Ebone Colbert: Hi, my name is Ebone. I'm 40 years old. I've had HS since 2010, so it's been about close to 15 years that I've been living with this disease.

Neha Pathak, MD, FACP, DipABLM: Welcome to the WebMD Health Discovered Podcast. I'm Dr Neha Pathak, WebMD's Chief Physician Editor for Health and Lifestyle Medicine.

Colbert: My symptoms first started in maybe September.

Colbert: I kept having what I thought were a couple of recurring boils, and so I made an appointment with a dermatologist. But it was a couple of weeks before I could get in, and I noticed that these bumps were just getting worse.

Pathak: If you've ever dealt with recurring painful bumps, boils, or abscesses in sensitive areas on your body—like your underarms, groin area, or beneath your breasts—you may have wondered:

Pathak: Is this just a really bad case of acne, or is this something more? And what can I do to heal it and prevent it from happening again?

Colbert: I remember my husband Googling around, and he was like, "I think you might have this—it kind of looks like this." At that time, all the pictures were of basically white people that had HS.

Colbert: And so I was like, mine looks slightly different, but maybe it could be that. It's gotten much better now, but back then in 2010, I didn’t think a lot of Black people had HS. It just wasn’t shown. So now when you Google, you should see all different skin tones. I’m glad that there’s been progress in that area because I was like, this is me—but is it me?

Pathak: Today we’re talking about Hidradenitis Suppurativa, also known as HS. HS is a chronic, often misunderstood condition that has both a physical and emotional impact on those experiencing it. HS is estimated to affect one to four percent of people in the United States, and while the exact cause of HS is still unknown, today we’ll identify the clear warning signs to look for, why HS is so often misdiagnosed, mistreated, or dismissed, and what treatment options are available—from topical therapies and biologics to surgery and lifestyle changes. We’ll also tackle the rampant myths and misconceptions to empower you with facts and a path forward in your treatment of HS.

Pathak: But most importantly, we’ll offer tips for how patients can advocate for themselves, build the right care team, and connect with communities that understand what living with HS is really like and how to navigate it. If you’ve ever asked yourself, “Why do my HS symptoms keep coming back, and what can I do about it?”

Pathak: This episode is for you.

Pathak: More on HS when we return.

Pathak: We’re back, so let’s continue the discussion.

Colbert: I think it took me about two months to get into the dermatologist, and he did diagnose me with HS. He had me do antibiotics and some other medications, but it just wasn’t working for me. At this point, I was bandaging myself every day. It was very bad under my arms—to the point where I stopped kind of moving them a lot because movement hurt.

Colbert: So a flare for me started off like a bump. It was sore, red, and I would feel a pressure pain. I knew it was filling up with something and it needed to come out, but the problem was once it opened, it didn’t heal. So my husband would have to help me shower every day, and he would have to clean the area.

Colbert: It was so painful because it’s raw skin—raw flesh. Then he would have to bandage me every night, and we had to make sure everything was covered, because any type of exposed flesh would hurt. Even the wind just touching it or clothes brushing against it would hurt. I remember getting to a point where it was really depressing because I wouldn’t want to go out; I was in so much pain. I would go to work, do my job, and come home, and I wanted to go to sleep because that’s how I dealt with the pain. I remember having a conversation with my husband like, I don’t know if we need to separate, because, you know, stuff that newlyweds typically do within their first couple of years—we weren’t able to do.

Colbert: And I’m like, well, that’s not fair to him. He was like, “I took vows, and this was through sickness and health, and I’m gonna stick around and we’re gonna get through this.” So we tried to make the best of a basically messed-up situation. Having kids was totally off the table. My husband said, “I can’t take care of you and take care of a kid.”

Colbert: And that’s when I was super sick. That was the last thing on my mind. I’m just happy that he’s still here. I also remember educating health professionals about my condition as well. Some professionals had never heard of it. I used to have what I called a “medical résumé,” almost two pages of information to give to the doctor—my medical history, and I might even have included a definition of what it was.

Colbert: I remember finding support online with Facebook groups between 2012 and 2014, and it gave me a space where I could go and just complain about it and not be judged. I had other people who understood where I was coming from, how I felt, and who were going through the same thing.

