Hidradenitis suppurativa (HS) is a long-term skin condition characterized by bumps under the skin, typically in areas with hair follicles like the armpits, groin, buttocks, and breasts. The bumps tend to be painful and break open, releasing pus or blood. HS typically progresses through 3 stages:
Stage 1
Stage 1 is considered early or mild HS. It is characterized by:
- Single or multiple abscesses, nodules, or boils in the early affected areas (armpits, groin, buttocks, under the breasts)
- Mild discomfort, pain, or itching in affected areas
- No scarring from lesions
Many people remain at stage 1 indefinitely if treated properly. Early diagnosis and treatment is key to prevent progression to further stages.
Stage 2
Stage 2 is considered moderate HS. It is characterized by:
- Recurrent abscesses, nodules, or boils in the affected areas
- More frequent flare-ups of lesions
- Scarring from healed lesions
- Possible tunnels of inflammation under the skin
- Slightly more discomfort, pain, and itching during flare-ups
Proper treatment can still help maintain stage 2. However, without treatment, HS often continues worsening to stage 3.
Stage 3
Stage 3 is considered severe or end stage HS. It is characterized by:
- Widespread scarring and abscesses across entire affected areas
- Multiple interconnected sinus tracts and tunnels under the skin
- Frequent drainage of foul-smelling pus and blood from lesions
- Significant pain, itching, discomfort
- Restricted range of motion in affected areas
At stage 3, the condition is unlikely to improve with treatment. The goals shift to managing symptoms and preventing further progression.
What causes progression to end stage?
Progression to end stage HS is often caused by:
- Delayed diagnosis – The condition is often misdiagnosed in early stages
- Inadequate treatment – Antibiotics alone are often not enough
- Picking and scratching lesions – This can worsen inflammation
- Friction and sweating – Heat, tight clothing, vigorous exercise can trigger flare-ups
- Obesity and smoking – These make HS more severe
- Genetic factors – HS runs in families
Signs and symptoms
The main signs and symptoms of end stage HS include:
- Abscesses and draining tunnels – Open, draining lesions across the affected areas
- Severe scarring – Thick, rope-like scar tissue
- Pain and itching – Ranges from mild discomfort to debilitating pain
- Restricted mobility – Scarring limits range of motion in armpits, legs, etc.
- Foul odor – From chronic drainage and infection
- Depression and social isolation – Due to pain, odor, and disfigurement
Complications
End stage HS can lead to numerous complications such as:
- Chronic pain and reduced quality of life
- Anemia from constant blood loss
- Squamous cell carcinoma – LS has a 5% lifetime risk of this skin cancer
- Osteomyelitis – Infection of the bone under lesions
- Sepsis – Life-threatening widespread infection
- Depression and social isolation
Diagnosis
End stage HS is diagnosed through:
- Physical exam of affected areas
- Skin biopsy – To confirm HS and rule out conditions like infection
- Culture of draining lesions – To identify any bacteria present
- Imaging tests – MRI or ultrasound to evaluate sinus tunnels
- Assessing Hurley stage – Stage 3 indicates end stage HS
Other blood tests and cultures may be done to assess for anemia and infection.
Treatment
Treatment options for end stage HS include:
- Antibiotics – To control infection and inflammation
- Anti-inflammatory drugs – Such as Humira or metformin
- Pain management – Such as NSAIDs, nerve blocks, pain psychology
- Wound care – Keeping lesions clean and dressed
- Surgery – Cutting out affected skin and tissue (wide excision, laser surgery)
Goals of treatment shift from cure to managing symptoms and preventing progression at end stage. Surgery may help remove diseased tissue and improve quality of life.
Home care and lifestyle changes
The following self-care tips can help manage end stage HS:
- Gently wash affected areas with antibacterial soap and pat dry
- Apply warm compresses to lesions to ease drainage
- Avoid shaving affected areas and wearing tight clothes
- Wear breathable cotton fabrics to minimize friction
- Apply antibiotic creams to open sores
- Take prescribed antibiotics and anti-inflammatories
- Maintain a healthy body weight
- Stop smoking and limit alcohol intake
- Manage stress levels through counseling, exercise, meditation
Seeking social and emotional support can also help cope with end stage HS.
Prognosis and outcomes
End stage HS has no cure and is a chronic, progressive condition. With proper treatment and lifestyle changes, many patients achieve:
- Better control of symptoms
- Reduced flare up frequency and severity
- Improved quality of life
- Prevention of serious complications
Though challenging to manage, end stage HS does not reduce life expectancy when properly treated. The prognosis focuses on maintaining function and a satisfactory quality of life.
When to see a doctor
Consult a dermatologist if you experience:
- Boils and bumps under the skin that progressively worsen
- Drainage of foul-smelling fluid from lesions
- Severe pain, itching, discomfort in affected areas
- Restricted mobility from HS lesions
- Thick, rope-like scar tissue in armpits or groin
- Fever, dizziness, or other signs of infection
Prompt treatment from an HS specialist can help prevent progression to end stage disease.
Takeaway
- End stage hidradenitis suppurativa is the most severe form of this chronic skin condition.
- It is characterized by extensive scarring, tunnels, chronic drainage, pain, and reduced mobility in affected areas.
- Proper treatment and lifestyle changes can help manage symptoms and improve quality of life.
- Surgery may remove diseased tissue but there is no cure for end stage HS.
- Early diagnosis and treatment is key to try to prevent progression to this debilitating stage.