Among the many possible explanations for your skin woes, a little-known condition called hidradenitis suppurativa (HS) should be on your radar. This skin disorder isn’t super common—an estimated three million Americans (about one percent of the population) are living with HS. Of those, less than one in 10 has received a medical diagnosis, according to research in the American Journal of Epidemiology. Lack of awareness, coupled with symptoms that can masquerade as other disorders, makes it hard to get help for HS. “There is frequently a delay in diagnosis with this condition,” says Dr. George Han, MD, PhD, an associate professor and director of research in the department of dermatology at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and Lenox Hill Hospital in New York City. “In part, it’s because people who experience symptoms of hidradenitis suppurativa think it’s a single episode—oh, I have a cyst in this area—rather than an ongoing condition, so treatment is fragmented.” That delay in diagnosis can allow the condition to progress, which in turn makes it trickier to treat. What does that mean for you? Sure, there are many more common things that could cause the red pimple-like bumps under your skin. But knowledge is power, and you can play a proactive role in managing your health by learning the facts about hidradenitis suppurativa.
What Is Hidradenitis Suppurativa?
If you’re looking at those two words—hidradenitis suppurativa—and wondering which part of Latin class you spaced out in, here’s the deal: This chronic skin condition, also referred to as acne inversa, is characterized by painful abscesses that occur below the skin surface, leading to the appearance of raised red bumps. “It’s called acne inversa because it can look like severe acne in inverse areas, meaning the folds of your skin,” says Dr. Alok Vij, MD, a dermatologist at Cleveland Clinic in Ohio. “In fact, people with HS often have a history of acne as a teenager.” Hidradenitis suppurativa differs from acne, though—not only in appearance but also location. “It occurs under your armpits, or in your private areas or under the belly fold,” says Dr. Han, whereas acne or other skin conditions like psoriasis appear most often across the body or where skin covers a joint, like your elbows or knees. The visual presentation of HS doesn’t tell the whole story. The cyst-like bumps you see on the surface are really deep pockets below the skin that fill with pus. Eventually, these cysts burst, releasing foul-smelling fluid and creating tunnels under the skin that connect one cyst to the next. Known as double-ended comedones, “it’s a defining feature of HS and looks like two blackheads that connect under skin,” says Dr. Han. “Over time, this leads to scarring.”
What Causes It?
So how does hidradenitis suppurativa begin? The immediate cause is the clogging and inflammation of hair follicles and sweat glands, according to the American Academy of Dermatology Association. “Once the hair follicle gets blocked, oils that would normally be secreted get stuck under skin,” says Dr. Vij. This leads to increased pressure as pus and fluid build up, creating a cyst. When the cyst bursts, bacteria enters and breeds inside the follicle, leading to more inflammation. As for what causes these follicles to clog in the first place, the answer is less clear. Experts still aren’t sure why HS develops in some people and not others. Genetics, hormones and environmental influences are all believed to play a role, per the National Institutes of Health. The condition is more than twice as likely to occur in women as men, according to a meta-analysis in the Journal of the American Academy of Dermatology, which looked at data from 48 million Americans. And it’s two and a half times more likely to occur in Black patients than white patients. While there is no specific age when hidradenitis suppurativa strikes, the condition typically first appears in younger adults, says Dr. Han. “It is most common to see it in people who are in their 20s and 30s,” he says. “But there can be a wide range of ages, from teenagers to people who get it much later in life.” A handful of factors raise your risk of developing HS, including being overweight, having a family history of the condition and smoking. In one recent study, researchers at the Donald and Barbara Zucker School of Medicine at Hofstra University in New York found that smoking doubled a person’s chances of developing HS.