Colbert: Going in person eventually and having a support group in person was awesome for me. I had a doctor who wasn’t listening to me—he was like, “Oh, it’s probably this, it’s probably that.” Having a doctor that you can have a relationship with—one who understands you, supports you, and listens to you—and being able to build that relationship and trust with that provider, that would be my first piece of advice.

Colbert: You have some good days, and sometimes you have some not-so-good days. When you’re not having a good day, don’t feel bad about it. Don’t feel guilty about it, because you have to do whatever you need to do to take care of yourself. Also, with HS, at least for me, I find that stress triggers it.

Colbert: If I’m really stressed, I’ll have a flare-up. So I try—keyword is try—to minimize the stress in my life. But I mean, that can be hard. I have a 7-year-old, who I love to death. He’s a 7-year-old with his own personality. But I try to control some of the stresses that I can, so that I don’t flare up.

Pathak: First, let me introduce my guest, Dr Vivian Shi. Dr Shi is a professor in the UW Department of Dermatology and a board-certified dermatologist at the UW Medical Center, Roosevelt Dermatology Center. She leads clinical research in the department as the Clinical Trials Unit Director and is the founder and director of the Hidradenitis Suppurativa Clinic.

Pathak: Welcome to the WebMD Health Discovered Podcast, Dr Shi.

Vivian Shi, MD: Hello. Thanks for having me. It’s a pleasure.

Pathak: Great. So I’d love to dig in to learn more about the condition. Can you first talk to us a little bit about what Hidradenitis Suppurativa is?

Shi: Absolutely. Well, first of all, it’s a mouthful. Um, most of us had trouble pronouncing it, even when we were learning it.

Shi: Um, in short, for HS, it’s actually not uncommon. Traditionally, it was an orphan disease where there were no treatment options and it was thought to be very rare, but now we understand that it’s actually underdiagnosed and underrepresented to healthcare providers in the larger sense. People get painful and potentially debilitating abscesses, tunnels, and inflammatory nodules—bumps—in these very sensitive skin fold areas.

Shi: Mainly in the armpits, kind of below the chest, and in the groin folds and buttocks. Um, but it can essentially happen anywhere on our skin that has hair follicles—so that’s anywhere except for the palms and soles. And some individuals can have very severe conditions where they live with chronic pain, irreversible damage, and disability. So it’s definitely a disease that deserves a lot of attention, and I’m so glad that we’re dedicating this podcast to HS.

Pathak: That’s really helpful. Do we know anything about what causes it? Are there multifactorial reasons that someone might develop Hidradenitis Suppurativa?

Pathak: The answer is—

Shi: Yes and yes. So, um, I think the root cause for any chronic condition is difficult. It’s not as straightforward as skin cancer, for example, where UV light plus a genetic risk in the right setting causes skin cancer. For inflammatory diseases in dermatology, it’s a little bit more complicated.

Shi: So if any of you listeners know the root cause, I wanna get connected, I wanna take notes, I wanna learn from you. So we don’t know the root cause yet. It’s thought to be due to a constellation of causes. And since we don’t have a silver bullet yet, all the treatment options we design in the treatment toolbox for HS patients are aimed to target each of the known causes for HS.

Shi: So there is likely a genetic component because we know there are patients with family members with HS. There’s an environmental component—for example, humidity, heat, exercise, and friction tend to worsen HS. There’s a hormonal component to it too, especially prominent in women. Um, some people report cyclic flares with their ovarian cycle. And there’s dysregulated inflammation, if you would, and part of it is due to immune dysregulation to bacteria and other normal things in our skin, coupled with abnormal scar-forming tunnels.

Shi: And previously it was named sinus tracts, but the more updated term is sinus tunnels.

Pathak: And can you tell us a little bit about when people first typically develop symptoms of HS?

Shi: Yeah. Interestingly, for most patients, HS develops around puberty. Now, puberty is a little earlier for women than men, but around that time, some people tend to have precocious puberty, so that can happen as early as eight or nine years old.

Shi: But HS can happen at any age. I’ve had people who have HS for the first time in their fifties. So definitely there is somehow kind of a two-hit theory—someone’s already at risk but doesn’t develop it until another setting occurs to elicit the manifestation of HS.

