7 Key Symptoms of Hidradenitis Suppurativa You Should Know

Hidradenitis suppurativa (HS), also known as acne inversa, is a chronic inflammatory skin condition that affects areas of the body where skin rubs together. This painful disease primarily impacts hair follicles in areas rich in apocrine sweat glands, such as the armpits, groin, buttocks, and under the breasts. Understanding the symptoms of HS is crucial for early detection and proper management of this often-misdiagnosed condition.

HS disease typically begins after puberty and can significantly impact quality of life. The condition manifests through a variety of symptoms that can range from mild to severe, and it tends to be chronic with periods of flare-ups and remission. Recognizing these symptoms early can help individuals seek appropriate medical attention and support.

1. Painful Lumps and Bumps Under the Skin

The hallmark symptom of hidradenitis suppurativa is the appearance of painful lumps beneath the skin’s surface. These HS bumps, also called nodules, typically develop in areas where skin folds or rubs together, such as the armpits, groin, inner thighs, buttocks, and under the breasts.

These lumps are usually:

• Pea-sized to marble-sized: They can vary in size but are typically between 0.5 to 2 centimeters in diameter
• Deep-seated: Located beneath the skin surface rather than on top
• Tender and painful: Often causing significant discomfort, especially when touched or with movement
• Firm to the touch: These bumps feel solid and distinct under the skin
• Persistent: They may last for weeks or even months

These painful nodules often appear suddenly and can be mistaken for boils or infected hair follicles. However, unlike typical boils, HS bumps tend to recur in the same locations and may appear in clusters or patterns.

2. Abscesses and Pus-Filled Lesions

As hidradenitis suppurativa progresses, the initial lumps may develop into abscesses—collections of pus beneath the skin. These abscesses are a key characteristic of HS skin disease and represent an advancement from the initial nodule stage.

Characteristics of HS abscesses include:

• Swelling and redness: The affected area becomes noticeably inflamed and warm to the touch
• Pus drainage: The abscesses may rupture and drain thick, often foul-smelling pus that can be clear, white, yellow, or blood-tinged
• Increased pain: The pressure from fluid accumulation causes significant discomfort
• Fluctuance: When touched gently, the abscess may feel like it contains fluid

The drainage from these abscesses can stain clothing and may require frequent dressing changes. Some people experience relief when an abscess drains, but this is typically temporary as new lesions often form nearby.

3. Tunnel Formation and Sinus Tracts

One of the most distinctive and severe symptoms of HS is the formation of tunnels under the skin, medically known as sinus tracts or fistulas. These develop when multiple nodules connect beneath the skin’s surface, creating pathways that can extend several centimeters.

Key features of sinus tracts include:

• Subcutaneous connections: These are channels that link different abscesses or nodules under the skin
• Multiple drainage points: Sinus tracts may have several openings on the skin surface that leak fluid
• Chronic drainage: These tunnels often continuously weep fluid, pus, or blood
• Rope-like cords: You may be able to feel firm, cord-like structures under the skin
• Difficult to heal: Sinus tracts represent advanced HS and are particularly challenging to manage

The formation of these tunnels indicates more severe disease and typically occurs in people who have had HS for an extended period. This symptom significantly impacts daily activities and requires specialized medical attention.

4. Blackheads and Double-Headed Comedones

People with hidradenitis suppurativa often notice the appearance of blackheads in affected areas, particularly double or paired blackheads (known as double-ended comedones). These are small, dark spots that appear on the skin and are considered an early sign of HS skin condition.

Important aspects of this symptom:

• Paired appearance: Unlike typical acne, HS blackheads often appear in pairs or small clusters
• Location-specific: They appear in areas prone to HS, such as the inner thighs, armpits, and groin
• Persistent nature: These comedones tend to remain for extended periods and don’t respond to typical acne treatments
• Follicular involvement: They result from blocked hair follicles, which is central to HS pathology

While blackheads may seem like a minor symptom compared to painful lumps and abscesses, their presence in characteristic locations can be an important early warning sign of hidradenitis suppurativa, especially when they appear in pairs.

5. Scarring and Skin Changes

Chronic inflammation and repeated flare-ups of hidradenitis lead to significant scarring and permanent skin changes. This symptom becomes more prominent as the disease progresses and is particularly evident in people who have experienced multiple episodes.

