Living with hidradenitis suppurativa (HS) can mean navigating a long, frustrating journey to find a doctor who understands the condition. In a study of more than 25,000 people with HS, the top barrier to seeking care was a lack of HS knowledge among healthcare providers.

Many people see multiple doctors before they’re accurately diagnosed with HS. One study found it can take an average of 10 years from developing the first symptom to getting a diagnosis.

Members of myHSteam often discuss the lengthy, stressful process of finding a doctor 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 symptoms and keep new lesions from forming. It’s important to see a dermatologist or an HS specialist as soon as you notice symptoms.

Determine Whether You Need a Referral

Some insurance plans may require you to get a referral before seeing a specialist. It’s always a good idea to check with your health insurance provider to see if there’s a referral requirement. If there is, make an appointment with your primary care provider as soon as possible to get the 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 understands HS. To find a healthcare provider with experience in diagnosing and managing HS, asking questions like the ones below may help. It can also be beneficial to ask for a referral to a board-certified dermatologist.

Specialists called complex medical dermatologists treat rare, challenging, or complex skin diseases, such as HS. 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 an HS Specialist

A report based on feedback from leaders of online support groups representing more than 25,000 people with HS identified five main barriers to care. The top challenges were that many doctors lack knowledge about HS and that it’s hard to access HS specialists. Other barriers included poor communication with doctors and a lack of empathy from healthcare providers. These findings reflect the challenges of finding someone knowledgeable about HS.

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

It’s important to know how to identify providers who understand all aspects of HS. 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 also show that they understand how HS makes you feel emotionally and mentally.

It’s OK to keep looking if a particular physician doesn’t seem like a good fit for you. You can always contact another doctor for a second opinion, even if it means going through your insurer again. This step is worth it to ensure you develop a relationship with a physician who understands your condition and wants to help you manage your HS symptoms.

Ask Your Specialist These Top Questions

Once you have an appointment with a dermatologist, it’s a good idea to make a list of questions ahead of time. Writing down all the issues you want to talk about helps ensure you won’t forget anything at the visit. Include topics that go beyond your skin symptoms, too, such as questions regarding your emotional or mental health.

It’s OK to keep looking if a particular physician doesn’t seem like a good fit for you. You can always contact another doctor for a second opinion.

You’ll also want to ask about what to expect in the future. A healthcare provider who has a firm grasp of your condition should be able to explain how your HS is likely to progress. They can also suggest ways to manage your symptoms so that they don’t get worse.

Feel free to add your own questions to the list. Working with your dermatologist, you can build a care team that supports all aspects of HS. This team may include your dermatologist, a mental health professional, and other specialists, such as a pain management doctor or a surgeon. These healthcare providers can support your care by:

• Creating an HS treatment plan that may include lifestyle changes, prescription medications, or over-the-counter treatments
• Helping you find relief during HS flare-ups
• Offering skin care strategies and tips for healing abscesses
• Connecting you with mental health resources to help manage the emotional impact of HS

Find an HS Specialist Online

It can be challenging to find a doctor who understands HS and its many treatment options. You can use the doctor finder tool on myHSteam to locate a nearby HS specialist.

Join the Conversation

On myHSteam, people share their experiences with hidradenitis suppurativa, get advice, and find support from others who understand.

How did you find an HS specialist? Let others know in the comments below.