Living with hidradenitis suppurativa (HS) can sometimes mean dealing with the arduous task of going from doctor to doctor before finding a specialist who understands the condition. A recent survey of more than 25,000 people with HS revealed that their No. 1 barrier to seeking care was the lack of HS knowledge among providers.¹

Some people have to see multiple physicians before they’re definitively diagnosed with HS. One study found the average time span from first symptom to diagnosis is 10 years.²

Find an HS Specialty Clinic

Members of myHSteam often discuss the long and stressful process of finding a physician who understands the condition. “If my general practitioner understood more about HS, I feel she would be in a better position to treat me,” one member wrote. “But with the dermatologist, I felt like I was actually being listened to and taken seriously. I highly recommend people seek referrals to their local dermatologist.”

Another member shared, “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.^2,3

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 healthcare 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.

“With the dermatologist, I felt like I was actually being listened to and taken seriously. I highly recommend people seek referrals to their local dermatologist.”

— A myHSteam member

It’s important to see a dermatology specialist who has an understanding of HS. To find a healthcare 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.

Know What To Look for in a Hidradenitis Suppurativa 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. 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 healthcare providers.¹ 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 they should show an understanding of how HS makes you feel emotionally and mentally.

You can also ask these and other questions to get a feel for a doctor’s HS experience:

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

It’s OK not to settle if you feel like a particular physician isn’t 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’ll 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.

Ask Your Specialist These Top Questions

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 the issues 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.

When meeting with a doctor, evaluate not only their medical knowledge but also their level of empathy.

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’ll be able to tell you how your HS is likely to progress. They can also suggest solutions to help you manage it so that it doesn’t get worse.

Consider asking the following questions during your visit:

1. Is my HS at a mild, moderate, or severe stage?
2. Which treatments should I consider, based on my symptoms?
3. What are the benefits and risks of my different treatment options?
4. How much will the condition improve if I pursue treatment?
5. Will I need surgery, and, if so, could the lesions return?
6. Should I consider any lifestyle changes that could improve my symptoms?
7. What should I do to care for lesions when they arise?
8. How can I treat my stress and anxiety about these symptoms?
9. How often should I return to you for checkups?
10. If these bumps go away, how do I keep them from returning?
11. 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’ll be able to build a support team that helps you establish the right level of care for every aspect of your condition. This may include your dermatologist, a mental health professional, and possibly plastic surgeons and other specialists as well.⁵

Consider These Resources

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

• Hidradenitis Suppurativa Specialty Clinics — HS Foundation⁶
• Dermatologists by State — HS Connect⁷
• Find a Dermatologist (U.S.) — American Academy of Dermatology⁸
• Find Dermatology Services (U.K.) — NHS⁹

Have you found a great HS specialist? To help other people seeking a healthcare provider, share in the comments how you found yours.

©2024 UCB, Inc., Smyrna, GA 30080. All rights reserved.
US-BK-2401738