The Complete Guide to Hidradenitis Suppurativa (HS): Causes, Symptoms, and Treatment Options

The Complete Guide to Hidradenitis Suppurativa (HS): Causes, Symptoms, and Treatment Options

Hidradenitis Suppurativa (HS) is a chronic skin condition that affects millions of people worldwide. Despite its prevalence, HS remains largely misunderstood, stigmatized, and often misdiagnosed. If you or a loved one have HS, you know all too well the physical and emotional toll it can take. Painful, recurrent abscesses and lesions can appear in the armpits, groin, buttocks, and under the breasts, leading to significant discomfort, scarring, and reduced mobility. But HS is not just a skin disease. It can also cause depression, anxiety, and social isolation due to the shame and embarrassment that often accompanies it. Fortunately, there are ways to manage HS symptoms and improve your quality of life. In this article, we will break the stigma surrounding HS, explore its causes and symptoms, and provide practical tips on how to manage this challenging condition.

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:

1. Hidradenitis Suppurativa: What is it?

2. What causes Hidradenitis Suppurativa (HS)?

3. HS Misconceptions & Stigmas: Separating Fact from Fiction

4. HS: An Inflammatory/Follicular Occlusion

5. Common Symptoms of Hidradenitis Suppurativa

Hidradenitis Suppurativa: What is it?

Hidradenitis Supurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated inflammatory 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 your hands, soles of your feet, and the red part of your lips.

There is no cure for HS and treatment options are limited however, there are several off label treatments and many HS clinical trials underway. Find out about what clinical trials, surveys and studies are available to part in here.

HS has never been identified or classified as an autoimmune illness; meaning, to date, there is no strong evidence of or long-standing robust research supporting HS as an autoimmune illness. The past several years of research suggest HS as a possible autoinflammatory illness with innate immune involvement, however, more research is needed to determine a definitive category.

There are three Hurley stages used to determine severity.

HS is primarily a follicular occlusion and not a sweat gland disease. Read more about this and why this distinction is important here.

HS may come with other symptoms such as fatigue, low grade fever, and overall malaise, especially during a flare.

HS is NONE of the following:

STD
Contagious
Rare

HS does not discriminate against race, gender, age, sexual orientation, geographic location or blood type.

It is common to have other follicular skin conditions, immune mediated inflammatory illnesses and inflammatory illnesses with HS. It is not uncommon to have autoimmune illness(es) along with HS. Research can be viewed here.

What causes Hidradenitis Suppurativa (HS)?

It's still unknown entirely what causes HS. The best way we've heard it explained is that in acne the pore explodes and the contaminants come out, with HS they don't explode and remain internally where your innate immune system starts a small war trying to get rid of the contaminants causing the inflammation, redness and swelling. This does not mean that HS is an infection or that our abscesses are infected. The reason for the follicular occlusion is still unknown. Read more about follicular occlusions here.

HS is a very personal disease and what is a trigger for one may not be for another. Some common triggers discussed in the community can include the below. Read more about triggers here.

Clothing (fabric choice, fit, etc.)
Food/Nutrition
Exercise

Weather (humidity, heat, etc.)
Food/Nutrition
Friction

Blackheads
Lumps
Pustules
Abscesses
Tunnels

HS Misconceptions & Stigmas: Separating Fact from Fiction

Most of us have heard these before; the HS misconceptions. It doesn’t matter how confident we are in our disease, our triggers or our bodies, these misconceptions still sting. These misconceptions or stigmas are the result of repeating old outdated information time and time again, which is what gets engrained in people's brains as truth. It takes a long time to undo the damage that these stigmas can and have done to the HS population and unfortunately they are to blame for the misdiagnosis and amount of time it can take to get a proper HS diagnosis. They may be just words, but they’re dangerous.

Most of us have heard at least one of these:

It must be something we’re doing or not doing
It must be because we’re not cleanly
It must not be HS because you’re a male, you’re a child, you’re past puberty or you’ve hit menopause
It must be because you are overweight
How did you end up with a rare condition?
You’re not contagious, right?
Are you sure that’s not an STD?
You have an autoimmune condition

These bullet points carry the power to bring us to our knees, to make us feel bad about ourselves, to make us question ourselves. We can change that amongst the HS community and give those who follow in our footsteps a better chance than we’ve had.

Unfortunately the misconceptions run deep, including being ingrained in the opinions of some in the medical field as well. Seeking help from those who perpetuate the stigmas is counterproductive and we’re working diligently to change that.

