Selina Ferragamo, 27, first started experiencing hidradenitis suppurativa symptoms in high school, but she wasn’t diagnosed with the condition until she was 22. Hidradenitis suppurativa (H.S.) is a chronic, inflammatory condition that causes painful bumps under the skin, often in sensitive areas like the armpits, groin, and beneath the breasts. The bumps and lesions can burst, releasing pus and blood and causing a lot of pain. Sometimes, the condition causes tiny tunnels beneath the skin connecting lesions, and it can also cause scarring.H.S. is a very visible and uncomfortable condition, so along with the physical pain, it can also impact emotional well-being. Self-inflicted body shaming and a lack of self-confidence are common. Ferragamo personally felt a lot of shame about the boils, cysts, and lumps brought about by her H.S., as well as the scars left behind by the condition and the surgeries she’s had to treat it. She says these negative feelings can make it hard to wear sleeveless shirts and bathing suits, or even just to get ready to go out to a party.When in a flare, shaving can irritate H.S. bumps and lesions, worsening the condition and making it more painful. But having hairy armpits adds another layer of shame, Ferragamo says. After a boil ruptures, she’ll often place gauze under her armpits, which people sometimes comment on. She also says that people—and even doctors—who didn’t understand H.S. made her feel like it was her fault: that she wasn’t showering enough, that it was due to her weight, that she wasn’t hygienic, that she wasn’t changing her razor blades enough. All of this blame really impacted how she viewed herself.Over the past few years, Ferragamo has managed to overcome a lot of her body shame and embarrassment related to H.S. Here is her story, as told to health reporter Beth Krietsch.Between May 2017 and August 2018, I had three surgeries on my armpits—my hidradenitis suppurativa flares were getting so big and painful that I wasn’t able to move without excruciating pain anymore. After my surgeries, it took me a long time to be comfortable wearing tank tops. If I lift my arms, my surgery scars are pretty noticeable, and you can also see the scars from the back of my arm because of how I was stitched up. It gets really hard sometimes, especially if I’m trying to find an outfit for a party or event. When I was getting fitted for my sister’s wedding, the tailor saw the scars underneath my armpits and she asked if I had cancer. I was kind of taken aback because I wasn’t really expecting anyone to say anything about it. I was like, “Oh no, it’s just surgery scars,” but it was really uncomfortable.Sometimes comments like that really get to me and make me feel self-conscious. I used to get really embarrassed talking about H.S. because it’s not the most pleasant thing to describe. I get nervous that people will judge me and think I’m disgusting, and then those thoughts spiral in a negative way. So it bothers me when people draw attention to my insecurities. But I try to remember this is not my fault—that this is an uncontrollable disease that I have to live with. I saw a meme that said something like, “those scars are showing the history of everything that you’ve been through.” So I try to see it that way.
11 p.m.I read a few pages of a book until I feel sleepy. I find that stress can trigger flare-ups, and my mind is always racing with a list of things I need to do for my family, for my job, and for my volunteer work. I find that reading or listening to audiobooks provides a break from focusing on my stress.Day 2 (Monday)6 a.m.I wake up, make my bed, and take my first shower of the day. My shower routine revolves around H.S. management. I use inexpensive antibacterial hand soap to wash areas where I typically get flare-ups. Then I use a hand shower attachment to rinse that off and put a benzoyl peroxide wash on any active lesions. I leave this on for the rest of the shower while I wash the rest of my body and hair.6:45 a.m.I make my oldest son breakfast, help him gather school supplies, and make sure that he walks to the bus stop on time.7:45 a.m.My nine-year-old wakes up. I make him breakfast and then drive him to school.8:40 a.m.It’s gym time! I used to be in so much pain due to H.S. lesions that I couldn’t even shift my weight comfortably—let alone get to the gym. Today is leg day, so I do some deadlifts, leg press, leg extensions, and standing calf raises.11 a.m.Today, I volunteer a few hours for Hope for H.S., a patient-led nonprofit that I joined eight years ago. Hope for H.S. stemmed from a support group my doctor created for people living with the disease. I joined in 2014, and I, along with others in the group, realized that there is a lot of misinformation about H.S. and not enough treatment options. Rather than wait and hope that things change, we decided to do what we could to advance the cause and created this nonprofit. I get a sense of accomplishment and purpose knowing that I can help others living with the disease.5:15 p.m.I start making dinner for my family. Tonight, we have spaghetti and meatballs with salad.6 p.m.At dinner, we play a game called “Roses, Thorns, and Buds,” which is how we learn about everyone’s day. We each share a rose, which is our favorite thing that happened, a thorn, or our least favorite thing that happened, and a bud, which is something we plan to do or hope to do.7 p.m.It’s a nice evening, so I take a walk around my neighborhood after dinner. I always invite my husband and kids along, but no one joins me tonight. I use the time to catch up on my audiobook.10 p.m.After the kids go to bed, I start my nightly routine.Day 3 (Tuesday)6 a.m.I wake up, make my bed, shower, get the kids to school, and head to the gym.8:40 a.m.Today I’m focusing on my upper body at the gym. I primarily stick to strength training because I actually enjoy it! Plus, many forms of cardio can cause friction, leading to flares.
