Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition that affects about 1% of the global population, primarily emerging in early adulthood1 . It causes painful lumps, abscesses, and tunnels under the skin, mainly in areas where skin rubs together, such as the armpits and groin2 . Despite its prevalence, HS is often misdiagnosed or overlooked, leading to delayed treatment and significant impacts on quality of life3 . Early recognition and diagnosis are crucial to managing symptoms and preventing complications1 .
Recognizing Unusual Skin Lesions
Hidradenitis suppurativa is not your typical acne or pimple. It primarily affects areas rich in apocrine glands, such as the axillae (underarms), inframammary (under breasts), groin, and perineal regions4 51. Unlike common acne, HS lesions are deep-seated, painful nodules that can suppurate (produce pus) and form abscesses or sinus tracts (tunnels under the skin) 67. These nodules are often firm and recurrent, either solitary or grouped, and may persist longer than typical pimples or boils4 6.
Early HS lesions are frequently mistaken for boils, folliculitis, or ingrown hairs, which contributes to an average diagnostic delay of 3 to 10 years in adults8 31. This delay worsens disease severity and increases the risk of complications1 . Palpable, deep nodules or abscesses that persist beyond usual irritation or infection should prompt professional evaluation6 9.
HS lesions often appear in areas where skin rubs together and sweating is common, and symptoms may worsen with heat and sweating5 10. Groin discomfort and nodules that do not resolve with typical treatments may be early signs of HS9 . Clinicians are encouraged to ask about recurrent lesions in typical HS sites to aid early diagnosis11 .
Differentiating HS from severe acne or other skin conditions like polycystic ovary syndrome (PCOS)-related cystic acne is important. PCOS acne usually affects the face, especially cheeks and jaw, while HS lesions occur in apocrine gland-bearing areas12 . HS nodules are more painful and deeper than acne whiteheads or cysts6 13.
Key features to recognize early HS lesions:
- Painful, deep-seated nodules or abscesses in apocrine gland areas4 6
- Recurrence of nodules in the same or nearby locations4 11
- Lesions that suppurate or drain pus, sometimes with malodor14 13
- Persistence beyond typical boils or folliculitis duration8 9
- Common sites: axillae, groin, inframammary, perineal, and perianal regions15 51
“Hidradenitis suppurativa affects hair follicles and associated oil and sweat glands, leading to painful lumps and boils primarily in skin folds where friction occurs. 2”
Coping With Emotional Distress
HS is more than a physical skin condition; it carries a significant psychological and emotional burden. Patients often experience confusion and shame due to the chronic nature of the disease and the locations of lesions, which are frequently hidden under clothing12 8. Misconceptions about hygiene and stigma can worsen feelings of isolation12 .
The pain, malodor, and visible scarring associated with HS contribute to reduced quality of life, social anxiety, and emotional distress14 1312. Anxiety and depression are common comorbidities, with HS patients showing higher rates of these conditions compared to the general population14 131. The risk of suicide among HS patients is nearly 2.5 times higher than average, underscoring the need for psychological support1 .
Heat and sweating can exacerbate symptoms, making warm seasons particularly challenging and increasing discomfort and social withdrawal5 10. The psychological burden often motivates patients to seek diagnosis and treatment, but delays in recognition can prolong suffering14 8.
Strategies to cope with emotional distress in HS:
- Seeking professional mental health support for anxiety and depression14 1
- Understanding that HS is not caused by poor hygiene or contagious12 10
- Using clothing and hygiene practices that minimize irritation and embarrassment5 1
- Recognizing the chronic but manageable nature of HS with proper care8 16
- Connecting with patient communities for shared experiences and support12
Emotional distress in HS patients is profound due to pain, stigma, and social isolation. Early diagnosis and validation of symptoms can improve mental health outcomes and quality of life. 121314
The Importance of Diagnosis
Diagnosis of hidradenitis suppurativa is clinical, relying on patient history and physical examination of characteristic lesions in typical body areas5 1. There is no specific laboratory test for HS, which contributes to frequent misdiagnosis as boils, folliculitis, or acne16 8. Early lesions may not resemble textbook images, adding to diagnostic challenges5 .
Diagnostic delays average seven years worldwide, during which patients often consult multiple specialists and receive several incorrect diagnoses3 1. This delay correlates with increased disease severity and comorbidities at diagnosis1 . Early recognition by primary care and gynecological providers can improve outcomes and reduce complications9 11.
Clinical examination remains the cornerstone of diagnosis, with ultrasound increasingly used to detect early subclinical signs and assess severity17 18. Gynecological exams can reveal HS signs in typical female locations, aiding diagnosis9 . Diagnosis can sometimes be made based on history and subtle signs even without active lesions5 .
Referral to dermatology specialists is recommended for accurate diagnosis and treatment planning, especially in moderate to severe cases4 51. Early diagnosis validates patient experiences and opens pathways to effective management8 11.
Common diagnostic challenges and recommendations:
- HS lesions often mistaken for common skin infections or acne8 11
- No laboratory test; diagnosis based on clinical features and history16 1
- Use of ultrasound can detect early disease not visible on examination17 18
- Early referral to dermatology improves treatment outcomes4 5
- Screening for comorbidities like diabetes and depression is important1
“Hidradenitis suppurativa is a chronic inflammatory disease characterised by painful, deep-seated nodules, abscesses, and draining tunnels in the skin of axillary, inguinal, genitoanal, or inframammary areas.”
— The Lancet1
| Hurley Stage | Description | Clinical Features | Treatment Approach |
|---|---|---|---|
| Stage I | Single or multiple abscesses without sinus tracts or scarring | Rare, mild inflammatory nodules | Topical clindamycin, lifestyle changes19 1 |
| Stage II | Recurrent abscesses with sinus tracts and scarring; widely separated lesions | Moderate disease with tunnels and scars | Oral antibiotics, biologics, dermatology referral19 1 |
| Stage III | Diffuse skin involvement with multiple interconnected sinus tracts and abscesses | Severe, widespread disease with scarring | Surgical intervention, advanced therapies19 1 |
Finding Support From Peers
Connecting with others who have hidradenitis suppurativa can empower patients and improve coping skills. Many people with HS have heard of the condition but do not recognize their symptoms as HS, which contributes to delayed care11 . Even healthcare workers may delay diagnosis in themselves due to symptom variability8 .
HS presentations vary widely, and early disease may not match typical textbook images, leading to symptom minimization by patients8 5. Peer support groups and social media platforms provide valuable spaces for sharing experiences, knowledge, and self-management strategies12 8.
Self-care is a key component of HS management. Patients often use topical antibiotics and antiseptic washes to control mild flares, but professional care is essential to prevent progression8 5. Behavioral modifications such as reducing skin friction, maintaining dry skin, and cautious hair removal can help minimize flare-ups5 .
Patient communities and peer support groups play a crucial role in empowering individuals with HS, improving knowledge, coping, and quality of life. 128
Engagement with patient communities offers validation and encouragement, helping patients accept their diagnosis and navigate treatment options8 11. Dermatology referral remains important for comprehensive care and access to advanced therapies4 5.
Benefits of peer support and self-management:
- Improved understanding and recognition of HS symptoms12 11
- Sharing effective self-care strategies and flare management5 8
- Emotional support reducing feelings of isolation and stigma12
- Encouragement to seek professional care and adhere to treatment8
- Access to updated information on new treatments and research12