Types of scarring and skin changes include:

• Rope-like scars: Thick, raised scars that form linear patterns across affected areas
• Depressed or pitted scars: Areas where the skin appears sunken or dimpled
• Skin thickening: The affected skin may become thick, leathery, and less flexible
• Hyperpigmentation: Darkening of the skin in areas of previous inflammation
• Keloid formation: Some individuals develop raised, overgrown scar tissue
• Contractures: Severe scarring can limit movement, especially in areas like the armpits or groin

The scarring from HS can be both physically restrictive and emotionally distressing. These permanent changes serve as visible reminders of the disease and can significantly impact self-esteem and body image.

6. Itching and Burning Sensations

Before visible lesions appear, many people with hidradenitis suppurativa experience uncomfortable sensations in affected areas. Itching and burning are common prodromal symptoms that can signal an impending flare-up.

Characteristics of these sensations:

• Warning signs: Itching or burning often occurs hours to days before a nodule appears
• Localized discomfort: The sensations are typically focused in areas where lesions commonly develop
• Tingling or sensitivity: Some people describe the feeling as tingling, hypersensitivity, or tightness
• Variable intensity: The discomfort can range from mild to severe
• Persistent irritation: Even when lesions are not actively forming, affected areas may remain sensitive

Many patients learn to recognize these early warning signs and can anticipate when new lesions are about to develop. This awareness can sometimes help with early intervention strategies, though it can also cause anxiety about upcoming flare-ups.

7. Foul-Smelling Discharge

One of the most distressing symptoms of HS disease is the discharge of foul-smelling fluid from abscesses and sinus tracts. This symptom can significantly impact social interactions and emotional well-being.

Details about HS discharge:

• Odor characteristics: The smell is often described as distinctly unpleasant, sometimes resembling a rotten or musty odor
• Drainage consistency: The fluid can be thin and watery or thick and purulent
• Color variations: Discharge may be clear, white, yellow, green, or blood-tinged
• Continuous or intermittent: Some lesions drain constantly while others leak fluid periodically
• Staining and hygiene challenges: The discharge can stain clothing and requires frequent cleaning and dressing changes
• Social impact: The odor can be difficult to control and may cause embarrassment or social isolation

The foul smell is not due to poor hygiene but rather results from bacterial activity within the lesions and the breakdown of tissue. This symptom often causes significant psychological distress and can be one of the most challenging aspects of living with hidradenitis suppurativa.

What Causes Hidradenitis Suppurativa?

While the exact cause of hidradenitis suppurativa remains not fully understood, research has identified several factors that contribute to the development of this HS skin condition:

Follicular Occlusion: HS begins with the blockage of hair follicles. When follicles become plugged with dead skin cells, bacteria, and sebum, they can rupture beneath the skin, triggering an inflammatory response that leads to the characteristic symptoms of HS.

Genetic Factors: Approximately one-third of people with HS have a family history of the condition, suggesting a strong genetic component. Certain genetic mutations have been identified in some families with HS, though not all cases are hereditary.

Immune System Dysfunction: HS is now recognized as an autoinflammatory disease, meaning the immune system is overactive and causes chronic inflammation. The body’s immune response appears to be abnormally triggered in affected areas, leading to persistent inflammation and tissue damage.

Hormonal Influences: Hormones play a significant role in HS, as the condition typically begins after puberty, is more common in women, and may worsen during menstrual periods or improve during pregnancy. Androgens (male hormones present in both men and women) may contribute to follicular occlusion.

Risk Factors: While not direct causes, several factors increase the likelihood of developing HS:

• Smoking: A high percentage of people with HS are smokers, and smoking is strongly associated with more severe disease
• Obesity: Excess weight increases skin friction and may worsen symptoms
• Age: HS most commonly develops between ages 20 and 30, though it can occur at any age after puberty
• Sex: Women are more frequently affected than men, though men may experience more severe disease
• Other conditions: HS is associated with metabolic syndrome, inflammatory bowel disease, and other inflammatory conditions

It’s important to note that HS is not caused by poor hygiene, is not contagious, and is not related to sexually transmitted infections, despite sometimes occurring in intimate areas.

Prevention and Management Strategies

While hidradenitis suppurativa cannot always be prevented, especially when genetic factors are involved, certain lifestyle modifications and practices may help reduce flare-ups and minimize symptom severity:

Weight Management: Maintaining a healthy weight can reduce skin friction in areas prone to HS and may decrease inflammation. Even modest weight loss has been shown to improve symptoms in some individuals.

Smoking Cessation: Quitting smoking is one of the most important steps for people with HS. Smoking is strongly associated with disease severity, and stopping can lead to significant improvement in symptoms.

