Your Guide to Understanding Hidradenitis Suppurativa Treatment

Treating hidradenitis suppurativa can feel like a really overwhelming process. After all, the condition isn’t as well-known as many other conditions that impact your skin, and even trying to pronounce the name can be intimidating.

Additionally, people with hidradenitis suppurativa are often misdiagnosed for years, according to Cindy Wassef, M.D.,1 assistant professor at the Rutgers Robert Wood Johnson Medical School. But even with a proper diagnosis, treating hidradenitis suppurativa isn’t straightforward, according to Dr. Wassef. “I do not treat any two hidradenitis suppurativa patients the same,” she tells SELF. “It really is dependent on your stage of disease, severity, and other factors.”

Understanding the condition and the numerous options for treating hidradenitis suppurativa can help you feel more in control of your health. Here’s what you should know.

What is hidradenitis suppurativa?

Hidradenitis suppurativa is a chronic skin condition that causes really painful bumps in sensitive areas like your armpits,  groin, under the breasts, and between the buttocks, according to the American Academy of Dermatology Association (AAD).2 “It’s a condition where you have what looks like boils, pustules, or acne in sensitive areas,” Steven Xu, M.D.,3 dermatologist and assistant professor in the department of dermatology at Northwestern Medicine Feinberg School of Medicine, tells SELF. 

What are some common hidradenitis suppurativa symptoms?

Hidradenitis suppurativa lesions generally appear in areas where your skin rubs together, according to the Genetic and Rare Diseases Information Center (GARD).4 Other symptoms include:

  • Recurring painful bumps that can burst open, releasing blood, pus, and other fluids that may have an odor
  • Blackheads in small pitted areas of your skin
  • Scarring
  • Sinus tracts, or tunneling that forms underneath your skin

The disease varies, so some people can have mild symptoms and get very few flares while other people have many bumps that occur frequently, Dr. Xu says. The bumps can be really painful and debilitating, making it hard to move or sleep. Many people often have groin flares and feel self-conscious about managing armpit odor from their hidradenitis suppurativa armpit fluids, which can understandably affect their self-esteem and relationships. 

What causes hidradenitis suppurativa?

The exact cause of hidradenitis suppurativa is unknown, but experts think hormones, genetics, and environmental factors may be involved, according to GARD. In fact, roughly 30% to 40% of people with hidradenitis suppurativa have at least one family member with the condition.

Although no one knows what causes hidradenitis suppurativa, experts believe the condition begins when a hair follicle becomes clogged with keratin (a protein contained in our skin, hair, and nails), according to the AAD.5 Eventually your hair follicle is filled with more keratin than it can hold and explodes. When that happens, you can develop a deep painful lump filled with pus, and the contents from your hair follicle spreads to nearby hair follicles, causing more lesions to form.

There can be a lot of stigma with hidradenitis suppurativa. Some people mistakenly believe the sores are contagious or that the disease is caused by poor hygiene.6 These misconceptions are all untrue and only further contribute to harmful misconceptions about the disease.

How do you get a hidradenitis suppurativa diagnosis?

Hidradenitis suppurativa can be mistaken for other skin conditions, such as an infected hair follicle, so people may not get diagnosed for up to 12 years after they first develop symptoms, according to a 2015 paper published in Mayo Clinic Proceedings.7 Seeing a hidradenitis suppurativa expert, if you’re able to, can help you get an accurate diagnosis if you think you have the condition. There is no lab or blood test for hidradenitis suppurativa, but a board-certified dermatologist familiar with the condition will know how to screen you, Dr. Xu says.

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