Everything You Need to Know About Hidradenitis Suppurativa (HS)
Do you have lesions or an abscess on the skin, especially uncomfortable spots like your armpits?
If so, you might have a condition known as Hidradenitis Suppurativa, or HS, a common and uncomfortable skin condition affecting millions of Americans.
The good news is that awareness is increasing and more therapeutics are being tested. You just have to know what to look for and how to manage your condition. Here’s everything you need to know about HS so that you can live life unhindered by your skin.
Table of Contents:
5a. Hurley Stage I
5b. Hurley Stage II
5c. Hurley Stage III
10. Common Myths
10a. HS is Rare
10b. HS is Contagious
11a. Mild Cases
11b. Moderate Cases
11c. Severe Cases
Hidradenitis suppurativa, or HS, is a chronic inflammatory skin condition starting and involving the hair follicles.
You may have encountered it under a variety of names, including:
- Acne inversa
- Acne ectopica
- Apocrine acne
- Verneuil’s disease
- Fox den disease
Whatever you call it, the resulting condition is equally unpleasant.
Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated illness and follicular occlusion. It has a huge impact on quality of life physically, mentally, and emotionally. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found (there does not have to be hair growth). It is possible to experience abscesses or lesions anywhere on our body with the exception of the palms of hands, soles of feet, and red part on lips.
To be clear, these abscesses are not acne. Unlike acne, which affects the sebaceous glands, HS affects the sweat or apocrine glands. That said, it’s not uncommon to see HS boils in patients who have severe acne breakouts elsewhere on the body.
HS can occur in multiple areas throughout the body simultaneously. Common symptoms include:
Swollen lumps, pustules, and abscesses are usually the earliest symptom of the disease. This is distinguished from regular acne because they persists for weeks or months. Over time, more of these will form. Blackheads, a form of acne that occurs when a hair follicle fills with oil or pus, are also a common (and unpleasant) feature.
Over time, these pustules, and abscesses may grow and worsen. Tunnels under your skin connecting the boils (called sinus tracts) may form over time. These can be quite painful and heal very slowly (if at all), which contributes to later scarring.
Unfortunately, pustules, abscesses, and boils on skin can recur even after they’ve healed–even in the same place. Some people with HS also experience itching, burning, and profuse sweating, often due to opportunistic bacterial infections.
Where Can You Get HS Lesions?
Lesions on skin can occur pretty much anywhere except areas like your palms or the bottoms of your feet–basically, if it’s an area that has hair follicles, you can get boils there.
However, symptoms are most likely to occur in places where skin rubs together, such as:
- Inner thighs
- Under breasts
These are also areas with two things in common: high hair follicle density along with a lot of oil and sweat glands.
Why You Get Painful Lesions on Scalp
Remember the last time you had an ingrown hair on your scalp? HS is like an ingrown hair to the nth degree.
Unfortunately, lesions on head (under hair) are quite common, ranging from small lesions on the scalp to bigger, more painful lesions. This is due to sweat, dirt, and bacteria accumulating on your scalp. Lesions begin with bacteria.
Your scalp has a few key features that complicate matters. For one, it has a high density of hair follicles, which gives bacteria plenty of opportunities to enter your skin. For another, your scalp doesn’t get as much air as, say, the hair on your arms, mostly because the hair on your scalp is longer and denser. Also, you don’t wash your scalp as often as other areas of the body.
Basically, while your scalp is just as likely as anywhere else on the body to develop lesions, there are several factors which can aggravate your hair follicles to produce painful lesions.
Regular lesions resolve without treatment. That’s not the case for HS lesions, which can persist for weeks or more before they heal and can recur in the same place over and over.
HS is diagnosed based on the severity of the condition in three stages: mild, moderate, or severe. This is known as Hurley staging. Mild cases can consist of a few small bumps on the skin or a few small cysts, while severe stages of HS can lead to recurrent abscesses.
Hurley Stage I is the mildest form of the condition. Ideally, you want to get HS diagnosed at this stage, as it’s easier to work with your dermatologist and use home remedies to keep the condition manageable.
Stage I HS is marked by a few isolated pustules or boils, sometimes in multiples but without sinus tract formation. Single abscesses are frequently mistaken for acne, ingrown hairs, or herpes.
At this stage, the condition is often manageable with at-home remedies. Daily washing with antibacterial soap is the most common treatment, along with warm compresses to help open the pores. You should avoid shaving the infected area and try to keep it dry.
Depending on your case, your dermatologist may also recommend topical steroid cream, corticosteroid injections, or even anti-inflammatory medication. This will help keep boils from growing and prevent additional boils from forming.
If left untreated, Stage I HS will progress to Hurley Stage II.
Stage II, or moderate HS, sees a progressive worsening of the symptoms in Stage I. The key feature of moderate HS is more severe abscesses which recur in multiple areas of your body. Any lesions that originally developed under your skin in Stage I may worsen and break open, leaking foul-smelling pus. You may have some sinus tract formation, but this is mild compared to Stage III. Once these heal, you may see minimal scarring.