Here’s the quick breakdown on HS before we get into the misconceptions:

WHAT IS HS?

Hidradenitis Suppurativa (HS) is a complex, chronic and debilitating inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found. HS is primarily a follicular occlusion as opposed to a sweat gland disease, however, glands may be involved depending on the situation and severity. HS has a huge impact on our quality of life physically, mentally, emotionally and financially.

WHERE CAN I DEVELOP HS ON MY BODY?

You can develop hidradenitis anywhere on the body where there are hair follicles; which means anywhere on the body except the palms of your hands, soles of your feet and on your lips.

A common misconception is that HS can only develop where hair grows. There is not always hair or hair growth everywhere hair follicles are found in order to develop HS in that area.

Another common misconception is that HS is a gland or sweat gland illness and only affects gland bearing areas where there are sweat glands, which is also not accurate.

Read more about follicular occlusions and HS here and learn more about glands here.

hs location chart

For women it is reported that the most commonly affected areas include the armpits, under breasts and groin areas. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.

For men it is reported that the most commonly affected areas include the armpits, back of neck, face and groin. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.

WHAT DO I CALL THESE...THINGS?

Abscesses or lesions; they should not be referred to as boils. Learn more about how to refer to HS here.

HOW DO YOU DETERMINE THE SEVERITY OF YOUR HS?

There are three Hurley stages used to determine the severity of HS. The Hurley stages can vary per body part; you could be stage 1 in your armpits and stage 3 in your groin. While there are other scoring/rating/points systems around the world, they are rarely used.

Read more about the Hurley stages here.

Now, on to the misconceptions and stigmas:

YOUR HS MUST BE BECAUSE OF SOMETHING YOU’RE DOING OR NOT DOING.

Nope. This has nothing to do with you, something you’re doing or not doing. There may be things that trigger your HS, but it has nothing to do with anything you’ve done or are doing. You did not create this issue with your body. HS does not discriminate based on age, race, sex, religion, sexuality, blood type or anything else.

Our abscesses smell as a result of pus, which is a combination of dead white blood cells, bacteria (good/bad), tissue debris, serum, and living or dead microorganisms. Many of us can have a smell that seeps from our HS abscesses with no sign of infection when cultured. There are other HS sufferers who have no smell with their abscesses whatsoever. Depending on which stage you are in, you may also have scar tissue and tunneling which can collect pus, sometimes for years, which can also contribute to the smell of an abscess.

Quite the opposite actually. In most cases those with HS are more cleanly and shower or bathe more often than those without due to the odor that can come with our abscesses.

IT CAN’T BE HS BECAUSE YOU’RE ....

Male
A child
Past puberty
Have hit or are beyond menopause

As noted above, HS does not discriminate against age. HS can affect children before puberty and also can even start or continue after menopause. While it is most common that HS symptoms begin during puberty, it can begin at any age and does not stop based on puberty or menopause. In fact, when it comes to men, in North America HS is reported to be more common among women, data from other countries shows a higher prevalence of HS in men. Read more about HS in the male population here.

YOU HAVE HS BECAUSE YOU’RE OVERWEIGHT

Nope. There are many people who have HS who have never been overweight; HS doesn’t discriminate against body type. Many who are diagnosed with HS find it difficult to exercise due to pain from flares or flares that come from the friction and/or sweat from exercising. HS may be more common where skin touches other skin, which may be more common when overweight. Read more about HS and weight here.

ONLY YOU WOULD END UP WITH A ‘RARE CONDITION’

HS is not rare. HS is believed to affect 1 to 4% of the global population and that represents just the reported cases (this does not include capture the misdiagnosis and those who do not seek medical care). We believe the 5-10 year average time for a diagnosis plays a large role in the number of reported cases.

In the US, based on the research to date, women are 3 times more likely to be affected by HS, however, in other countries around the world men are more commonly afflicted at a much higher percentage than women. Read the Statistics for HS article here and the We are NOT a Rare Breed article here.

HS ISN’T CONTAGIOUS, RIGHT?

No. The very definition of contagious is spread from one person or organism to another by direct or indirect contact. If HS was an infectious disease or contagious it would be an epidemic. HS has never been an epidemic or an infectious disease. if one of your abscesses has staph and/or MRSA ,that can be highly contagious if precautions are not taken, however, that is a secondary factor and does not mean HS is contagious.

ARE YOU SURE THAT’S NOT AN STD?

