Although as many as 13 million people¹ live with hidradenitis suppurativa (HS) in the U.S., not every health care provider has a strong understanding of the condition. Some people have to see multiple physicians before they are definitively diagnosed with HS. One study found the average time span from first symptom to diagnosis is 10 years.²

Members of myHSteam often discuss the long and stressful process of finding a physician who understands the condition. “I asked point blank for a referral to a dermatologist who treats HS,” one member wrote. “What a breath of fresh air to have a doctor take me seriously and to be treated with compassion versus judgement.” Another said, “If you have a big college medical school where the dermatologists also see patients, start there.”

Early diagnosis may help you manage your symptoms and keep new lesions from forming. It’s important to see a dermatologist or an HS expert as soon as possible after you begin experiencing symptoms of the condition.³

Determine Whether You Need a Referral

Some insurance plans may require you to get a referral before seeing a specialist. It’s always a great idea to check with your health care plan to find out about any special referral requirement. If you do need a referral, make an appointment with your primary care provider as soon as possible so you can get the referral process going.

It is important to see a dermatology specialist who has an understanding of HS. To find a health care provider best suited for diagnosing and managing HS, it may be helpful to ask questions like the ones provided below. It can also be beneficial to ask for a referral to a board-certified dermatologist.

Complex medical dermatologists treat difficult, rare, or complex skin diseases, such as HS.⁴ But before you can evaluate whether your physician understands HS, it’s important to know what you should be looking for.

What To Look For in an HS Doctor

A 2019 report from the leaders of online support groups representing more than 25,000 people with HS identified five main barriers to care.⁵ The top responses were “lack of knowledge” about HS among doctors and having “limited access to HS specialists.” Other barriers included poor communication with doctors and feeling a lack of empathy from health care providers.⁵ These responses reflect the challenges of finding someone knowledgeable about the condition.

It’s important to know how to identify providers with HS specialty experience. When meeting with a doctor, evaluate not only their medical knowledge, but also their level of empathy. They should listen to your concerns that go beyond the skin, and show an understanding of how HS makes you feel emotionally and mentally.

• How often do you see people with HS?
• What causes HS?
• What treatments do you recommend for people with HS?
• How often are you able to totally or almost completely relieve people’s HS symptoms or pain?
• What are the side effects of HS treatment?

It’s OK not to settle if you feel like a particular physician is not a good fit for you. You can always contact another doctor for a second opinion. You may have to go through your insurer again, but it will be worth it to ensure you develop a relationship with a physician who understands your condition and wants to help you address your HS symptoms.

Top Questions To Ask Your HS Doctor

When you get an appointment with a dermatologist, one good way to ensure you cover everything on your mind is to make a list of topics ahead of time. If you write down all of the things you plan to talk about, you won’t forget them at the visit. Make sure to include topics that go beyond your physical symptoms. If you have emotional or mental health questions, include those on the list.

Be sure to ask not only about what’s happening to your body now, but also what to expect in the future. If the physician has a firm grasp of your condition, they will be able to tell you how your HS is likely to progress. They can also suggest solutions to help you manage it, so it doesn’t get worse.

Consider asking the following questions during your visit:

• What’s causing these symptoms?
• Is my HS at a mild, moderate, or severe stage?
• Which treatments should I consider based on my symptoms?
• What are the benefits and risks of treatment options?
• What should I consider when making a treatment choice?
• What are the differences among treatment options (e.g., antibiotics, corticosteroids, biologics)?
• How much will the condition improve if I pursue treatment?
• Will I need surgery, and if so, could the lesions return?
• Should I consider any lifestyle changes to improve my symptoms?
• What should I do to care for the lesions when they arise?
• How can I treat the stress and anxiety I’m feeling about these symptoms?
• How often should I return to you for checkups?
• If these bumps go away, how do I keep them from returning?
• Are there any research studies I could participate in?

Feel free to add your own questions to the list before you see your HS physician. Between you and your dermatologist, you will be able to work to create a support team that helps you establish the right level of care for every aspect of your condition. This may include a family physician, your dermatologist, a psychologist, and possibly plastic surgeons and other specialists as well.⁶

Consider These Resources

It can be challenging to find a specialist who understands HS and all of the potential ways to treat it. Several organizations have created directories for people seeking HS experts:

• Hidradenitis Suppurativa Specialty Clinics — HS Foundation⁷
• Dermatologists by State — HS Connect⁸
• Find a Dermatologist (US) — American Academy of Dermatology Association⁹
• Find Dermatology Services (UK) — National Health Service¹⁰

Have you found a great HS specialist? Share how you found them in the comments to help other people seeking a health care provider.