Diagnose hidradenitis suppurativa (HS) can be challenging. HS is frequently misdiagnosed as a more common skin condition such as acne, boils, cysts, or folliculitis (inflamed follicular structures within your skin that grow hair). People with HS experience a delay in diagnosis of seven to 10 years on average. This can result in delaying treatment that could greatly improve their quality of life.

“I saw a general doctor who wasn’t educated on HS, and it delayed my diagnosis,” one myHSteam member wrote. Another said, “Doctors need to be more educated on HS so this stops happening.”

How Is Hidradenitis Suppurativa Diagnosed?

If your skin symptoms lead your doctor to suspect you may have hidradenitis suppurativa, they will perform a detailed clinical examination. The exam involves checking for typical HS lesions, including abnormal skin features like nodules, tunnels (sinus tracts or fistulas), or subcutaneous abscesses (painful, pus-filled swellings beneath the skin). Your doctor will also review your medical history and ask about any family history of HS, which can be an important clue.

While HS diagnosis is usually based on physical examination, dermatologists may sometimes order additional tests to rule out other conditions. No specific lab test can confirm HS, but a sample of any drainage may be tested to rule out infection. Ultrasonography (imaging using high-frequency sound waves) can be valuable in this process, as it can detect subclinical fluid collections or lesions not visible on the skin’s surface. A dermatologist often diagnoses HS, though a primary care doctor may examine your skin first or refer you to a skin specialist.

Your dermatology team will typically evaluate three primary factors when diagnosing HS:

• Recurring hidradenitis suppurativa lesions
• A family history of the condition
• Other possible conditions that can be ruled out

Diagnostic Tests and What They Show

Currently, there is no single test for diagnosing hidradenitis suppurativa. However, doctors may use various tests to support and rule out other conditions. They may:

• Test fluid from ruptured lesions for bacterial culture
• Perform a skin biopsy, which involves taking a tissue sample for examination under a microscope
• Order imaging tests, such as sonographic ultrasound examinations, to evaluate fluid collection beneath the skin or detect early vascularization changes (increased blood flow and formation of new blood vessels)

Medical History

Your doctor will also conduct a thorough review of your medical history, asking about HS symptoms over time and family medical history. This history can provide a clearer picture that strengthens the suspicion of HS or rules out other conditions. Your doctor may also consider comorbidities (co-occurring health conditions) associated with HS, such as polycystic ovary syndrome (PCOS) and severe acne, which can contribute to disease severity.

Your doctor may ask about the following factors:

• Frequency of HS lesions — Recurring lesions (at least two episodes within six months) may support an HS diagnosis.
• Family history — About 33 percent of individuals with HS have a close relative who is also affected by the condition.
• Higher body mass — Having a higher body mass does not cause HS, but it may increase the risk of developing HS and worsen the severity of HS symptoms.
• Smoking — Tobacco use may increase the chances of developing HS and aggravate symptoms. Stopping smoking may aid in the treatment of hidradenitis suppurativa.

Physical Exam

Your doctor will conduct a thorough exam of your skin symptoms to determine if they’re consistent with hidradenitis suppurativa. The doctor may be confident in an HS diagnosis or consider more testing to rule out other conditions.

Ultrasound

Your doctor may perform an ultrasound during the HS diagnosis process. This may help your dermatologist detect symptoms like lesions and tunnels that aren’t visible to the eye. It can also allow your doctor to view your hair follicles that are located in deeper layers of the skin.

Abnormal changes in the hair follicles can be an early sign of HS that isn’t visible during a regular examination. Ultrasound can also help catch early-stage lesions that haven’t yet broken through the surface of your skin. Identifying these symptoms early can be essential in preventing them from worsening.

Ruling Out Other Conditions

Several skin conditions can cause symptoms similar to hidradenitis suppurativa. The process of ruling out other conditions with similar signs and symptoms is known as differential diagnosis. Conditions that may resemble HS include:

• Acne
• Boils
• Cysts
• Folliculitis

Your doctor can often rule out many of these conditions based on your medical and family history or with tests like a bacterial culture. For instance, while many people with HS have boil-like nodules or abscesses, these are often not due to infection. Confirming an HS diagnosis and ruling out other potential causes of skin lesions allows for a more accurate management of hidradenitis suppurativa. After diagnosis, your doctor may assess the severity of your HS and assign a stage using a scoring system like the Hurley staging system. This is essential in guiding the best surgical approach and other treatment options.

What Is the Prognosis for Hidradenitis Suppurativa?

There’s currently no cure for HS, but treatments can help manage symptoms, slow disease progression, and sometimes lead to extended periods of remission when symptoms are well controlled.

• Oral medications (taken by mouth)
• Topical medications (applied to the skin)
• Injectable medications, such as biologics
• Surgical treatments, including excision (removal) of the affected tissue

Pain medications such as nonsteroidal anti-inflammatory drugs (NSAIDs) may also help control discomfort. Lifestyle changes, such as weight loss and smoking cessation, can also help reduce symptoms. At-home wound care is also important for managing HS. For some, HS symptoms greatly diminish after menopause.

Regular follow-up appointments with your health care team are key to managing symptoms effectively. Consistent, timely care can help prevent HS from becoming more severe.

Talk With Others Who Understand

On myHSteam, the social network for people with hidradenitis suppurativa, more than 44,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

How was your HS diagnosed? Did you have to visit several doctors before getting a final diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.