Whether you’ve just been diagnosed with hidradenitis suppurativa (HS) or are concerned you or someone you love might have it, you’re probably confused and scared. Take a deep breath and know this: Everyone featured on HealthCentral with a chronic condition felt like you do now. But we—and they—are here for you. On this page alone, you’ll not only discover the realities and challenges of the condition, but also the latest treatments, helpful lifestyle changes, where to find your hidradenitis suppurativa community, and all the other crucial information you need to help you not merely manage—but thrive. We’re sure you have a lot of questions…and we’ve got the answers you need.
We went to some of the nation’s top experts in hidradenitis suppurativa to bring you the most up-to-date information possible.
Iltefat H. Hamzavi, M.D.Senior Staff Physician
Jennifer L. Hsiao, M.D.Health Sciences Assistant Clinical Professor Medical Dermatology
Joslyn R. Sciacca Kirby, M.D.Director
What Is Hidradenitis Suppurativa, Anyway?
There is a lot of misinformation surrounding this chronic, inflammatory skin condition that produces painful bumps, called nodules, under the skin. Because the nodules look like acne, boils, or folliculitis (inflamed hair follicles), patients and providers often assume that’s what they are. Hidradentis suppurative (HS for short) is anything but—HS lesions form when bacteria get trapped in hair follicles, trigger an immune reaction, and plug them up.
Unlike one-and-done pimples, HS nodules keep coming back—sometimes every week, sometimes every few months—in specific places. They can show up where there’s a lot of hair, like your armpits or groin. They also can crop up under the folds of skin on your stomach and breasts. HS happens in stages, and the severity of your symptoms will coincide with whatever stage of the disease you have:
Stage 1: This is the mildest form of HS. People have solitary bumps, usually in one area.
Stage 2: If your HS is moderate, a tunnel, called a sinus tract, forms under your skin connecting a few lesions.
Stage 3: If the disease is severe, you have multiple nodules and many tunnels.
In all cases, when the nodules rupture, they don’t drain like ordinary boils. Instead, the pus and blood spread sideways deep in your skin, which is what helps form more tunnels.
Whether you have a mild case or a more severe one, the pain can be the same—the lumps feel tender at first, then burn and throb as they swell. If these lumps are in places where your skin rubs together (like your thighs), walking can be agony—and even sitting is painful if you have nodules on your butt. When they drain, the pus-filled fluid often stains your clothes and stinks. No wonder nearly half of all HS patients reported in a recent study that the condition had impacted their life in an extreme way.
Another misconception is that HS is a rare disease. It’s not, really—it affects roughly between 1% to 4% of Americans. You’re more likely to develop it if you’re a woman between the ages of 18 and 50, with people in their 20s and 30s making up the largest number of cases. About a third of HS patients are African-American or biracial.
It can sometimes take up to 10 years to get a diagnosis, and many patients go from provider to provider with a few stops at the ER and urgent care before a doctor IDs the disease. And because the disease can progress from a few sporadic nodules to many lesions and tunnels (though that’s not always the case), a delay in diagnosis can mean years of unnecessary pain and isolation. Even worse, the skin around these lesions and tunnels can break down, making them even more challenging to treat.
So, yeah, having HS sucks—which is why it’s crucial to arm yourself with knowledge so you can get a diagnosis more quickly, get the treatment you deserve, and take back your life.
What Causes HS?
There are no clear answers, though there are theories. One thing for sure, though, is that you’re definitely not to blame—this condition isn’t caused by how often you bathe, change your razor, or clean your house. It’s not caused by unsafe sex or an infection. It’s not contagious. There are factors that play a role, but again, experts aren’t sure exactly how. They include:
Genes: Research shows that approximately a third of people with HS have a first-degree family member who also has it. But just because you don’t have a family history doesn’t mean you can’t develop HS and vice versa—having a family history doesn’t mean you’ll definitely get it. Researchers think there’s not one single gene, but probably a lot of different ones (and different mutations) that contribute to a person getting the disease.
A hyperactive immune system: People with HS have an overactive immune system, which is triggered by certain things, including genetic mutations and possibly bacteria. Normally, the skin acts as a barrier to the millions of bacteria on it. If certain types of bacteria (say, staph or strep) enter the skin, they destroy the tissue around it, resulting in an infection. But in people with HS, benign bacteria may be causing the immune system to become more hyperactive. The result? Immune cells mistakenly attack these ordinary bacteria, causing inflammation.
