Living with a chronic condition like hidradenitis suppurativa (HS) can be emotionally draining. There is no cure, but finding an expert in HS dermatology can help you navigate life with this condition, including when it comes to managing your symptoms. People with hidradenitis suppurativa get painful lumps underneath their skin that can burst open, according to the Mayo Clinic. Many times people go through years of pain without knowing what these lumps are. In fact, individuals with hidradenitis suppurativa usually get diagnosed 7 to 12 years after they first develop symptoms, according to a 2015 paper published in Mayo Clinic Proceedings.
“There are different reasons for this, but oftentimes it is because patients initially present to urgent care centers or emergency rooms for the management of isolated painful bumps, which get treated as infections,” Brittany Craiglow, M.D., board-certified dermatologist and associate adjunct professor at Yale School of Medicine, tells SELF. “But typically these lesions are not actually infected and rather represent localized inflammation that is characteristic of hidradenitis suppurativa.”
Finding a doctor who understands hidradenitis suppurativa is vital in getting proper care. In this case, it may be best to look for a dermatologist who specializes in skin diseases, although many different types of doctors, including general practitioners and gynecologists, are trained to recognize the condition. No matter their specialty, here are some signs your physician is a hidradenitis suppurativa expert.
1. They thoroughly explain the condition.
“A new visit with a hidradenitis [suppurativa] patient should take a good 30 to 40 minutes,” Adam Friedman, M.D., interim chair and professor of dermatology at the George Washington University School of Medicine and Health Sciences, tells SELF. If you’re in and out of your appointment in 10 minutes, there’s no way your physician could have covered all of the necessary information, he says. A knowledgeable doctor will fully explain the condition, its risk factors (especially those that are relevant to you and your medical history), and medications and other treatment strategies, according to Dr. Friedman.
Expect to chat about where you usually experience flare-ups (hidradenitis suppurativa typically occurs in areas where there is a lot of friction, such as armpits, breasts, and groin). Even better, prepare ahead of time by tracking your symptoms. Here are some things to take into consideration: any blackheads in areas where you get flare-ups, how long your bumps last, where your flare-ups occur, and if you notice any pain or swelling before a bump appears, according to the according to the American Academy of Dermatology Association (AAD).
A provider who takes time to really explain the ins and outs of the condition shows that they are not only knowledgeable but also invested in helping you receive proper treatment. If your physician doesn’t explain hidradenitis suppurativa on their own, then you can try to prompt this discussion by simply asking: “What is hidradenitis suppurativa?” or “How can I relieve my symptoms?”
2. They answer your questions confidently—and admit when they don’t have an answer.
Let your physician know what’s on your mind regarding your hidradenitis suppurativa. A knowledgeable doctor should directly answer your more complicated questions or refer you to a provider who can. For example, you may ask about skin cancer screenings since hidradenitis suppurativa can make you more susceptible to squamous cell carcinoma, according to the AAD. It’s a huge positive if your doctor uses research and legitimate sources to back up their answers. (If you’re not sure whether the information they’re sharing is experiential from treating patients or is research-driven, or both, feel free to ask—a great hidradenitis doctor should be comfortable discussing that.) Further, your doctor shouldn’t rule out hidradenitis suppurativa without explaining their diagnosis.
“I appreciate it when my patients bring me questions that they have from their internet research,” Joslyn Kirby, M.D., board-certified dermatologist, researcher, and vice-chair for education for the department of dermatology at Penn State Health, tells SELF. “If you find you can’t do that with your provider, then that might be a sign that you need to find somebody you can work with, be honest with, and ask hard questions of.”
3. They don’t just write a prescription.
Knowledgeable physicians should include you in the treatment decision-making process. As Dr. Craiglow explains, “While unfortunately there is no universally effective therapy, there are lots of options for treatment.” Medications, surgery, and lifestyle changes are just a few common methods, according to the Mayo Clinic.
An expert will let you know what to expect from each possible treatment or management strategy and give you a chance to ask questions about their recommendations. In addition to covering the basics like side effects, your doctor should be able to explain how long a medication might take to reduce flare-ups and how well that medication worked for other patients. Ideally, your health care provider can also answer your questions about the best personal care products and bandages to use during flare-ups.
4. They have other patients with hidradenitis suppurativa.
Speaking of patient anecdotes, there’s a good chance your physician has a pretty solid comprehension of hidradenitis suppurativa if they see other patients with the condition. Don’t be shy here—it’s totally fine to ask if your doctor has other patients with hidradenitis suppurativa, and if so, how those patients manage their symptoms, Dr. Kirby explains.
“If you get the sense that they’re able to talk to you in a clear way about what hidradenitis suppurativa is or what it isn’t, and what has worked for other people or what hasn’t, then I think you can get a better sense that they have a knowledge of the disease,” Dr. Kirby says.
If you aren’t getting clear answers, then it may be worth asking your physician to refer you to a specialist.
5. They don’t repeat hidradenitis suppurativa myths.
It’s a good sign if your doctor mentions that hidradenitis suppurativa is not an infectious disease and isn’t brought on by being unclean. You may get lumps because blocked hair follicles trap bacteria and cause inflammation, but it’s not clear why these hair follicles get blocked in the first place, according to the U.S. National Library of Medicine; this may be due to genetics and hormones, but the lumps have nothing to do with cleanliness. And the condition is definitely not contagious, which an experienced hidradenitis suppurativa doctor should know.
It’s not realistic for every doctor to be a skin expert, but it is reasonable to ask your physician to refer you to someone who is. “One of the signs of a really effective provider is that they know their strengths and they know their limitations,” Dr. Kirby says. If you have a primary care physician that you feel comfortable with, then you may want to ask for a referral to a dermatologist who specializes in skin conditions. Otherwise, you can use the Find a Dermatologist tool on the AAD website. There, you can search for a physician by location and condition. Finding an expert may feel like just another hurdle associated with your condition, but getting a proper diagnosis can help you find the care and treatment you deserve.
Related:
- 10 Ways to Make Life With Hidradenitis Suppurativa Easier
- I Have a Rare, Chronic Skin Condition, and I Went to Questionable Lengths Looking for a Cure
- How to Support a Friend Who’s Just Been Diagnosed With a Chronic Illness