At this stage, if topical and home remedies haven’t worked, your dermatologist may also prescribe oral steroids (to decrease inflammation) or antibiotics (to decrease bacterial buildup). You may also be prescribed painkillers if needed.
Hurley Stage III is the least common stage, but it’s also the most painful. At this stage, patients have multiple severe lesions throughout the body, including significant sinus tract formation and scarring across the entire affected area.
Because HS is widespread and recurring at Stage III, this is the most difficult stage to treat. Your doctor may recommend removing lesions, tracts, and scars via surgery, particularly if they interfere with your quality of life. In some cases, immunosuppressant drugs may also be prescribed as a preventative measure.
We know how lesions on the skin start in HS, but we’re not quite sure what causes them to turn into lesions so easily. We do know that people with HS often have other medical conditions in common. These include:
- Heart disease
- High blood pressure
- High cholesterol and triglycerides
- Dissecting cellulitis (severe, patchy hair loss on your scalp)
- Inflammatory bowel diseases, such as Crohn’s disease
- Polycystic ovarian syndrome
- High body mass index
In some cases, the presence of such conditions may lead to misdiagnosis or delayed diagnosis–Crohn’s disease, for example, causes skin lesions similar to those seen in HS.
As with many chronic conditions, patients with HS have a much higher incidence of depression and anxiety than the rest of the population. This can greatly affect treatment outcomes and lead to isolation. It is critical that patients with HS manage their psychological state and those around them support them emotionally.
Complications Associated with Lesions and HS
The painful lesions associated with HS may create additional health complications if left untreated or poorly managed.
Because HS is a chronic condition, it occurs and reoccurs throughout the patient’s lifetime in cycles. For example, many women see worsening symptoms coinciding with menstruation. This means it is crucial to consistently manage your HS symptoms and continue HS treatment, even if your symptoms are minor for the time being.
For some patients, this repetitive cycle of healing and scarring (especially if you have moderate to severe abscesses) can cause the skin to become thick and stiff. Repeated scarring may make the skin difficult to move and may require a dermatologist’s intervention to break up the scar tissue.
Repeated healing and scarring can also cause fistulas, an abnormal connection or passageway between two hollow areas of the body like blood vessels. In this case, fistulas are the result of sinus tracts forming under the skin. These are quite painful and require surgery to repair. If you have sinus tracts, work with your dermatologists to try to prevent fistulas from forming.
The earlier you identify HS, the sooner you can treat it and the sooner you can work to prevent painful or worsening boils.
Unfortunately, HS is often misdiagnosed in its early stages. For one thing, there is no specific diagnostic test, and for another, early stage HS lesions often resemble other conditions like acne, ingrown hair, or herpes, especially if the lesions are on the scalp or groin area.
In fact, many patients suffer for years before they finally get a diagnosis, often attributing the pustules to bad razor bumps. It’s critical to see a dermatologist as early as possible–before the condition worsens and boils turn into cystic sinus tracts and scarring.
A dermatologist diagnoses HS by identifying abscesses and lesions in the affected areas, identifying if the lesions persist for weeks or more, and examining your medical history to determine if you have a history of more than one lesion at a time or a history of recurrent lesions.
At this time, the causes of HS are unclear, which is part of why there is no standardized diagnostic test for the condition. We know that lesions and boils develop when hair follicles become clogged and infected, but it isn’t clear why individuals with HS are more prone to developing painful, recurrent lesions than other people.
We do know that certain risk factors aggravate the severity of the disease.
For example, one of the biggest predictors of HS is a blood relative with the condition, as the disease can run in families. In fact, if you have a parent with HS, you have roughly a 50/50 chance of developing HS yourself if you inherit the genes for it. That said, many people with HS don’t have a blood relative with the condition (about one-third of HS patients have a relative with the condition), and inheriting the genes does not necessarily mean you will develop HS.
One observed feature of HS is that something has to trigger it, though triggers are not universal. For example, the condition usually sets in after puberty and before the age of forty, though many patients get the condition well after puberty. Another common trigger is smoking–70% to 90% of people who get HS smoke cigarettes.
The condition is three times more common in women than men. It’s unclear why, but HS flares before menstruation and decreased severity during pregnancy or after menopause all suggest that hormones play a role.
There have been some observed associations with ethnicity, though these associations are not well-researched. In general, people of European or African descent are more likely to have HS, while the condition is rare in people of Asian descent. In the U.S. specifically, African American women aged forty and under have the highest risk of developing HS compared to other ethnic or age groups.
In addition, certain medical conditions are strongly associated with HS, including:
- Metabolic syndrome
- Irritable bowel syndrome
- Crohn’s disease
- Ulcerative colitis
- Acne conglobata
These conditions do not cause HS, but they are frequently observed in HS patients.