No, HS is not an STD. Unfortunately some of us have been accused of this one too many times when visiting a doctor who doesn’t know anything about HS. This can be difficult to navigate when entering a new intimate relationship.

Read more about how to tell people about your HS here. Watch an interview with Erin Martinez, sex therapist, here on how to navigate relationships with HS.

HS IS AN AUTOIMMUNE CONDITION

There is no evidence or research classifying HS as an autoimmune illness. The past several years of research suggest HS is auto inflammatory affecting our innate immune system (innate immune refers to nonspecific defense mechanisms that come into play immediately or within hours of an antigen's appearance in the body). HS has been identified as a complex inflammatory follicular occlusion illness, also referred to as an immune-mediated inflammatory illness.

The best way to explain the difference between autoimmune is and autoinflammatory is that autoimmune attacks and auto inflammatory reacts.

Read this article to learn more here. Additional research on this topic can be found here.

IT CAN’T BE HS BECAUSE HS DOESN’T DEVELOP ON.....

Back
Neck
Arm
Leg
Elbow
Shoulder
Face
Ear
...anywhere hair follicles are found

While there are “typical locations” for HS as shown on the chart above, HS can impact anywhere there are hair follicles on the body. Again, this does not mean that there must be hair there in order for there to be a hair follicle. HS can develop anywhere on the body other than soles of the feet, palms of your hands and lips. Just because the other areas are not as common, doesn’t mean it can’t happen there.

For any of you who read this and felt vulnerable, uncomfortable, taken back to a place you once were, or a feeling you once had, for those memories it may have brought up, please use that as courage to help break down these stigmas for others with HS to make those feelings a little less, their fight a little less difficult, their road a little less bumpy.

The only ones who have control of changing these stigmas and setting the record straight on HS are us, the warriors, the fighters, the sufferers, the strong, the tired, the resilient. It doesn’t take much to start a chain reaction, a change, it starts with spreading truth and science backed information; it starts with conversations, with open minds. Next time you hear one of these stigmas, please take a moment to correct, not from a place of anger, but a place of information, power, and knowledge and that is what will eradicate the HS stigmas one at a time.

Written by Denise Panter-Fixsen and Brindley Kons Brooks

Edited by Brindley Brooks

HS: An Inflammatory/Follicular Occlusion

Most people wonder if Hidradenitis Suppurativa isn't an apocrine sweat gland disease why does it appear more commonly in the apocrine sweat gland areas?

The Nature of Follicular Occlusion:

Skin fold occlusion is associated with microbiome alterations and subsequent proinflammatory keratinocyte responses. The common areas often associated with HS clinically such as the armpit, inguinal folds, and underneath the breasts are favorable anatomical sites for follicular occlusion because they can easily experience environmental changes. These changes can be in the form of moisture levels, acidity or pH, and microorganism that inhabit the area. For example, an increase in moisture in these areas decreases pH = more acidic environment better environment for colonization of bacteria, proteins, and the release of inflammatory molecules leading to follicular occlusion.

Why does it seem to be more common and possibly more severe in some areas (apocrine sweat gland areas) as opposed to other areas of the body?

The Skin Layers

The skin is composed of an epidermal layer, hair follicles, sebaceous glands, and sweat glands, which can descend into the underlying dermis. Hidradenitis Suppurativa is primarily a follicular occlusion disease with secondary involvement of the apocrine and eccrine glands.

The sebaceous glands are located in the dermis, the middle layer of the skin, and they develop from the epithelial cells of the hair follicle itself (the external root sheath of the hair follicle). Sebaceous glands are the most closely related to hair follicles and are located throughout the entire body. Sebaceous glands are the oil secreting glands of your body, which is why they are also called the oil glands. They are a type of holocrine simple saccular (alveolar) gland and their function is to secrete a substance called sebum. Sebum is a mixture of fatty substances, entire sebum-producing cells, and epithelial cell debris.

Eccrine glands are the most numerous types of sweat glands and are found almost everywhere on the body. These are the true sweat glands in the sense of helping to regulate body temperature. In other words, sweating causes the loss of body heat and thus cools us down on a hot day or when performing strenuous exercise. This is because as the water in sweat evaporates it takes body heat with it. They secrete moisturizing factors such as water, lactate, urea, sodium and potassium to maintain skin hydration. Secreted sweat mixed with sebum on the skin surface forms a moisturizing lipid layer. Recent studies have further demonstrated that sweat glands secrete several antimicrobial peptides, including dermcidin, cathelicidin and lactoferrin, which help to control skin flora and fight skin infections.