Pathak: So you went through some of the symptoms that patients typically come in with. Can you give us a little bit more information about where this typically shows up, and is there a spectrum of disease? Can someone have a very mild case and somebody else have a very severe case? Can you talk to us a little bit about how it can show up in different people?

Shi: That is a great question. That’s an area we hope to explore more as a community. There are more predominant areas—those with more apocrine glands—we call them the pheromone glands—but traditionally it can happen everywhere. Uh, but most people get them in the underarms, below the breasts, groin folds, and buttocks—anywhere the skin touches skin.

Shi: But you know, as mentioned earlier, it can happen anywhere. So for people who don’t have the typical locations, they can even get it on the scalp, behind the ears, in the thighs, or even behind the legs. Most of the time, people start having abscesses or inflammatory nodules. They initially look like pimples, and sometimes people call them boils in the community—but they’re abscesses.

Shi: Initially, they come and go with periods of remission without scarring. And this is one of the challenges we face—when people think, “Okay, it’s gone for now,” they delay care, only to experience it again during another flare. For most people, as the disease progresses, each individual bump, if you would, gets scarring, and over time the scars connect with each other underneath the skin as a bridge or a tunnel.

Shi: And that becomes really irreversible. As the tunnels expand with repeated flares, they form interconnected tunnels—almost like an anthill underneath the skin. Within these tunnels, there is inflammation, bacteria, trapped hair—you name it. And the body is desperately trying to clean that up, because it’s not supposed to be there. But it has difficulty doing so, and it creates more inflammation and becomes a vicious cycle.

Pathak: That is really helpful. So can you help us dispel certain myths or misconceptions about the condition? Because it sounds like, from the way that you’ve described it, the natural sort of history—the course of the condition—can really start off with pimples or boils.

Pathak: People have certain ideas around why that happens, all the way to significant tunneling under the skin and a lot of inflammation. So what are some of the misconceptions that we need to eliminate for patients and for people that are interacting with people who have HS?

Shi: Super important topic to explore. I think demystifying HS is one of the high-yield topics we should really think about as a community. I’ll start with too much stereotyping of our HS patients in general. There’s a lot of stereotyping that says HS only happens in overweight African American women. That’s kind of like what people were taught as the prototypical patient—but we know that is so not true.

Shi: We have very thin, light-skinned individuals who are way more advanced in their age that will get it. Right? So how do you explain that? Anyone could be at risk of getting this condition. Another misconception is that it’s due to poor hygiene. I can’t tell you the countless times my patients have told me, “Well, you know, my doctor so-and-so just told me to shower more or have better hygiene, then my HS will go away.” That is not true.

Shi: Another thing is, traditionally, there have been many cases of misdiagnosis of HS being called a sexually transmitted infection, or STI. And I can see why, for someone who’s not familiar with HS—because it appears to have pus, inflammation, or so-called boils, and a lot of times in private areas, in the genitals. Because of this overlap in location and morphology, it can be misdiagnosed as a sexually transmitted infection.

Shi: And what’s even making things harder is one of the primary or foundational treatments for HS is topical and oral antibiotics—not necessarily to treat infection, but to restore the microbiome and help inflammation calm down. But it’s misunderstood as, “Okay, well, I’m getting antibiotics, so that must mean I have an infection.”

Shi: Another misconception would be that HS is purely a surgical entity—and that’s only partially true. Historically, when you had HS, regardless of severity, if there was a permanent structural issue, you went to the surgeon, cut it out, and were good. But now we understand that medical therapy and surgical therapy have to come hand in hand for people to have the most optimal outcome. In fact, if you do surgery too early, it can have a worsening outcome.

Pathak: We'll be right back with more insight on HS.

Pathak: Let's get back into our conversation on HS. That's really helpful. And that kind of leads to my next question, which is really around treatments and optimizing management. So what would you say would be a step-by-step approach? Because it sounds like going straight to surgery or going straight to some other intervention is maybe not ideal, but that there is sort of a step-by-step approach. So can you walk us through what that looks like?

Shi: Sure. And so when I think about a step-by-step approach, unlike other diseases, I feel like people should have cycling of treatments, but in HS it's a little trickier than that. We typically recommend treatment stacking — like pancakes, if you would — instead of taking away an existing treatment when it's suboptimally responding and replacing it with a new one, you should add another one. Almost always, we recommend people to have lifestyle modifications and stress reduction — for example, limit tobacco smoke.