Symptoms of Hidradenitis Suppurativa
By now, you’re probably wondering if those bumps on your skin could indeed be HS. Currently, though, there is no single test for the disease. “There are no biomarkers for diagnosing HS,” says Dr. Vij. Instead, your doctor will examine your skin appearance while asking you questions about your family’s medical history and your own. What your provider will look for: one or several inflamed cysts clustered in areas where skin comes in contact with skin. Under the breasts and armpits, in the skin folds around your genital area and between your butt cheeks are all areas where HS develops. If that sounds kind of … intimate—it is, and it’s precisely one reason why so few people wind up with an accurate diagnosis. “Sometimes, people are embarrassed,” says Dr. Han. “Other times, people get cysts in their groins or private areas and head to urgent care because they think it’s an isolated incident.” There, they may be given antibiotics by the emergency care doctor and sent on their way. “The challenge is that people don’t link the episodes together,” he adds. So are your skin cysts of the HS variety? These are a few symptoms to look out for, per the Cleveland Clinic:
Red, tender, swollen patches of skinPimple- or boil-like bumps that appear without an obvious causeBlackheads that develop in pairsCysts that grow, fill with pus, then burst openPus with foul odorScarring due to tunnels beneath the skin surface
Hidradenitis Suppurativa Stages
While those are hallmark signs of hidradenitis suppurativa, the severity of the disease varies from one person to the next. Aiming to establish consistency in how doctors approach HS treatment, dermatologists sometimes use what’s known as the Hurley staging system. “The Hurley system is based on evidence of multiple areas of involvement,” says Dr. Vij. It is broken up into three distinct stages corresponding to mild, moderate or severe HS. (Many doctors prefer to use the descriptive terms instead of stages since “it’s an easier concept for patients to understand,” Dr. Vij says.) Whichever way you refer to it, here’s how the stages of hidradenitis suppurativa break down:
Stage I (mild): One or more abscesses. No scarring or tunneling. Skin nodules may resolve and then return.Stage II (moderate): Multiple abscesses. Nodules are connected beneath the skin by tunnels. Mild scarring on skin surface.Stage III (severe): Significant clusters of abscesses. Scarring on skin surface; widespread tunneling below the surface. While anyone can develop severe HS, research has found that people who progress relatively quickly from stage I to stage II HS (within three years) are more likely to have their disease advance to stage III.
Hidradenitis Suppurativa Treatment
The good news with hidradenitis suppurativa is that treatment has made progress in recent years. “We are finally getting evidence that some medications can be really helpful with this condition,” says Dr. Vij. “We now have an FDA-approved medication specifically for HS—an immunosuppressant that slows down the immune system reactions behind symptoms of HS.” The drug, adalimumab (Humira), works by blocking the production of an inflammatory protein in the body called tumor necrosis factor (TNF) alpha, which contributes to the development of abscesses in the skin. It is intended for people with moderate to severe forms of HS. For those with milder symptoms, treatments range from topical washes to antibacterial cleansers. “These are similar to what you might use to treat acne,” says Dr. Vij. Depending on the severity of your symptoms, these are some treatment options you might discuss with your doctor:
Antibacterial washes: Benzoyl peroxide is a cleanser often used together with antibiotics to open up clogged pores and kill bacteria on the skin surface in HS.Antibiotics: Topical ointments or pills such as clindamycin, doxycycline and others are used to treat infection.Steroids: These injections or oral meds can offer short-term relief from inflammation.Hormone therapy: Estrogen-containing oral contraceptives are sometimes used to minimize symptoms in women.Retinoids: These products help control the speed of skin turnover with HS.
Hidradenitis Suppurativa Surgery
For some people, surgery might relieve HS pain. “Surgical treatments work better for someone with limited disease—for example, a cluster of boils in the underarm,” says Dr. Vij. “When you remove the affected skin, it might be curative for that area. But it doesn’t cure the disease itself, so the risk is that it just develops in another area of the body.” One study in BMC Dermatology found that 81% of people who had surgery for HS did not have a recurrence of symptoms while in 19%, HS returned after the surgical procedure. Also, he adds, the location of nodules is important, since some areas are easier to operate on and will have fewer potential complications. If you’re considering surgery, there are a few approaches, per the Mayo Clinic, that your doctor will discuss with you:
Mild HS: Incisions and drainage may be used. Here your doctor basically slices into the nodules and drains the pus from inside. It will relieve pain in the short-term but new nodules can form and the problem will return.Moderate to Severe HS: Deroofing or excision may be used. In deroofing, your doctor will cut away the skin that covers the tunnels below and use a laser to remove the tunnels themselves; in excision, your doctor will cut away the nodules, tunnels and surrounding tissue. Excision is the most aggressive approach to treating HS and may require a skin graft to help the affected area heal.
Hidradenitis Suppurativa Home Treatment
Given the complexity of the condition, managing it almost certainly requires medical intervention from your doctor. Still, “lifestyle changes can be helpful,” says Dr. Han. For instance, “smokers who quit may feel better because smoking increases inflammation in the body, and that inflammation contributes to HS symptoms.” What’s more, there are home remedies that can help ease the pain of hidradenitis suppurativa symptoms temporarily.