Hair follicles: Normally, hair follicles get infected when you irritate them, either by shaving or by rubbing the skin. But while experts think hair follicles play a role in HS, it’s not as simple as the follicle gets blocked up and then bad things happen. One theory is that inflammation may be affecting the oil glands that are attached to hair follicles, changing their structure or the type of oil they produce; that makes it easier for keratin, a type of protein, to build up along the walls of the follicle and plug it up. The blockage traps the normally benign bacteria that live on your skin, and your immune system goes on the attack. As the bacteria proliferate, the inflammation only worsens.
Hormones: Androgens and estrogen, the sex hormones, may play a role in HS, but it’s complicated. It’s true that people typically develop HS as young adults, when these hormones are in high gear and producing changes throughout the body. Another clue: For some female patients, flares become worse during their periods, and doctors have noticed that the rates of HS are lower for women after menopause. But people with HS often have normal hormone levels, though medications like birth control can manage symptoms. Lots more research is needed.
Smoking and obesity: These things don’t cause HS—not every person with HS smokes or has a high BMI—but they are considered risk factors. Smokers have nearly twice the chance of developing HS than non-smokers. One reason: Nicotine and other chemicals can affect the hair follicles, making them more likely to get plugged up even if you don’t have HS. Being overweight can also aggravate HS—you have more skin folds and friction, two things that can intensify the pain from nodules.
For our "Just One More Question...!" video series, Dr. Christopher Sayed sat down with us to answer some of the most common questions he hears from his patients with hidradenitis suppurativa.
Do I Have the Symptoms of HS?
HS can be unpredictable and symptoms can vary from person to person. Sometimes mild cases progress and become worse, and other times they don’t. You can have breakouts in the exact same spot every time (or in the same general area), or they might occur in multiple places at once. The breakouts on your skin may be small and look more like blackheads, or they might be large and red like boils—until they burst and drain, when they appear more like a wound. Either way, if you’ve noticed these bumps have come back at least twice in the past six months, you may have HS.
Signs of a mild or moderate case of HS can include:
Having a single nodule that sometimes grows and comes back in the same place again and again, lasting anywhere from 7 to 15 days
Having recurrent lumps in your armpits, genitals (yes, even inside), groin area, inner thighs, butt (yes, even in your anus), or under the breasts. Sometimes they appear on the neck or behind the ears.
A burning, stinging, or itching sensation. Nodules may also feel warm, tender, and/or very painful.
Odorous pus and fluid that drains after nodules erupt, leaving a deep, painful wound.
A rope-like tunnel, called a sinus tract, under the skin that connects several lesions (in stage 2 cases).
In more severe cases:
You’ll have so many lesions that you get multiple tunnels, or sinus tracts.
After breaking open, these lesions may not heal completely and may leak pus more or less continuously.
When To Call Your Doctor or Dermatologist
If you notice any kind of pus-filled boil or a tender, red lump in your armpits, groin, genitals, or under your breasts, even if you’re not sure you’ve had something there before, see a doctor. Or book an appointment directly with a dermatologist if your insurance allows it: Dermatologists are trained to look at skin conditions, and a savvy one will be able to distinguish HS from boils caused by bacterial infections as well as other skin rashes.
How Do Doctors Diagnose HS?
There’s no lab or blood test that will diagnose the disease. Instead, providers take a detailed medical history and do a thorough skin check. Before the physical exam, your doctor will want to know about your symptoms as well as how often these outbreaks happen, how long the lesions last, where they occur, and if anyone in your family has had a similar condition.
Then the provider will examine your skin thoroughly, looking for signs of the disease: boils, blackheads, nodules, tunnels, and scars and where they occur on your body. If these breakouts don’t look like the classic signs of HS or have been there a long time, a provider may do a biopsy to rule out squamous cell cancer, which can occur in some people with severe cases of HS. A biopsy can also rule out rashes produced by other inflammatory diseases, especially IBS and Crohn’s. Patients with these GI disorders sometimes have painful red lumps on their legs and lesions near the anus.
If your dermatologist suspects you may have another chronic condition along with HS (and many patients do) or you have a high BMI, you’ll get your blood tested to check your cholesterol, triglycerides, and blood sugar. If they’re high, you may have prediabetes, type 2 diabetes, or metabolic syndrome (a cluster of risk factors that include high cholesterol levels as well as high blood pressure), and your doctor may treat that with medications along with the HS.
What Are My Treatment Options?
The goal of treatment is simple: to stop or reduce the pain and drainage and prevent the nodules from coming back—or at least lengthen the time between flares. But those goals depend on the severity of the disease. If you have HS in just one area, like the armpits or your breasts, you may be able to go into remission with medications, including topical ones, and laser surgery. If your HS is in multiple parts of your body, then the goal is to manage the pain and drainage and reduce the number of flares. But again, HS is an idiosyncratic disease, and so what works for one person may not work for another, even if both have similar-looking cases.