Shi: Be mindful about some food triggers such as dairy and sugary food, things like that. When people have milder HS, we attempt to do topical treatments with antibiotics and other, you know, targeted anti-inflammatory treatments. And at this stage, when we have flares, we could have to do a short course of oral antibiotics to calm the inflammation.

Shi: Hormonal modulation is very important in women, especially when people have a cyclic flare. So we would sometimes use spironolactone, which blocks the effect of the male hormone. Women have male hormone too, in the body and skin and hair, and so we're layering it as we speak. One of the pivot points in treatment that I feel like we need to do better on as a community is defining the pivot point between using the treatments that we just talked about and marching into systemic immunomodulatory medication.

Shi: Currently, these are the biologic medications and other pills that you take to help calm inflammation in a targeted way. Oftentimes, we see people start this type of treatment too late, when irreversible damage in the skin has occurred, and also when there are signs and symptoms of systemic inflammation.

Shi: So HS is more than just skin deep. When there's systemic inflammation, it manifests on the skin, but people will also have signs of fatigue, mood changes, depression, anxiety, joint pain, and so forth. So that's the pivot point of using systemic medications. And when we are at a good point — and that's also up for debate — when the skin and the disease are under control, this is when we bring in the surgeons to clean up the permanent structures that have tunnels. That can offer a regional cure, and after surgery, patients should stay on some kind of medical management to prevent recurrence.

Pathak: That's really interesting in terms of what you say about surgery offering a regional cure, because the way you're describing HS, it can be sort of global in multiple regions on your body, and you may need surgery in one area and not benefit from it in another. So can you talk a little bit about that piece in terms of determining that someone is a surgical candidate versus not?

Shi: Yeah, so that's a really interesting thing that we're still working out. We don't have a good way of predicting who's going to need lifelong medications even after surgery and who, after surgery, can really be in, quote-unquote, remission. But let's walk through a case scenario. For example, let's say a patient has had a not-optimal response to topical things and/or antibiotics and hormonal modulation, and the discussion of starting a biologic medication is here.

Shi: They're on a biologic medication, things are better, they're stable — then a surgery conversation starts. The cleanup crew are the surgeons. I think of this analogy as: the body’s inflamed, the house is on fire. Medication is kind of like the firefighter — the hose — using medications to hose it down so it changes from a forest fire to kindling. But we know that if we don't have the cleanup crew or the surgeon to come in and remove the debris, that kindling fire, in the right setting, just needs a blow of wind or something to light the house back on fire.

Shi: And that’s often what we see — that you lose efficacy over time with your biologic medication and it recurs. So there’s kind of an optimal surgical window when the disease is calm to remove that, and afterwards, we follow the patient very closely. Because in some people, there are cases where they can come off biologics and they’re good — they won’t get HS elsewhere for years to come. That’s the best-case scenario in some individuals.

Shi: But we see many, many cases where, if biologics are not continued or graduated to another medication in the long term, once, say, their armpits are operated on, they will get HS in areas they didn’t have it before — like the back of the neck or the buttock. So the body has this inertia to be inflamed and make more HS lesions in some of these individuals.

Pathak: Can you tell us a little bit about other comorbidities that are fellow travelers with HS? And do some of these comorbidities lead to, I guess, more severe forms of HS or more lesions across the body?

Shi: We see HS together with metabolic syndrome, and that's a constellation of conditions including diabetes, hormonal imbalance, and overweightness. In women, we often see polycystic ovarian syndrome or symptoms associated with polycystic ovarian syndrome — so abnormal periods, difficulty losing weight, pre-diabetes or diabetes, or this condition called hirsutism, where women grow thick hairs in areas that usually men grow hair, like the beard area or chest.

Shi: So those are kind of the physical signs that may be associated with HS as a comorbid condition. Now, there are also psychological things that can be associated with HS. To name a few — depression and anxiety are very high in the HS population, and sometimes it's a chicken-and-egg question. Like, you know, we talked about the root cause, right? Is it the HS itself causing anxiety and depression? Or is it the systemic inflammation having a direct effect on our central nervous system and our neurotransmitters — the chemicals in our brain — causing this depression and anxiety?

