Everything You Need to Know About Hidradenitis Suppurativa
This chronic skin condition is beyond your average breakout. Here, dermatologists break down hidradenitis suppurativa symptoms, treatment, and more.
Whether your T-zone tends to be home to stubborn blackheads or you haven’t dealt with a pesky pustule since high school (lucky), you know a blemish when you see one. Turns out that not all acne is that easily recognizable, especially since some bumps never come through your skin's surface — as is the case with acne inversa or hidradenitis suppurativa.
Affecting anywhere from .03 to 4 percent of the population worldwide, hidradenitis suppurativa is a chronic skin disease characterized by painful, boil-like lumps that form beneath the skin. While it can sometimes be mistaken for other conditions, such as acne, cysts, or herpes, HS has no cure and requires a dedicated and careful treatment approach by a dermatologist to get it under control. Ahead, experts weigh in on everything you need to know about this serious skin issue.
What Is Hidradenitis Suppurativa?
The name is a mouthful, and the condition in and of itself is no walk in the park, either.
"Hidradenitis suppurativa is a chronic skin condition that belongs to a group of disorders called the follicular occlusion tetrad," explains Ife J. Rodney, M.D., a board-certified dermatologist and founder of Eternal Dermatology in Fulton, MD. "In these disorders, blockage and rupture of the hair follicle causes intense inflammation deeper in the skin." In other words, the blocked hair follicles trap bacteria, leading to inflammation and rupture.
In the case of HS (vs. acne conglobate and dissecting cellulitis — other follicular occlusion tetrad disorders), this manifests as painful lumps and boils, explains Dr. Rodney. While it might sound similar to a common ingrown hair, HS involves much more severe inflammation and often has arbitrary flare-ups, whereas ingrown hairs can usually be explained by shaving or waxing, she explains. (BTW, if you do have an ingrown hair, resist the urge to pick at it and follow these removal guidelines instead.)
Hidradenitis Suppurativa Symptoms
The primary signs of the condition are inflamed, red bumps under the skin. They can be very painful and tend to show up in areas that are hairy and/or where the skin is folded and rubs: under the breasts, in the armpits, around the genitals, on the neck, and on the inner thigh, explains Dr. Rodney. Lots of these spots are also loaded with sweat glands that can become inflamed, thereby adding to the swelling, says Lucy Chen, M.D., a board-certified dermatologist at Riverchase Dermatology in Miami. (ICYDK, skin tags typically occur where the skin is creased or folded as well.)
Sometimes, the nodules will clump together and grow even bigger, forming large abscesses (read: pockets of puss) that tunnel under the skin and can become infected with bacteria, adds Dr. Rodney. Specifically, HS lumps can spread under the patient’s skin, not from person to person.
Other specific HS symptoms include clusters of clogged hair follicles that almost look like blackheads. "In more severe cases, the clogged hair follicles can become so inflamed that they burst, leaving wounds that look like tiny holes throughout the skin," says Dr. Chen. "These holes can [also] become infected, which can lead to the open lesions leaking foul-smelling pus."
Adding insult to injury? No matter how HS shows up, the condition is very slow to heal and prone to scarring, she adds. And even if a boil does go away, it can often return again in the same place; the lesions tend to appear in the same spot because once they rupture under the skin, part of the skin never fully heals, leaving the door open for HS to crop up again, explains Dr. Rodney.
Hidradenitis Suppurativa Causes
Unfortunately, there's no specific reason why the hair follicles become blocked in the first place, says Dr. Chen. And while the exact cause of HS is unknown, genetics — as with so many skin conditions (looking at you, keratosis pilaris) — may play a role. "If you have HS, you likely have a relative who has it as well," notes Dr. Rodney. In fact, about one-third of patients report having a family history of HS, according to a 2016 review.