Dermatologists use three ty)pes of topical washes or gels—antibiotics like Cleocin HCl (clindamycin), antiseptics like Brevoxyl (benzoyl peroxide), and keratolytics like DiabetAid Anti-Itch (resorcinol)—to reduce bacteria and decrease inflammation. You might use a benzoyl peroxide wash on a daily basis to prevent flares and control the odor and an antibiotic gel to reduce inflammation on single nodules. These work best for people with mild cases of HS who have nodules in one particular place—and topicals may be all you need to control flares.
These can include a host of drugs, including antibiotics, hormonal therapy like birth control, retinoids, and anti-hyperglycemics (aka diabetes drugs that lower blood sugar like Glucophage, or metoformin). Some of these meds work best on patients who have stage 1 HS or women whose HS flares up when they’re premenstrual. And some are just used to manage outbreaks. Many HS patients have to take several systemic drugs. Options include:
While bacteria may not cause HS, they need to be reduced during acute flare-ups. A course of antibiotics, used alone like Sumycin (tetracycline), or in combination such as Cleocin HCl (clindamycin) and Rifadin (rifampin), won’t put you in remission, but it can help stabilize the disease and help manage the drainage and pain. Doxycycline is an oral antibiotic that can be used as well.
Dermatologists will often turn to androgen-blockers to control HS since hormones can make inflammation worse. These drugs work best if your flares get worse before your period or if you have irregular cycles. If you’re a guy who’s balding in the typical way (thinning on the crown along with a receding hairline) you might be a good bet for hormone therapy, too. Birth control pills as well as Aldactone (spironolactone), a blood pressure med, can put women with mild cases in remission. Men usually take Proscar (finasteride), a medication used to shrink an enlarged prostate.
About 15% of people with HS also have acne, according to the Journal of the American Academy of Dermatology. Dermatologists use retinoids in cases that don’t respond to other meds or topicals—these powerful drugs can shrink oil glands and reduce the number bacteria in both the oil glands and on the skin. They can improve HS outbreaks in some people, but are more effective on the acne.
Many patients with HS are obese (though not all), so doctors are likely to screen them to see if they’re prediabetic (or actually have the disease) and recommend an anti-hypoglycemic like Glucophage (metformin) to reduce insulin resistance. But the drug does more than that—it can actually reduce the number of nodules too. The link—high insulin levels can lead to more inflammation.
These medications are designed to target different types of proteins that fuel inflammation. People with HS often produce too much TNF-alpha, so biologics called TNF-inhibitors (like Humira) latch onto these cells. That in turn reduces inflammation and the number of flares, and it can prevent the disease from progressing. In severe cases, biologics can reduce drainage, which in turn decreases pain.
Surgery and Laser Treatments
Getting rid of the hair under your armpits or your groin can prevent HS from progressing—at least in the earlier stages of the disease. And the best way to do that is via laser. The concentrated beam of light (i.e. the laser) can zap hair follicles to minimizes hair growth. If you do this once a month for about three months, you can reduce nodules and keep outbreaks at bay with topicals.
If your lesions have formed tunnels, you’re probably a candidate for surgery, but what kind depends on the stage of the disease. If you have a single tunnel, then doctors perform something called deroofing, or opening up the tunnel to wipe out the jelly-like material in there called a biofilm. Then the tunnel heals, becoming a scar and preventing nodules from erupting there.
For multiple, interconnected tunnels in patients who have a severe case that’s not improving with medication, doctors use a laser to remove all the tissue along the tunnels. The wound is either closed or left to heal on its own. This can ease the pain of the lesions. This is a bigger operation, requiring general anesthesia and sometimes a hospital stay.
Eating fewer carbs and more protein can help reduce inflammation for everyone—and it may help you shed pounds, lowering the risk of other diseases associated with HS like heart disease and type 2 diabetes. So can eating a Mediterranean diet—one that’s rich in vegetables and fruits, lower in red meats and processed carbs—or one that’s mainly plant-based.
There hasn’t been a lot of research on the role of diet, although there were two small studies that found good effects—symptoms improved, the HS stopped progressing—when people went dairy-free or stopped eating bread and products with yeast. There’s some anecdotal evidence (mainly on social media) that avoiding nightshade plants (tomatoes, eggplants, bell peppers) may help too.
People swear by turmeric, which is an anti-inflammatory, but the evidence that it can help HS flares is purely anecdotal. But taking a zinc supplement every day if you have a mild or moderate HS may help, according to one study. That’s because zinc plays a big role in your immune system’s ability to fight off harmful substances and repair damaged cells; and too little zinc may result in lesions and slow healing.
