What Is Hidradenitis Suppurativa? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Hidradenitis suppurativa (HS), also called acne inversa, is a chronic inflammatory skin disease. People with HS have lesions which can include painful, deep-seated nodules and abscesses that can cause permanent scarring, says Rita O. Pichardo, MD, a dermatologist at Wake Forest Baptist Health in Winston Salem, North Carolina. “It primarily occurs in places where skin rubs on skin, which are called intertriginous regions,” she says.

There can be periods of worsening (called flares) or improvement, but there’s usually some evidence of the condition at all times, says Dr. Pichardo.

A painful nodule can form in that area (most often in the armpit, groin area, buttocks, or inner thigh) that looks like a cyst, boil, or deep pimple.

As these bumps or nodules grow, they join together and fill up with fluid, becoming abscesses. When the mass breaks open, blood and pus is expelled. This fluid has a bad odor and can cause wet spots on clothing. The ongoing drainage that occurs with HS can be a tipoff that you have the disease. And as this process repeats, tunnels can form under the skin and cause permanent scarring.

Blackhead-like spots (often appearing in twos) can form in advanced stages. These may heal and skin may clear for a while, but then new breakouts reappear in the same area.

The exact cause for hidradenitis suppurativa is unknown, but it’s thought to be multifactorial, says Katherine L. DeNiro, MD, a dermatologist and acting assistant professor of medicine at UW Medicine in Seattle.

• Genetics Having a family member with HS can increase the likelihood that a person will develop the disease.
• Smoking Smoking seems to be a risk factor.
• Hormonal Factors These play a role, as women are more likely to have HS than men.
• Obesity Research links HS with being overweight as well as diseases that are related to obesity, such as diabetes and hypertension.

“That being said, there are plenty of people with develop HS and we don’t know why; they don’t have any of those risk factors. There’s still a great deal we still need to learn about what causes HS,” says Dr. DeNiro.

On average, people have HS about eight years before they are given the correct diagnosis, says DeNiro. “This includes people who are staying home and suffering in silence or have seen a provider but haven’t been correctly diagnosed yet,” she notes.

Diagnosis can be delayed for a few reasons, says Pichardo. “It can be hard to spot at first, depending on the location in the body. Some patients are embarrassed about it and reluctant to talk to anybody — their friends or family or even a healthcare professional,” she says.

Some patients and medical providers may think the HS is something else, like an ingrown hair, folliculitis, or an acne-type rash, says Pichardo. “It’s important to seek treatment early and for physicians to recognize this condition to minimize the chances of scarring and other complications,” she adds.

The first way HS is diagnosed is through the type of lesions, which are inflammatory pustules, boils, or abscesses under the skin, Pichardo says. “They are bilateral which means on both sides of the body.”

The pustules are commonly found in certain areas of the body, although those areas are different for women and men, says Pichardo. “Usually for women these can appear under the arms, under the breasts, in the groin and pubic area, and in the inner thighs. In men, it’s mainly in underarms, groin area, and in the anal area.”

The most common way to assess the severity of HS is called the Hurley staging method:

Hurley Stage 1: Less Severe Disease There are isolated nodules, bumps, or abscesses with minimal or no scarring.

Hurley Stage 2 : Moderate Disease At this stage, there are widely separated nodules or abscesses that are connected to each other in what are called sinus tracts, which are like channels under the skin that connect one lesion with another and cause scarring, says Pichardo. There can be some scarring within a region of the body in this stage.

Hurley Stage 3: Severe Disease There are multiple or extensive sinus tracts, abscesses, and scarring affecting a whole area of the body at this stage.

Prognosis of Hidradenitis Suppurativa

Because these lesions are so painful, this is a disease that negatively affects quality of life, says Pichardo. “People with HS can be embarrassed about the lesions because of the way they look and smell,” she says.

HS usually lasts throughout a person’s lifetime, says Pichardo.

Medication Options

There are different factors that cause HS, and because of that, treatment can be very complex, says Pichardo. “Even with treatment, our patients can flare but the goal is that these flares last a shorter time and they won’t occur as often,” she says.

For all stages of HS, lifestyle modifications are recommended. These include not smoking, trying to achieve a healthy weight, and dietary changes, says Pichardo.

The treatment plan for HS can include medication and surgery, and is determined by the type and stage of the disease, says Pichardo. “Although there is currently no ‘ideal treatment,’ the best possible outcomes are achieved when patients and their doctor work together as a team to manage HS,” she says.

• Topical antibiotics such as clindamycin are often used first. These can help treat infection of the nodules, reduce inflammation, and help prevent new nodules from forming.
• Oral (systemic) antibiotics such as tetracycline or doxycycline may be used in mild HS, and the antibiotics rifampin and clindamycin maybe used in later stages.
• Hormonal agents such as birth control pills or spironolactone may be used in women.
• Metformin can be used to help control flares and manage HS at any stage.
• Topical resorcinol is a topical chemical peeling agent with may reduce inflammation during a flare.
• Biologic agents may be used in severe stage 2 or stage 3 HS. Adalimumab (Humira), a tumor necrosis factor alpha inhibitor, is the first biologic agent to be approved to treat moderate and severe HS. Infliximab (Remicade) and anakinra (Kineret) may be used to reduce symptoms and inflammation.
• Oral retinoids including acitretin, isotretinoin, and alitretinoin may be used to treat HS but should not be used with tetracycline.

Depending on your symptoms, your doctor may also prescribe medication for pain management, mental health, and wound care.

