Living With Hidradenitis Suppurativa

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Why Hidradenitis Suppurativa Can Be Misdiagnosed

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Hidradenitis suppurativa (HS) is a skin condition estimated to affect 1 to 4% of the population. It usually doesn’t appear until after puberty and is more prevalent in women than men. Because it’s a chronic disease that tends to get worse over time, the earlier it’s diagnosed, the better. But unfortunately, HS is often misdiagnosed in its early stages. Why is this the case?

Symptoms of hidradenitis suppurativa can mimic other skin conditions.

Hidradenitis suppurativa develops when hair follicles in your skin become blocked, causing inflammation. It’s often seen in areas where skin rubs together, such as the armpits, groin, buttocks, or under the breasts. Early on, symptoms may include:

  • Pitted skin and blackheads
  • Pimples or lumps that may be red and painful
  • Deep abscesses that rupture, draining foul-smelling fluid

There’s no specific test to identify HS, and research suggests there’s often several years’ delay before it’s accurately diagnosed. It’s frequently first seen by healthcare professionals like general practitioners or gynecologists, who may be less familiar with the disease than dermatologists. It may be misdiagnosed as acne, ingrown hairs, bacterial infection, or recurrent boils, especially when the disease is mild with few skin lesions present. In some cases, lesions on the genitals may be mistaken for a sexually transmitted disease.

Misdiagnosis of hidradenitis suppurativa leads to delays in proper treatment.

Without the right hidradenitis suppurativa diagnosis, you can’t get the right treatment to help slow its progression and lower your risk of complications. As time goes on, more skin lesions are likely to develop. When these inflamed clusters flare up, it can hurt to move or be in certain positions. Tunnel-like tracts connecting the lumps can grow under the skin, and scarring can occur. In areas with repeated flare-ups, scar tissue can become quite thick, restricting movement of your arms or legs.

There’s a psychological component as well. The location of the sores or worries about drainage and odor can lead to feelings of embarrassment or depression. Some people may avoid social interactions or refrain from seeking medical treatment as a result.

Understanding and management of hidradenitis suppurativa is improving.

The good news? Though HS may still be somewhat underdiagnosed or misdiagnosed, our knowledge of this disease has greatly increased in recent years, and with better disease understanding comes better outcomes.

Research has shown that HS is associated with other diseases that affect your follicles, such as severe acne, pilonidal cysts, and cellulitis of the scalp. Additionally, hidradenitis suppurativa may be related to the development of other conditions, including metabolic syndrome, cardiovascular disease, inflammatory bowel disease, squamous cell carcinoma, and some types of arthritis. Recognition of these links helps your doctor make proper diagnoses and manage your overall health.

Treatment of HS is improving as well. Antibiotics are often used—some are applied directly to your skin, like clindamycin,  and some are taken by mouth, like clindamycin, rifampin and doxycycline. Steroids may be given to decrease inflammation, and pain medications may be prescribed to make you more comfortable. More recently, an injectable medication called adalimumab (Humira) was approved by the U.S. Food and Drug Administration (FDA) and has been successfully used to treat moderate to severe cases of hidradenitis suppurativa. Adalimumab is a biologic medication that targets parts of your immune system response that triggers inflammation. Other biologics are currently being studied for effectiveness and safety.

Surgical treatment may also be necessary to treat HS. Small portions of tissue or larger areas of skin may be surgically removed depending on the severity. Other procedures include using electrosurgical peeling or carbon dioxide lasers to treat skin lesions while preserving healthy tissue.

If you have, or suspect you have, hidradenitis suppurativa, don’t despair. It can be challenging to live with, but the right treatment can help you feel better. Contact your dermatologist with any questions or concerns.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2020 Apr 27
THIS TOOL DOES NOT PROVIDE MEDICAL ADVICE. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read on the site. If you think you may have a medical emergency, immediately call your doctor or dial 911.
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  3. Hidradenitis suppurativa: a common and burdensome, yet under-recognised, inflammatory skin disease. Postgraduate Medical Journal.
  4. Hidradenitis suppurativa: from pathogenesis to diagnosis and treatment. Clinical, Cosmetic, and Investigational Dermatology.
  5. Hidradenitis Suppurativa: Overview. American Academy of Dermatology.