Hormonal changes are also a potential culprit, confirm experts. HS usually manifests towards the end or after puberty and, according to another 2016 review, has been associated with hormonal fluctuations (such as a rise and fall of sex hormones such as testosterone) in women's menstrual cycles. To that point, Dr. Chen notes that women are more likely to develop the condition than men. (BTW, you can blame hormones for other types of cystic acne as well — gee, thanks.)
"Data also suggests that HS may be more common in those with darker skin, specifically African Americans and that this population may also have a more severe presentation of the condition," says Dr. Rodney. (This likely has to do with genetics as well as socioeconomic differences that make it more challenging for BIPOC patients to receive effective medical care and treatment, according to research.)
Both doctors quoted in this story also underscore the fact that HS is not in any way caused by or a function of poor personal hygiene, nor is it a contagious condition that can spread to others. These details are especially important given the emotional component of dealing with the disease and stigma often associated with HS.
"HS not only affects the body physically but it can also lead to a decrease in emotional well-being and quality of life," shares Dr. Chen. The recurrence of large, inflamed lumps can lead to self-consciousness, social isolation, and depression — so much so that a recent 2020 study found "significant psychiatric comorbidity in HS and of a strong emotional impact of the disease.
The fact that HS is often (albeit incorrectly) associated with poor hygiene can also cause feelings of shame, while excess scarring as the condition heals can increase self-consciousness amongst many patients, adds Dr. Chen.
Hidradenitis Suppurativa Treatment
First and foremost, get a doctor involved. This is NOT a condition that can be addressed on your own. “For those suffering from HS, it's important to make an appointment with a dermatologist to be properly diagnosed and treated," advises Dr. Chen. Doctors will review your medical history, ask about your symptoms, and examine your skin, according to the Mayo Clinic. And while they might send a sample of pus to the lab to rule out an infection, there’s no official diagnostic lab test for HS.
Once your doc feels confident that you have hidradenitis suppurativa, it’s time to talk treatment — and, unfortunately, this isn’t very cut-and-dry either. "Since there's no cure, the type of treatment should be based on the specific symptoms that are presented in each person," says Dr. Chen.
In mild cases of acne inversa where the boils haven't scarred or tunneled under the skin a dermatologist may suggest over-the-counter pain medications such as Advil or Tylenol to keep the aching at bay coupled with an over-the-counter gentle, fragrance-free wash such as Cetaphil Ultra Gentle Body Wash (Buy It, $7, walmart.com) to help try to unclog the hair follicles, says Dr. Chen. In more severe cases where the boils are infected, extremely painful, and/or connected under the skin, treatment may include prescription topical or oral antibiotics and monthly steroid injections into the lumps to fight inflammation, notes Dr. Rodney. Your derm might also write an Rx for Spironolactone, a medication that can lower the levels of androgens (sex hormones, such as testosterone) and, in turn, potentially lessen HS, she adds. (Spironolactone was originally designed as a blood pressure medication but since it can block androgen receptors, it’s often used to help with hormonal acne as well.)
In the most extreme cases of hidradenitis suppurativa, surgical intervention may be required to remove an abscess and drain pus, says Dr. Rodney. How long it takes for HS to heal depends on a variety of factors, including how severe the case is and how quickly you can start treating it, though notes that individual lesions or bumps can take anywhere from a week to a few weeks to heal, on average, she adds.
Aside from those more traditional treatments, laser hair removal can also help as it destroys the hair follicle at the root, greatly reducing the risk of it clogging, says Dr. Rodney. Killing the hair follicle can also minimize the potential for bacteria to enter the skin through something such as shaving, notes Dr. Chen. (The fewer bacteria in the area, the less likely the HS lesions are to get infected.) And while it's not an FDA-approved treatment for HS, Botox injections can reduce sweating in certain areas, which may help soothe inflammation and reduce the likelihood of flare-ups, says Dr. Rodney.
If you think you could be dealing with hidradenitis suppurativa or acne inversa, schedule an appointment with your derm, ASAP. The sooner you get an accurate diagnosis and specific treatment plan, the better.