If you’ve been battling acne on your body that never seems to come to the surface of your skin, you could have this fairly common skin condition. Getting a diagnosis and beginning a treatment plan could make all the difference in healing this progressive skin disease.
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Almost everyone has had run-ins with visible pimples, pustules, or blackheads. These skin blemishes, which tend to start cropping up during puberty, are symptoms of acne vulgaris, the most common skin condition in the United States. But have you ever felt like you were experiencing the symptoms of acne, like itching, redness, inflammation, and swelling, without it ever quite erupting through your skin? These pustules, lumps, and boils that grow underneath your top skin layer can be symptoms of acne inversa — acne in reverse. Its clinical name is hidradenitis suppurativa (HS).
While about 85 percent of the population has experience with acne, hidradenitis suppurativa isn’t quite as prevalent. However, it’s not uncommon, and it occurs in women more often than it shows up in men. HS is chronic, which means it can’t be cured. But there have been significant strides forward in treatment options that can help minimize symptoms. The key to getting HS under control is an accurate diagnosis, made as early as possible — followed by a workable treatment plan.
Symptoms and Causes
The main symptoms of HS are inflamed, boil-like lumps. Outbreaks tend to happen in areas where skin rubs together, such as your armpits, inner thighs, and below your breasts. Many of these areas are dense with hair follicles, as well as oil and sweat glands, and inflammation and blockages of these glands can trigger outbreaks.
HS can spread underneath someone’s skin, which creates problems over time. “The natural course is for the inflamed bumps to release fluid or pus and then after healing, end in scar tissue,” says Morgan Rabach, a dermatologist in New York City. That scar tissue can become the site of future outbreaks and eventually cause more and more of your skin to be affected.
While HS is usually simple for a doctor to diagnose, lots of people don’t know that they have it. At first, pustules and boils that form underneath your skin might seem more like an allergic reaction than a chronic skin condition. “I have had many patients that thought they had a hygiene problem or something was wrong with what they were doing, like using the wrong skin-care product. [They] didn’t seek help from a dermatologist and remained undiagnosed for years,” says Rabach.
HS isn’t contagious. But since it commonly occurs in areas where people have sexual contact, it can cause some confusion, with some people thinking their swelling and redness may be symptoms of a sexually transmitted infection. That’s why the first person to suspect HS might be your gynecologist. “Most ob-gyns are familiar with this [condition],” says Christine Sterling, an ob-gyn in Los Angeles. Sterling notes that an ob-gyn may be able to identify and diagnose hidradenitis suppurativa and even suggest a first line of treatment. For less-straightforward cases, they may refer you to a dermatologist for other treatment strategies. Surgery to remove scar tissue from HS, for example, is typically not performed by an ob-gyn.
As with acne, hormones may be the main cause of HS. Hidradentitis suppurativa may first appear around puberty and can have a connection to the hormonal fluctuations of your menstrual cycle. Stress, sweating, and humidity can aggravate symptoms. According to a paper published in 2017, both genetic and environmental factors can influence whether a person develops this condition.
Obesity and smoking can increase your risk of HS, and 30 – 40% percent of people diagnosed with HS report a family history of the condition. According to the American Academy of Dermatology, HS is also linked to chronic pulmonary disease, mild liver disease, and diabetes, so if you have any of these health conditions, you may be more likely to have HS.
HS can symptoms can worsen over time if left untreated, and escalating symptoms can lead to feelings of self-consciousness about your appearance. The stress from this self-consciousness can further worsen your symptoms, and a destructive cycle can begin. A 2015 study showed an increased prevalence of depression and anxiety among people who have a skin condition. Getting a correct diagnosis and starting on the road to symptom management can have a huge impact on your overall health.
Diagnosis and Treatment
HS can be classified as mild, moderate, or severe. Initial treatment for the condition will depend on how many outbreaks you have had and how long you’ve been dealing with HS, and there’s no lab test to diagnose this condition. A dermatologist, a gynecologist, or even your general practitioner will probably be able to identify HS just by taking your health history and looking at the affected area. They may also want to take a sample of fluid from the area to rule out other conditions, like infected abscesses.
“The location of the bumps is an important clue,” says Rabach, “because [HS bumps] form in areas with hair follicles with many oil and sweat glands.” HS lesions have a certain “tell” that gives doctors insight into what they are looking at. Rabach adds, “The characteristic, classic lesion that defines HS is something called a double comedone, which is when you have two blackheads coming from the same bump.”
HS bumps can take some time to heal — much longer than a typical acne outbreak. After the bumps dissipate and drain, scars may linger, and pockets of scar tissue underneath your skin can join together in a tunnel shape. Even if you don’t have an active outbreak, a doctor may be able to determine whether your scars are the result of ongoing HS symptoms.
“The first line of treatment is typically antibiotic cream,” says Sterling. If a topical antibiotic isn’t effective, your health care provider might need to get more creative with solutions for your symptoms. Warm compresses and medical-grade soaps can work to control symptoms and minimize the pain and discomfort form mild HS lesions. A change in your grooming routine is also a treatment option. “Laser hair removal has been shown to decrease the severity of the disease,” Rabach said.
Steroid shots injected into the affected skin and biologic medication can be the next step in treatment. Oral antibiotics may be prescribed, but Rabach notes that their efficacy is poor. In cases where HS is severe and ongoing, some people may opt for surgery to remove scar tissue as a strategy to decrease outbreaks and improve the appearance of the skin.
If you think you might have hidradenitis suppurativa, make an appointment with a doctor who you feel comfortable with. Engaging in an open dialogue with your health practitioner will help you get diagnosed more quickly and accurately. “The best thing to do is to see a dermatologist who is used to diagnosing this condition and to talk a lot about the symptoms,” says Rabach. Since HS can worsen over time and lead to scarring, you risk more by waiting to find out what’s going on.