Aloe vera: Cleveland Clinic recommends using aloe vera moisturizers to soothe irritated or inflamed skin.Warm compresses: Pressing a warm, damp washcloth against the cysts can help them drain; showering in warm water may have a similar effect.Zinc supplements: A study in the American Journal of Clinical Dermatology found that people with HS frequently have lower levels of zinc; supplementing may help with symptoms, but too-high levels of zinc cause other health complications, so talk with your doctor first.
Hidradenitis Suppurativa Diet
Being overweight is a risk factor for HS, so lowering the numbers on the scale may bring you some relief (although it will not cure the disease). “It’s not always a straightforward correlation,” says Dr. Han. “Some of the toughest cases I’ve seen have been in skinny people, so it can affect anyone, but often heavier people who lose weight say symptoms get better.” Beyond shedding pounds, the foods in your diet may also play a role in helping manage HS symptoms. One recent survey found that 76% of people with this condition had eliminated at least one food from their diet in an effort to control symptoms. The challenge is that there is no proven diet to improve HS, let alone cure it. So while eliminating certain foods might anecdotally make one person feel better, the science is limited on whether such changes work for everyone. What experts do know: HS is driven by inflammation in the body, so foods with anti-inflammatory benefits may help. One of the easiest ways to include anti-inflammatory foods in your meals is by following the so-called Mediterranean diet: fresh fruits and vegetables, fish, whole grains and healthy fats like olive oil. A study in the journal Nutrients found a lower prevalence of hidradenitis suppurativa among those who followed a Mediterranean diet, and a much higher prevalence of severe HS symptoms among those who did not eat the foods included in the Med diet.
Is There a Cure for HS?
While scientists know way more about this condition than they did 20 years ago, as of now, there is still no cure. But that’s no cause for panic about those bumps on your skin. Remember, given that just one percent of the people in the U.S. have hidradenitis suppurativa, the odds of it being the source of your skin woes is slim. And if HS does turn out to be the culprit, by controlling symptoms through medication and lifestyle modifications, you can keep living your life with minimal disruption. “As doctors, we want patients to know that HS is not their fault,” says Dr. Han. “There is no reason to be embarrassed and most importantly, there are treatments that can help.” Want to drop some pounds quickly and safely? Here are 16 Actually Doable Ways to Lose Weight.
Sources
George Han, M.D., Ph.D., associate professor and director of research in the department of dermatology at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and Lenox Hill Hospital in New York CityAlok Vij, M.D., dermatologist at Cleveland Clinic in OhioReumatologia: “Hidradenitis suppurativa: Known and unknown disease.”Journal of the American Academy of Dermatology: “Incidence of hidradenitis suppurativa in the United States: A sex- and age-adjusted population analysis.”American Journal of Epidemiology: “Hidradenitis Suppurativa: Number of Diagnosed Patients, Demographic Characteristics, and Treatment Patterns in the United States.”Cleveland Clinic: “Hidradenitis Suppurativa.”British Journal of Dermatology: “Incidence of hidradenitis suppurativa among tobacco smokers: a population-based retrospective analysis in the U.S.A.”National Institutes of Health: “Hidradenitis Suppurativa (HS) Basics.”Journal of the America Medical Association - Dermatology: “A Novel Severity Assessment Scoring System for Hidradenitis Suppurativa.”Dermatology: “Hurley III Hidradenitis Suppurativa Has an Aggressive Disease Course.”Indian Journal of Dermatology: “Hidradenitis Suppurativa: Inside and Out.“Annals of Dermatology: “Clindamycin Mono-Therapy of Hidradenitis Suppurativa Patients: A Single-Center Retrospective Study.”International Journal of Dermatology: “Treatment of hidradenitis suppurativa with tetracycline, doxycycline, or lymecycline: a prospective study.”BMC Dermatology: “A review of wide surgical excision of hidradenitis suppurativa.”Mayo Clinic: “Surgery for Hidradenitis Suppurativa.”Cleveland Clinic: “Hidradenitis Suppurativa Home Treatments and Natural Remedies.”American Journal of Clinical Dermatology: “Serum Zinc Levels in Hidradenitis Suppurativa: A Case–Control Study.”F1000 Research: “The most recent advances in understanding and managing hidradenitis suppurativa.”
Nutrients: “Role of Nutrition and Adherence to the Mediterranean Diet in the Multidisciplinary Approach of Hidradenitis Suppurativa: Evaluation of Nutritional Status and Its Association with Severity of Disease.”