Shi: Either way, it's a cycle that we help patients break by treating their HS systemically when appropriate.

Pathak: That's really helpful because there are potential other comorbidities along with the HS. Can you talk a little bit about the multidisciplinary team that ideally would be taking care of a patient with HS?

Shi: Yeah, so we think about the patient journey a lot. You know, how do we get them to the right team, the right person? I think traditionally the frontline providers are our primary care providers, our pediatricians, and our emergency physicians and gynecologists, who many times are the first person to see the HS lesion or the first person the patient goes to.

Shi: And when we have appropriately diagnosed HS with the frontline providers, regardless of severity, we encourage collaborative management and referral to dermatology. When the disease is more than mild, typically the dermatologist acts as the principal provider to help orchestrate the direction of treating HS. And when the person is seen in a dermatology office, the right thing to do is to ask about comorbidities or associated symptoms like diabetes and polycystic ovarian syndrome, and potentially do some screening workup.

Shi: For example, if joint pain is highly associated with HS, maybe there's a rheumatologic overlap, and so a referral to a rheumatologist should be made. And if it's identified that there are mental health concerns related to their HS, then collaborative management with a mental health specialist or psychiatrist should be initiated.

Shi: Overall, we see that the more people on their care team, the better. The challenge in our healthcare system is how to get all these people to sit down in the same place and have access to the same information to take care of that one patient.

Pathak: Yeah, I mean, that's a great point, and I think that kind of leads me to my next question, which is the patient as advocate for themselves. So what are your recommendations for patients that need this multidisciplinary team? How do they talk to their providers to ensure that information is being shared among all of these providers on the team, and how do they ensure that they're getting the best care possible for whatever stage they are in with their condition?

Shi: So if we can figure this roadmap out together, that would be golden. I would start by saying I advocate for the patient themselves to believe that they are the experts in HS. It is not me, it's not the doctor or the provider sitting in front of them — they live in their own skin. No matter what anybody else tells them, they are the experts in their own body, in their own skin. And only when they advocate for themselves do they find the right person to listen.

Shi: And it's almost like dating — you don't find the right person the first time you date somebody. Keep searching for the provider that's right for you. This is especially true when you're looking for the principal provider, like a dermatologist. It's helpful to get information ahead of time, to be well-informed and be prepared for a dermatology visit.

Shi: There is information out there on the internet that may not always be accurate, and so there are patient guides that have been published by experts in HS, both patients and healthcare providers. There are free apps that are developed by healthcare professionals specializing in HS that one can use to track their symptoms and bring their report cards — like a one-page summary — to their providers to shorten that runway of, say, 15–20 minutes in the dermatology office.

Shi: “Papaya,” for example, is a free HS app that patients can download to track their symptoms, take pictures, and have it be a one-stop shop for them.

Shi: So be informed before walking into a skin doctor's office, and also ask the doctor straight in the face, how many of these patients you see, do you specialize in HS? If not, can you refer me to somebody who specializes in HS or under the HS Foundation website? There are HS specialty clinics and clinic finders all over the country.

Shi: Keep searching for the right person for you.

Pathak: Great. You've already listed so many helpful resources. Could you suggest a few more with regard to support groups, other online communities that you might be aware of that would be helpful to a listener?

Shi: Yeah. There are many out there, and many of them partner with healthcare providers like myself. So, to name a few, Hope for HS is one of them, and HS Connect is another one of them.

Shi: And they have both in-person and online support groups and resources that are developed together with the community. So the last thing a patient wants with HS is to feel like they're on an island. Joining support groups feels like they have a peer, they have a mentor, they have someone that is experiencing the same thing to share this experience.

Shi: And I think that's been tremendously helpful for my patients. They feel so relieved after they have access to these resources, and they feel that they're part of a community.

Pathak: That's—

Shi: Really—

Pathak: Really helpful. And in our last few minutes together, I just wanted to take a giant step back to sort of the beginnings of the journey.

Pathak: Because you mentioned that it can be very confusing initially when you have what we may call in layman's terms boils or pimples that come and go. So you may not necessarily recognize that you might have more of a systemic inflammatory condition like HS. So what are some of the key things that folks who may not already be diagnosed need to be aware of in terms of suggesting to them that, “Hmm, this is something more than just a one-off pimple or a one-off boil.”

