progresses, more nodules may appear and start to grow together. The nodules can fill with fluid and become painful abscesses. Abscesses may heal, but often leave behind scarring and discoloration. This repeated healing and reopening can eventually cause tunnels to form beneath your skin, called sinus tracts. The tunnels may have small, pitted areas near them that look like blackheads or open holes.
Hidradenitis suppurativa treatment
While there is no cure for HS, several treatment options can help prevent flare-ups and improve your quality of life.
“My goal is to take patients from a thrill ride to a kiddie ride,” says Dr. Horissian. “With treatment, the highs, or flare-ups, shouldn’t be as severe or often.”
Your treatment options will depend on the severity of your case. But your provider will likely start with a prescription medication or a combination of them to manage your symptoms, including:
- Injectable steroids to ease pain and swelling
- Topical or oral antibiotics to reduce inflammation and fight infections, if necessary
- Biologics to help quiet an overactive immune system
- Hormonal medications, such as birth control, spironolactone or metformin
Warm compresses and over-the-counter or prescription pain medications can ease discomfort and inflammation, too.
Surgery for hidradenitis suppurativa treatment
For nodules and tunnels that don’t respond to medication, surgery is an option.
“In many cases, the HS disease creates a tunnel or wall inside a nodule that is resistant to medical therapy,” says Dr. Horissian. “For these persistent lesions and tunnels, surgical intervention is a great tool to remove them and prevent complications. Fortunately, most procedures are outpatient and done under local anesthesia.”
Surgical options for HS include:
- Deroofing. For this procedure, the doctor numbs the area and removes the HS tissue in and on the “roof” of the tunnel in your skin. It heals on its own without stitches.
- Staged CO2 marsupialization. Performed by only a handful of physicians across the country, this specialized procedure uses a carbon dioxide laser to remove a larger area of the diseased tissue and tunnels, sparing as much of the normal skin as possible. The area is left to heal without stitches.
- Laser treatment. This procedure destroys hair follicles and abscesses and has been shown to decrease the number of inflamed bumps over time.
Lifestyle changes to manage hidradenitis suppurativa symptoms
While flare-ups are generally unpredictable, you can make lifestyle changes that may help reduce the severity of HS and slow outbreaks, such as:
- Losing weight. Achieving a goal weight is not only good for your overall health, but also may help with your HS.
- Quitting smoking. Smoking has been linked to an increased risk of HS and may make the disease more severe.
- Avoid shaving trouble spots. Shaving can irritate your skin and cause flare-ups.
- Wearing loose-fitting clothing. Tight clothing can cause friction and irritate the skin, triggering flare-ups.
- Practicing good hygiene. Regularly washing the affected areas with antibacterial soap can help prevent infection and reduce flare-ups. Just be sure to scrub gently, so you don’t irritate your skin.
- Avoiding triggers. Identify and avoid factors that may trigger flare-ups, such as excessive sweating, stress and certain foods.
“What works for one person may not work for another, so it may take some trial and error to find the most effective treatment plan for you,” says Dr. Horissian. “Regular follow-ups with your doctor are crucial to monitor your progress and make any necessary adjustments to your treatment plan.”
When to talk to your doctor about hidradenitis suppurativa
If you have uncontrolled pain and deep nodules that last for weeks and continue to come back in the same spots, talk to a dermatologist who specializes in HS. The HS Foundation has a clinic finder to help find one near you, like Geisinger’s HS specialty clinic in Danville.
Early detection and treatment are key to a positive outcome. Living with untreated HS can negatively affect your life in many ways and cause:
- Anxiety and depression
- Pain, discomfort and an inability to perform normal daily activities
- Progression of disease activity
- Severe scarring that can restrict movement
People with HS also are at a higher risk for arthritis, diabetes, heart disease and even skin cancer in rare cases.
“HS can last for years, but getting treatment early can help you feel better, control flare-ups and lower your risk for complications,” says Dr. Horissian. “Medical therapies and procedures, counseling and support groups offer symptom relief so you can live your life to the fullest.”