Clothing Choices: Wearing loose-fitting, breathable clothing made from natural fibers like cotton can reduce friction and moisture accumulation in affected areas. Avoid tight clothing that rubs against the skin, particularly in areas prone to HS lesions.

Gentle Skin Care: Use mild, fragrance-free cleansers and avoid harsh soaps or scrubbing, which can irritate the skin. Keep affected areas clean and dry, but avoid over-washing, which can strip the skin of protective oils.

Hair Removal Caution: If you remove hair from affected areas, use careful methods. Shaving may irritate the skin and worsen HS, so consider alternatives like electric clippers that don’t cut as close to the skin. Avoid waxing or plucking in areas with active lesions.

Dietary Considerations: Some people find that certain dietary changes help manage their symptoms. While evidence is still emerging, some individuals report improvement with:

• Reducing dairy consumption
• Limiting foods high in refined sugars and processed carbohydrates
• Following an anti-inflammatory diet rich in fruits, vegetables, and omega-3 fatty acids
• Identifying and avoiding personal food triggers

Stress Management: Stress can trigger or worsen HS flare-ups. Incorporating stress-reduction techniques such as meditation, yoga, regular exercise, or counseling may help manage the condition.

Wound Care: Keep any draining lesions clean and covered with appropriate dressings to prevent secondary infection and protect clothing. Change dressings regularly and watch for signs of worsening infection.

Early Medical Intervention: Seeking medical attention at the first signs of HS symptoms can help prevent progression to more severe stages. Early treatment may reduce scarring and complications.

Frequently Asked Questions About Hidradenitis Suppurativa

What is HS disease?

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that causes painful lumps, abscesses, and scarring in areas where skin rubs together, such as the armpits, groin, and under the breasts. It’s also called acne inversa and is now recognized as an autoinflammatory disease.

Is hidradenitis suppurativa contagious?

No, HS is not contagious. You cannot catch it from someone else or spread it to others through physical contact. The condition is related to immune system dysfunction and follicular occlusion, not bacterial or viral infection.

Can HS go away on its own?

HS is typically a chronic condition that does not resolve on its own. While individual lesions may heal, the disease tends to be persistent with periods of flare-ups and remission. Early medical intervention is important to help manage symptoms and prevent progression.

How is hidradenitis suppurativa diagnosed?

HS is diagnosed primarily through physical examination and medical history. A healthcare provider will look for characteristic signs such as painful nodules, abscesses, sinus tracts, and scarring in typical locations. There is no specific blood test for HS, though tests may be done to rule out other conditions.

What triggers HS flare-ups?

Common triggers include stress, hormonal changes (such as menstrual periods), heat and sweating, friction from tight clothing, certain foods, smoking, and weight gain. Triggers can vary between individuals, and identifying personal triggers is important for management.

Does hidradenitis suppurativa get worse over time?

HS can progress through three stages, from mild (isolated nodules) to severe (multiple interconnected sinus tracts and scarring). However, progression is not inevitable. With appropriate management and lifestyle modifications, many people can prevent worsening of their condition.

Can women with HS get pregnant?

Yes, women with HS can get pregnant. Some women experience improvement in their symptoms during pregnancy, while others may see no change or worsening. It’s important to discuss HS management with healthcare providers when planning pregnancy, as some treatments may need to be adjusted.

Is there a cure for hidradenitis suppurativa?

Currently, there is no cure for HS, but the condition can be managed with various treatment approaches. Early intervention and ongoing management can help control symptoms, reduce flare-ups, prevent complications, and improve quality of life. Consult with a healthcare provider to develop an appropriate management plan.

Can diet affect hidradenitis suppurativa?

While research is ongoing, some people with HS report that certain dietary changes help manage their symptoms. Some find that reducing dairy, sugar, or processed foods helps, while others benefit from anti-inflammatory diets. Individual responses vary, and it may be helpful to keep a food diary to identify personal triggers.

Should I see a doctor for HS symptoms?

Yes, if you experience recurring painful lumps, boils, or abscesses in areas like the armpits, groin, or under the breasts, you should consult a healthcare provider. Early diagnosis and management can help prevent progression to more severe stages and reduce the risk of complications and scarring.

References:

• Mayo Clinic – Hidradenitis Suppurativa
• American Academy of Dermatology – Hidradenitis Suppurativa
• NHS – Hidradenitis Suppurativa
• Johns Hopkins Medicine – Hidradenitis Suppurativa
• DermNet NZ – Hidradenitis Suppurativa