Sadly, there are a lot of myths around HS that contribute to stigma around the condition, including discomfort and anxiety for many sufferers. Here are three common myths and why they’re just myths.
In the United States, the Centers for Disease Control and Prevention define a rare disease as a disease affecting fewer than 200,000 people in the U.S. Common examples include:
- Guillain-Barre syndrome
- Crohn’s disease
- Duchenne muscular dystrophy
- Cystic fibrosis
- Huntington’s disease
By this definition, HS is not a rare disease. In fact, it’s a surprisingly common one. It affects between 3.2 to 13 million Americans. The variation comes from people who may not know that they have HS or may live with misdiagnosed HS for some time.
In other words? You’re not alone by any means.
While HS lesions are brought on by bacterial infections worsening in the sweat glands, HS itself is not contagious. Hurley Stage I boils are often mistaken for herpes, but HS is not the result of any sexually transmitted disease.
To put it bluntly, you can’t catch HS from someone else.
Dermatologists currently believe that HS is not due to disease or infection. Instead, it is currently thought to be the result of a malfunctioning immune system, which causes lesions and abscesses to form in a clogged hair follicle and worsen over time. This makes sense when you consider that many of the conditions that HS patients have in common are all related to chronic inflammation, a common symptom of an immune system disorder.
Perhaps the most pervasive and harmful myth attached to HS is the notion that it is caused by poor hygiene.
Not washing your skin for extended periods will cause lesions due to bacterial buildup, but poor hygiene is not the culprit in HS. Bacteria buildup contributes to worsening HS symptoms, but the root cause of the boils is a severe immune reaction to clogged hair follicles. The issue is how your body reacts to the bacteria, not the bacteria in and of itself.
That said, while poor hygiene is not the culprit in HS, good hygiene (especially with antibacterial soaps and shampoos and medicated topical products) can help alleviate symptoms.
Treatments for Lesions on Scalp and Skin
Unfortunately, HS is a chronic condition. The lesions on skin that it causes tend to recur, and there is not currently a cure. However, there are treatment options which can help keep lesions manageable and relatively painless.
In mild cases, i.e. Hurley Stage I, you’re primarily treating your HS lesions with home remedies.
The most common treatment is a topical cleansing agent like antibacterial soap, shampoos to reduce scalp inflammation, and topical antiseptics. Use these products once or twice a day as recommended by your dermatologist. It’s also a good idea to use a warm compress or hot bath for at least ten minutes to open your pores.
When you dress, stick to loose-fitting clothing to prevent rubbing. As you can, try to maintain a healthy weight–lesions are more likely to occur in areas where the skin rubs together, and being overweight often means more areas for skin friction.
It’s also a good idea to do your skin some favors and do your homework on foods to promote skin health and reduce inflammation. If you have dry skin, especially in winter, it should be managed just as proactively as oily skin–dryness means insufficient oil in the skin, which leads your skin to produce oil faster and can aggravate symptoms of HS.
Once you reach Hurley Stage II, your treatments may still include several features used to manage Stage I, but you’ll bring in tougher treatments to reinforce them.
The biggest difference in treating moderate cases is the introduction of various medications into your care regimen. These may include:
- Corticosteroids to reduce pain and swelling
- Anti-inflammatory medicine like ibuprofen
- Adalimumab (Humira), a tumor necrosis factor alpha inhibitor
- Retinoids (acne-fighting medications)
- Birth control (to limit the impact of hormonal fluctuations)
Your doctor will work with you to find the right combination to manage your unique case.
In Hurley Stage III HS, previous interventions are no longer sufficient to manage recurrent breakouts. At this point, if your lesions are not responsive to medication, your doctor will recommend various surgical interventions.
One option is to have your doctor drain abscesses, which can provide some relief. Lesions may also be deroofed (turned into scar tissue) and laser treatments may be used to clear new or deep-seated breakouts which cannot be cleared topically. In some cases, your doctor may perform excision (surgically cutting out the lesions and scar tissue). Depending on the size and depth of the excision, you may need skin grafts to promote healing.
Treatments to Manage Lesions Over Time
Regardless of the severity of your HS lesions, the best thing you can do for yourself is to proactively treat your condition over time. This will help keep breakouts manageable and prevent lesser breakouts from requiring major interventions. They can even work to prevent new breakouts from developing.
As such, it’s a good idea to use many of the treatments used in mild cases every day, especially antibacterial and medicated shampoos and soaps to keep affected areas clean and uninfected. You should be aggressive with these home remedies as soon as you spot breakouts to prevent them from worsening, and communicate with your doctor to keep breakouts from becoming severe.
We know that hidradentis suppurativa can be a difficult–and at times debilitating–condition. But we also know that your skin should never hold you back from enjoying your life to its fullest.
That’s why we offer a complete line of gentle, effective formulas designed for daily usage. They keep your skin clean and in balance, a critical feature for patients with HS.