Apocrine glands are a subtype of exocrine secretory glands and are found in many locations such as the axillae, areolae, and anogenital region. These glands, unlike the eccrine glands, serve virtually no role in the regulation of body temperature. These are also the glands largely responsible for body smells, as their excretions are converted by skin bacteria into various chemicals we associated with body odor.

The reason Hidradenitis Suppurativa can develop and be more common in apocrine glands areas is because it has the most abundant amount of hair follicles. Follicular occlusions can happen anywhere there are hair follicles, in any part of the sweat gland regions, which is anywhere on the body, with a few exceptions.

Depending on the amount of inflammation and the depth of your Hidradenitis Suppurativa, sweat glands may become irritated or triggered secondarily and can contribute in making things worse, however, they are not the primary role in Hidradenitis Suppurativa. Most people get clogged hair follicles from time to time, but if you have Hidradenitis Suppurativa, your body is overreacting to those blockages and triggering the innate immune signals.

Some researchers believe the inflammatory immune signals come first and the process of follicular rupture and dermal tunnel formation may happen as a secondary response to the inflammatory response. The one thing most researchers can agree on is Hidradenitis Suppurativa has an immune inflammatory response along with follicular rupture.

Read What is HS: Inflammatory/Follicular Occlusion here.

Read more about gland removal and if it's necessary here.

Read about Blackheads and HS here.

Research article link here.

Content in this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking treatment because of something you have read on this website.

hsconnect.org

Written by Denise Panter-Fixsen

Edited by Brindley Kons

Common Symptoms of Hidradenitis Suppurativa

What are the common symptoms with Hidradenitis Suppurativa and what is considered “normal”?

In this article we are focusing on systemic symptoms. Data has been collected over the years by working side-by-side with hidradenitis sufferers by way of patient advocacy, face-to-face support groups, various online support groups, and from our own survey recently posted in hidradenitis support groups, which includes data collected from roughly 500 Hidradenitis Suppurativa sufferers.

Below are the most commonly reported systemic symptoms during flares listed in order by highest percentage:

Fatigue: This is not the normal "I did not get enough sleep" fatigue. This type of fatigue is feeling tired all the time and can also present as body fatigue. This type of fatigue is also known as chronic fatigue and can be debilitating in some cases and presents with or without activity.

Malaise/ Flu-like symptoms: A general feeling of discomfort or uneasiness including feeling achy or run down.

Nausea: The feeling that you may vomit; a queasy feeling that ranges from slightly uncomfortable to agonizing, often accompanied by clammy skin.

Flush warm feeling without fever: This is where you feel like you have a fever, however, you do not. Your face my become flush. You may even feel warm to the touch on your face or body. Note: If this happens always take your temperature to rule out a fever.

Low-grade or Mild fever: This includes a temperature above normal, but below 100.4 F (can range anywhere from 99 F to 100.4 F). Anything 100.5 and above, especially with other symptoms could indicate something more serious is going on and you should seek medical attention.

Cold Sweats: Chills alongside abnormal sweating, regardless of how hot or cold it is in your environment. Cold sweats can happen without fever.

Headaches: Self-explanatory and can come in many forms.

OTHER SYMPTOMS REPORTED (only a small percentage of people reported, not as common):

Leg Weakness: There are various things that can cause leg weakness; if this becomes chronic or bothersome please consult your physician.

Low Temperature: This can happen for various reasons, especially if you're dealing with anemia. This can also present with infection in some cases. If your body temperature drops to 95 F or below seek medical attention immediately.

Dizziness: Several things can cause dizziness: Pain, getting up too fast or dehydration. If this becomes chronic consult your physician.

Achy Joints: This can be caused by various things including chronic inflammation. If this becomes chronic, bothersome, or debilitating speak to your physician.

Although many of the common symptoms listed above seem to be normal and common among hidradenitis sufferers, as always, never assume every symptom is related to Hidradenitis Suppurativa. Always speak to your physician about your symptoms and ensure everything else has been ruled out before making the assumption any symptom is related to your Hidradenitis Suppurativa.

Please see research on symptoms HERE

Disclaimer: This is an internal research project conducted with the help of and in order to help Hidradenitis Suppurativa sufferers. Although research supports some of the findings, we cannot say at this time, that research backs up everything mentioned in this article.

If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.

This is an awareness article for educational purposes.