Complications and Comorbidities of HS
Many HS patients have other chronic illnesses, leading researchers to think that hidradenitis is a systemic disease affecting the whole body, not just the skin. Another theory: HS shares some sort of defect in the immune system with other autoimmune disorders, like inflammatory bowel disease and certain types of arthritis. In those cases, the autoimmune inflammatory cells occur in the bloodstream, but they're being directed partially to the skin, partially to the gut, partially to the joints.
If you have a high BMI, you might be at risk for metabolic syndrome, type 2 diabetes, and cardiovascular disease. This may be a result of the inflammation as well as becoming more sedentary if your pain keeps you from walking or doing any kind of physical activity.
Comorbidities of HS include:
Inflammatory bowel disease (IBD)—People with HS are two to three times more likely to have this chronic condition that includes Crohn's disease and ulcerative colitis.
Metabolic syndrome—Half of all HS patients have metabolic syndrome, which is a group of risk factors including obesity, high blood pressure, high blood sugar and cholesterol that increase your chances of heart attacks, strokes, and type 2 diabetes.
Spondyloarthritis (SpA)—About 5% of people with HS also have this inflammatory joint disease that attacks the spine and produces back pain. Patients who had both conditions developed SpA roughly four years after the first symptoms of HS.
Polycystic ovary syndrome (PCOS)—Roughly 9% of HS patients have this hormonal disorder that causes women to produce higher-than-normal__text in bold__ amounts of male sex hormones (testosterone and other androgens).
Complications of HS include:
Squamous cell carcinoma, the second most common type of skin cancer—4% percent of HS patients go on to develop this type of skin cancer, maybe because the constant inflammation in lesions and nodules produces changes in your skin at a cellular level.
Anxiety and depression—Understandably, about a third of HS patients have anxiety and 35% suffer from depression.
Suicide—Roughly 10% of HS patients have had thoughts of killing themselves or attempted it. And a 2017 study in the Journal of Investigative Dermatology found that people with HS were twice as likely to die of suicide.
Well, truthfully, there’s nothing that can prevent hidradenitis because no one knows what causes it in the first place. But these strategies can help you avoid complications, and may improve symptoms and lessen the pain.
Stop smoking. Smokers were twice as likely to have HS—probably because of nicotine, which can affect hair follicles—and the incidence was highest among those who were in their 30s, African-American, female, and obese, according to a study in the British Journal of Dermatology. While quitting may not do much to reduce flares, it certainly can’t hurt—it will lower your odds of developing heart disease, which is also high with HS because it is a known comorbidity.
Lose weight (or maintain a healthy one). If you’re obese, odds are your HS flares may be worse. While that may have something to do with the role body fat plays in inflammation, being overweight means more skin folds, more moisture on the skin, and more places where your skin rubs against itself—all factors that slow down healing and up the pain. There’s some evidence that losing 15% of your weight (so 30 pounds if you weigh 200) could decrease your symptoms by about a third—and significantly reduce the number of places on the body where nodules appear.
Eat more fruits and vegetables—and less sugar. Diet is the best way to lose weight, so to achieve a lower BMI, stay away from empty calories (like soda and sugary snacks), processed foods (like cold cuts, white bread, and chips), and fatty foods. In fact, avoid sugar and high glycemic foods—foods that are white, like pasta, bread, rice, and potatoes—that your body can turn into sugar quickly. That raises insulin, which in turn fuels inflammation.
Move. You know what an overall health-booster exercise is, but you also know that sweat and the friction caused by clothing or your skin rubbing against itself can make pain and draining nodules worse. That’s why walking and swimming are two great choices (you sweat less, for one) that are gentle on your joints as are yoga and tai chi, which also are good for your mind (and soul).
What's Life Like for People With HS?
One word: heartbreaking. During outbreaks, your day-to-day life means managing the pain and odor as fluids drain from tunnels and nodules. On top of that, you're figuring out everything from what to wear to what to say about your condition and how you're feeling. And feeling like you have to constantly explain yourself is exhausting. While it may seem overwhelming now, especially if you’ve just been diagnosed, find a doctor who has your back and will work with you to reduce the flares so you can get your life back. It’s possible.
It’s hard not to feel depressed or anxious when you have HS—or to get down about the chances of having a “normal” life. The best way to deal?
Find your tribe. No one knows what you’re going through like someone who’s been there before. That’s why talking to someone with HS can help. There are online support groups and those IRL in certain cities (Detroit, New York City, and Atlanta, to name a few) as well as groups, private and public, on Facebook.
