Common Misdiagnoses of Hidradenitis Suppurativa

When you have an uncommon disease like hidradenitis suppurativa (HS), getting a correct diagnosis can be a challenge. Doctors believe that between 1 and 4 out of every 100 people in the United States have HS.¹

HS is a painful, chronic inflammatory skin disease. The disease begins when clogged hair follicles cause bumps. The process leads to:²

• Abscesses
• Pus
• Odor
• Inflammation
• Sinus tracts (tunnels under the skin)
• Scars
• Impaired mobility

Flares that come and go make symptoms worse.³

HS diagnosis is slow

Symptoms of HS may lead you to see your primary care physician. Some women see a gynecologist first because many people experience lesions (sores) in or on the groin, genitals, area around the anus, and breasts.⁴

No test identifies HS. Doctors who are not dermatologists (skin specialists) may not recognize it. In fact, correct diagnosis takes an average of 7 years. In the meantime, the disease gets worse.^5,6

Doctors who do not have experience diagnosing or treating HS may commonly confuse symptoms with acne, ingrown hairs, herpes, or isolated boils.^3,7

Confused with acne

HS bumps may be mistaken for acne, especially early in the disease when they are often firm, red, pea-sized lumps.⁷

The usual locations and symmetry of HS bumps help doctors tell them apart from acne. As the disease gets worse, symptoms like abscesses, sinus tracts, and scars make it easier to tell the difference between HS and acne.^8,9

Mistaken for ingrown hairs

An ingrown hair causes a red bump where a hair has grown back into the skin. This often looks similar to an early HS bump, so this may confuse doctors. However, once an ingrown hair is removed, the inflammation fades.^10,11

With HS, the inflammation may progress to a chronic, disabling condition. It returns again and again for years. HS generally fades in women at menopause, though it can continue into advanced age in men.¹¹

Misidentified as herpes

Painful HS bumps in or on the groin, genitals, buttocks, or inner thighs may be mistaken for the sexually transmitted disease herpes. However, there are some differences between HS and herpes, including healing time, scarring, and discharge.⁷

Another important difference is that HS is not contagious, unlike herpes. If the bumps developed without contact with another person, they cannot be herpes lesions.¹¹

Misdiagnosed as boils

Often HS lesions are misdiagnosed as boils. Doctors often treat boils by lancing (cutting or pricking) them to release the pus or with short-term antibiotic therapy. A typical boil has a pointed top containing pus. When burst, the boil drains onto the surface of the skin.¹¹

These treatments work for common boils and seem to work at first for HS, but the HS lesions return. HS bumps are rounded and usually rupture sideways under the skin, spilling their contents into the surrounding dermis, the thickest layer of skin.^3,11

Improvement of HS diagnosis

Certain questions may help doctors tell the difference between HS and boils or other disorders:¹²

1. Does anyone in your family have the same symptoms?
2. Do the “boils” recur in the same spots?
3. Do you smoke or use tobacco products?
4. Do your “boils” flare before your menstrual period?
5. Have the treatments received been helpful?
6. Do you get a fever with these “boils”?
7. Do you have infections elsewhere?

People with HS usually answer yes to questions 1 through 4 and no to questions 5 through 7.¹²

A quicker, more accurate diagnosis of HS allows for more effective treatment. Improved treatment leads to better control of your disease and quality of life.