• Steroid injections may be used to help reduce pain and inflammation in mild HS lesions during a flare.
• Laser hair removal is sometimes used on mild HS. Reducing the amount of hair on the area impacted by HS can reduce the number of nodules.
• Deroofing is an option for people whose HS recurs in the same location on the body over and over. The skin covering a sinus tract or abscess is removed and the skin is left open to heal.
• Wide excision is when an HS lesion, such as a tunnel, is removed. This surgery leaves a long, wide and open wound and usually reserved for more severe Hurley stage 2 or Hurley stage 3.
• Laser surgery can be used to treat HS but the disease must be controlled for a period of time before the procedure. It takes several months for the skin to heal from laser surgery.
• Botulinum toxin or Botox, is approved to treat excessive sweating. This can help reduce the number of infections.
• Incision and drainage is a procedure in which a painful abscess is opened and drained. Although this may help with pain relief in the short term, it’s not considered an effective treatment for HS because the sores come back again, notes Mayo Clinic.

  

Wound Care for Hidradenitis Suppurativa

Discuss wound care with your doctor because some aspects of care can be different depending on how severe the wound is, how deep it is, and whether it is wet or dry.

• Gentle cleaners should be used to clean the skin, and the wound should be cleaned every time the dressing is changed. Avoid harsh soaps that could irritate the skin or wound.
• Antiseptics, such as silver and iodine, are usually applied after cleaning in order to kill bacteria.
• Dressing to cover the wound can help keep the wound clean and reduce the risk of infection.

Alternative and Complementary Therapies

Dietary Recommendations There may be certain foods can make HS worse, says Pichardo. “I recommend that my patients avoid dairy products. For example, we try to substitute cow’s milk with nondairy alternatives, such as almond milk,” she says.

An anti-inflammatory diet that limits red meat and processed foods can be helpful in HS as well, she says.

Home Remedies Before trying any remedy, you should check in with you doctor because recommendations may vary according to the stage of HS and whether the disease is flaring. These remedies should not replace the medications or procedures your doctor prescribes.

Pichardo does recommend a few home remedies for her patients with HS.

Turmeric There is anecdotal evidence for taking this as a supplement, says Pichardo. Turmeric can be used in preparing food or taken as a supplement and can have anti-inflammatory properties.

Prevention of Hidradenitis Suppurativa

There are ways to potentially decrease the risk of developing HS or lessen the symptoms — these include not smoking and maintaining a healthy weight.

To potentially reduce the severity of HS, wear loose-fitting clothes, take warm baths, don’t shave the affected areas the body, and use antibacterial soap on affected areas.

Learn More About Treatment Options for Hidradenitis Suppurativa

Cellulitis or Sepsis Infection is relatively rare in HS, but it can happen, says DeNiro. When infection happens in the skin, it’s called cellulitis, and sepsis is when the infection is in the blood.

Damage to the Lymphatics If the inflammation is deep enough, it can injure the lymphatics, which are the vessels that carry fluid to the skin. This can cause the skin to thicken and harden and stay that way.

Anemia Too much inflammation in the body can inhibit the production of red blood cells and cause anemia.

Skin Cancer In rare cases, if hidradenitis suppurativa goes untreated for years and years, it can lead to skin cancer.

HS seems to be becoming more prevalent, but we’re not really sure why, says DeNiro. “It’s really been a neglected disease. It was thought to be pretty rare in the past but now we’re learning that’s it’s not really that rare, it’s just that a lot of people didn’t go the doctor about it,” she says.

An increased prevalence of HS could also be due to an increase of some of the risk factors in the population, such as obesity and diabetes, she says.

It’s estimated that about 1 in 100 people have hidradenitis suppurativa, she says.

It's most common for people to get HS after puberty in the teen years or early twenties, but it can be diagnosed in patients as young as 9 years old or in their sixties — but those are the extremes, says Pichardo.

It’s an ongoing area of research to find out if different skin colors respond to the current treatments we have in the same way, says DeNiro. “We think that they do for most therapies. In the case of laser treatments used in HS, it’s important to consider skin color when selecting what type of laser to use." Some lasers work better on skin of color than others, she says.

Having HS can increase the likelihood that you’ll have other health conditions, including:

Polycystic Ovarian Syndrome (PCOS) Multiple cysts on the ovaries, higher than normal levels of male hormones, and irregular periods or no periods are the main symptoms of PCOS.

HS is tough disease to live with, says DeNiro. “In addition to the pain and discomfort, there can be a lot of suffering with HS due to the shame and embarrassment of HS and how it impacts interpersonal relationships,” she says.

Many people don’t know a lot about the condition, or they’ve been misinformed, she says. “It’s important to know what HS is not,” says DeNiro.

HS is not contagious. “A lot people are worried it’s like an STD or something. It’s not a sexually transmitted disease and it’s not contagious. It’s important to be aware of that,” DeNiro says.

HS is not caused by poor hygiene. “People can be told by family members or medical providers that they just need to be better at cleaning or personal hygiene and that HS would go away,” says DeNiro. That’s not true, she adds.

Being overweight doesn’t cause HS. “Being overweight is one risk factor for HS, but it doesn’t cause it. People should not feel as though they are to blame for getting hidradenitis suppurativa,” DeNiro says.

Hidradenitis Suppurativa Foundation

The foundation’s mission is to improve the lives of people with HS (and their loved ones) through advocacy, education, and research. Their website provides information on the disease and tips for treatment.

American Academy of Dermatology

This nonprofit professional organization of dermatologists offers expert insights on the treatment and care of HS. Their website can also help you locate a dermatologist in your area.

Hope for HS

This advocacy group works to build awareness and help fund research and is completely run by volunteers. The organization also offers virtual and in-person support meetings for people with HS and their immediate caregiver or partner.

Clinical Trials for HS

There are several ongoing clinical trials researching the best treatments for HS. To find out if you are eligible for a trial near you, visit ClinicalTrials.gov and search hidradenitis suppurativa.