Talk to others. Joining an advocacy group can help you channel difficult feelings into something more positive, like change and awareness. Or simply take the opportunity to open up with family and friends about what your life is like, and let them help you when you can’t manage.
Talk to a therapist. Finding someone sympathetic who can suggest coping skills and acceptance will help you feel more in control of your emotions—and less depressed and anxious.
Being intimate with someone is rough when you have oozing, painful boils and tunnels in all the places that are supposed to be erogenous zones—your genitals, breasts, and butt. And some meds might send your libido plummeting, which also doesn’t help. You’re not alone though. Both men and women suffer from sexual distress, though you’re more likely to feel more self-conscious if you’re female (what else is new?) and single. But people with HS do have satisfying sexual relations and partners. What helps:
Be upfront. Explain the condition to any potential partners, and let them ask you as many questions as possible. And don’t assume you know what they’re thinking—ask if you aren’t sure.
Find satisfaction other ways. You may not feel like having sex during a flare, but sex doesn’t necessarily have to include intercourse—there are other things you can do to express your love. Snuggling on the sofa makes intimacy grow, as can having a nice meal together or binge-watching your favorite shows.
Change positions. If you’re self-conscious about the scars or lesions on your breasts or around your genitals, try spooning from behind or doing it doggie-style.
Being pregnant is tough enough without worrying about your skin or having to change up your meds (and routine). But take comfort that your flares aren’t likely to get worse (only 8% of women’s did) and there’s a 1 in 5 chance that your HS may improve, according to a study in the Journal of the American Academy of Dermatology. But it may be more important to discuss your meds with your doctor if you’re planning to become pregnant or as soon as you suspect you are, as biologics, hormones, and retinoids aren’t the safest choices for pregnant moms.
Where Can I Find My HS Community?
We can’t stress this enough—HS can make you feel isolated and alone, so you really need people who really know what you’re dealing with, even if you’re just posting comments online. Find them here:
Top HS Instagrammers
Selina Ferragamo, @hidradenitis.selinaFollow because: If ever there was a meme that spoke to your HS-soul, well, you’d find it on Selina’s page. Sprinkled throughout her hilarious and completely relatable feed are small life updates about her own HS, to remind you that there’s a face behind all that hilarity. Now, back to your regularly scheduled meme.
Sara Tanner, @sara.relivingFollow because: She’s a young mom on a journey to become healthier and more fit, which, in turn, she knows could benefit her HS. She also squashes stigma about HS along the way, reminding everyone not to judge a book by its slightly bumpier cover.
Cheyenne Brooke, @completely_cheyFollow because: We really couldn’t say it better than her Instagram profile: night owl, PCOS fighter, mental health advocate, cosmetology student, living with HS, and dog mom. You’ll get a taste of all these things on her feed, including her passion for being brave and “out” about her condition.
Top HS Support Groups
HS Awareness No More Silence on Instagram. Self-proclaimed warriors with battle scars, this is where you’ll find all your fellow HS’ers on Instagram. Hear their stories, reap the benefits of their been-there-tried-that tips, and nod along with their HS-life woes. Share your own story and you could be featured, too! Just be sure to tag them.
Hidradenitis Suppurativa Support Group on Facebook. This is a private group on Facebook, and for good reason — it’s a place for you to go where only people with HS will know your name and there’s no chance in someone from your usual feed finding out about your condition or detailed questions. The five admins, all affected by HS, make themselves available by private Facebook message in case you need to talk on an even more private level.
Hidradenitis Suppurativa Warriors on Facebook. With nearly 16,000 members and roughly 25 new posts daily, this private Facebook group will have your back with support, a safe place to share news and info, ask questions, and provide the strength you need to tap into your own inner HS warrior.
Top HS Non-Profits and Organizations
Hidradenitis Suppurativa Foundation. With a mission to improve the lives of those with HS through education, advocacy, and research, HSF is the place to find clinics and doctors who can help you. Their support goes beyond endless scrolls of treatments, new research, and general education (though, they have that, too), and dives deeper into the effects that HS has on your mental health, and how you can get involved in speaking up about this disease.
HSAwareness.org. While there’s yet to be a sole podcast dedicated to HS (hint, hint, nudge, nudge), you can find a sprinkling of podcasts about different aspects of HS curated here, along with videos that tug at your heart strings.
Hope for HS. Started by people with HS and those who love them, this non-profit is run strictly by volunteers. Here you can find clinical trials and research news in layman’s terms, as well as support groups online and in various cities, including Miami, Richmond, and Detroit. They truly are here to give you hope and show you that you’re not alone.