Why It Can Take Some Time for a Hidradenitis Suppurativa Diagnosis

Medically Reviewed By William C. Lloyd III, MD, FACS
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Chronic skin conditions affect millions of Americans, but some are more well known than others. One of these lesser-known conditions, hidradenitis suppurativa (HS), involves painful lumps that form under the skin and cause distressing symptoms that interfere with everyday life.

Although treatment can help, it can be extremely difficult to receive an accurate hidradenitis suppurativa diagnosis. The diagnostic process often takes a long time. But it’s important to stick with it; working closely with your doctor is ultimately the best way to identify the condition and find which treatments work best for you.

What is hidradenitis suppurativa?

HS is a type of inflammatory disease involving blocked hair follicles and, in some cases, inflammation of the sweat glands, also called the apocrine glands. In most cases, HS begins after puberty, but the condition may develop at any time. As the disease progresses, small, irritating lumps form under the skin, usually in areas where skin rubs together such as the armpits, groin, breasts, or buttocks.

HS most commonly occurs in women, typically between the ages of 18 and 29. However, a family history, obesity, and your smoking status can increase your risk of the disease. While the exact cause isn’t known, doctors believe HS could be connected to hormone fluctuations, immune system issues, or genetic mutations inherited in families.

Symptoms may occur in one or more areas of the body at a time. What usually starts as a single, painful, pea-sized lump may eventually develop into more bumps under the skin. Over time, tunnels between these bumps can form, leaking pus and healing very slowly. For some, blackheads also occur in areas of HS.

Why does diagnosis take time?

Unfortunately, the symptoms of HS, especially initial symptoms, often resemble other medical conditions. There are no immediate telltale features that illuminate the diagnosis. Doctors often mistake early hidradenitis suppurativa for cysts, painful pimples, or boils. It’s also common to misdiagnose HS as folliculitis, or infection of the hair follicles. In some cases, the symptoms of HS may mimic certain sexually transmitted diseases.

There is also no specific skin or blood test that can be used to diagnose HS. However, you should see your dermatologist if you have bumps that are painful, appear in areas where skin rubs together, and don’t improve with treatment or return quickly after treatment.

The sooner treatment starts, the less likely serious complications are, such as infections or scarring. If the condition becomes bad enough, the resulting scarring may even limit your range of movement. Your doctor will probably recommend a combination of treatments to help your skin heal and avoid serious complications in the future.

Which treatments are available for HS?

For most, treatment consists of a combination of medications and, in some cases, surgery. Your doctor may recommend:

  • Antibiotics: While HS itself isn’t an infection, it may cause infections under the skin if left untreated. Your doctor may prescribe antibiotic pills or creams to manage any infection that occurs.
  • Anti-inflammatories: These medications help decrease inflammation caused by the immune system.
  • Hormone medications: Certain hormones may contribute to HS. These medications help manage hormone levels in the body, potentially preventing HS from getting worse.
  • Immunosuppressants: Some medications which suppress the actions of the immune system may be beneficial for those with HS.
  • Pain medications: HS can be extremely painful. Your doctor may suggest over-the-counter or prescription pain medication to help you feel better.
  • Steroids: Like anti-inflammatory drugs, steroids help reduce inflammation and pain throughout the body. These medications may be taken as a pill, applied as a cream, or injected.

For some moderate to severe cases, surgery may be necessary to remove any tunnelling or large areas of skin affected by HS. Your doctor will help you decide whether surgery could benefit you.

Waiting on a hidradenitis suppurativa diagnosis isn’t easy, especially if doctors diagnose another condition and then recommend treatments that don’t work. But it’s important to keep tracking your symptoms and let your doctor know about what you’re experiencing, what treatments you’ve tried, and whether or not those treatments work. Continuing to explore ways to help your skin heal can lead you to effective therapies which manage symptoms and reduce your likelihood of complications.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2021 Jun 3
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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.
  1. What is HS (Hidradenitis Suppurativa)? HS Foundation. https://www.hs-foundation.org/what-is-hs
  2. Hidradenitis suppurativa. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
  3. Hidradenitis Suppurativa. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/hidradenitis-suppurativa/
  4. Hidradenitis Suppurativa: Overview. American Academy of Dermatology. https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-overview