Pathak: This is something I need more help diagnosing.

Shi: I think before we present to the doctors, we always try to just wait for it to go, right? Hoping it won't come back. And you know, we have all experienced that—maybe I have a headache today, maybe I'll just wait it out. Oh, it's gone. We're good—until it comes back.

Shi: So it's just one of those things where, like, you fool me once, fine. You fool me twice, okay. But if it comes back a third time, wait a minute—this is not normal. Especially when it's the same region over and over again. It's not just by chance, right? We can have a pimple here and there; you know, we have all had pimples. But this is not your typical pimple.

Shi: And over time, for most individuals, they leave marks. They may not necessarily leave marks the first and second time, but over time they will leave a scar. They will leave kind of a divot, right? And that's not normal. I mean, yes, pimples cause scars, but these are very classic, kind of cigarette paper-like scars that are round.

Shi: And for people who are later on in their journey and progression, you will see these marks don't go away. They become more and more frequent. They become more and more intense, and you see the tunnels forming. This is a juncture to really think about how to present to healthcare providers a little bit earlier and not wait it out.

Pathak: That's great. Such a helpful, such an informative conversation. I want to thank you so much for your time. And in our last few minutes together, just any final thoughts—anything you wish I had asked that I haven't asked you?

Shi: I think some of the things with HS is, because this is such an intimate area, we often think about the pain, the itch, the daily activities, and how do we get to school and work. But there are a lot of intimate questions that we don't ask, especially when we have a short visit with the provider. So I encourage the patient to think about what in their daily life is bothered by their HS.

Shi: For example, I always try to ask about intimacy with sexual partners, because it's sometimes always the last thing people want to talk about when they're in the doctor's office, but it is a huge part of people's lives. That's one.

Shi: Two, I think it's important to set goals for yourself and for your healthcare providers together. What are some of the short-, intermediate-, and long-term goals for HS? And most people work better when they have kind of a report card or something to reach out for, right? And this could be anything.

Shi: For a provider, it could be like maybe you could potentially do less antibiotics or less medications, or fewer surgeries or acute visits. Somebody told me, “I want to go ride a bicycle.” Somebody told me, “I want to wear white again. I don’t want to wear dark colors because I’m afraid of drainage or accidents of leaking in public.”

Shi: So anything is possible. Reach for the sky. Think about how you want your life back, and let’s define that roadmap with your provider and get there together.

Pathak: It's really beautifully stated, and I want to thank you so much again for your time and for all of the helpful information.

Shi: The pleasure is all mine. Thank you for bringing this disease to everybody’s attention.

Pathak: Thank you so much for being with us today. We’ve talked with Dr Vivian Shi about HS. My key takeaways from this discussion are:

Pathak: Number one, don’t ignore recurring bumps or boils. If you’ve had painful lumps that keep coming back to the same spot on your body, it may be more than a pimple or an ingrown hair. HS often starts this way, and recognizing the pattern early on can help get the right diagnosis and connect you with care sooner. And that’s important because HS can have serious complications, from scarring to developing tunnels under your skin.

Pathak: Number two, HS is not caused by poor hygiene. Many people with HS are told to just shower more. But this is a myth. HS is a chronic inflammatory condition with genetic, hormonal, and environmental factors contributing to it. It’s not your fault, and it is not contagious.

Pathak: Number three, HS can be painful, stressful, and isolating—but you are not alone. There are communities and care providers ready to help you with your HS diagnosis, from dermatologists who specialize in HS to support groups like Hope for HS and HS Connect. Giving and receiving support within a community can help you feel empowered, address problems, and identify effective solutions. You do not have to navigate HS on your own.

Pathak: And last, learning how to advocate for yourself in a healthcare environment, at work, and in your relationships can have positive impacts on your experiences with HS. Bringing your questions to your healthcare appointments, tracking your symptoms, and asking for referrals can make a big difference in building a care plan that works for you.

Pathak: To find out more information about HS, make sure to check out our show notes. Thank you so much for listening. Please take a moment to follow, rate, and review this podcast on your favorite listening platform.

Pathak: If you’d like to send me an email about topics you are interested in or questions for future guests, please send me a note at [email protected]. This is Dr Neha Pathak for the WebMD Health Discovered Podcast.