After her diagnosis, Kristen received a pamphlet from her doctor’s office explaining how to manage hidradenitis suppurativa at every stage, which she says was invaluable. “That was probably the most helpful thing I’d ever seen in the years I’d researched what I could possibly have,” Kristin says. Knowing that she had stage two helped Kristin better understand her physician assistant’s recommendations. 3. How is hidradenitis suppurativa treated?Your doctor may recommend a combination of prescription medications (such as topical antibiotics and steroid injections), changes to your skin-care regimen (like using an antiseptic wash when showering such as chlorhexidine 4% or benzoyl peroxide), and potentially surgery to remove the bumps, according to the Mayo Clinic.Kristin was relieved to learn she didn’t need more surgery. After some trial and error, she found a winning combination that helps reduce her hidradenitis suppurativa flare-ups: She washes her thighs with antibacterial soap and wears underwear that extends to the middle of her thighs, reducing friction and sweating, both of which can worsen flares. “Between the shorts and the soap, I have been in control of my condition ever since,” she says. “If I go one day and I wear regular underwear, sweat a lot, or have a lot of friction, it’s game over.”It’s important to remember that you’re dealing with a complex condition, so it may take some time to find a treatment plan that works for you. Ask your doctor how long you should try a particular treatment before concluding it isn’t working and moving on to something else.4. Does laser hair removal make sense for me?Teresa K., 32, was diagnosed with hidradenitis suppurativa in 2017; she says laser hair removal has brought her great relief. According to the American Academy of Dermatology (AAD), having less hair on areas with H.S. can reduce the number of lumps you have. Laser hair removal is generally more effective for mild cases and can require at least three laser treatments, given once every four to six weeks. It’s also worth noting that people with dark skin have a greater risk of hyperpigmentation from certain types of lasers. The procedure also can be less effective for people with light hair, according to the Mayo Clinic.5. Can hidradenitis suppurativa affect my mental health?Dealing with chronic pain and recurring lesions can definitely take a toll on your mental health. Indeed, people with hidradenitis are more likely to experience depression and generalized anxiety, according to a 2021 study published in the Journal of the American Academy of Dermatology4.“If you are struggling to cope with H.S., let your doctor know,” Kelsey Flood, MD, a clinical instructor in dermatology at the University of Cincinnati College of Medicine, tells SELF. “We want to help take care of you as a whole person, not just your skin.” Your dermatologist can refer you to a therapist who is experienced working with people who have chronic conditions, or they can refer you to a psychiatrist if you are interested in pursuing medications such as antidepressants.6. What are some misconceptions about hidradenitis suppurativa?Because H.S. looks similar to an infection, people sometimes think it’s contagious or the result of poor hygiene. But this couldn’t be farther from the truth. “Hidradenitis suppurativa is an inflammatory medical condition—it is not an infection,” Dr. Mayo says. It occurs when hair follicles become blocked, and experts aren’t sure why this happens in the first place. It could be related to genetics, hormones, excess weight, or smoking cigarettes, according to the Mayo Clinic. The bottom line? H.S. is not contagious so you don’t need to worry about giving it to a friend, family member, or partner.7. How can I connect with others who have hidradenitis suppurativa?Getting diagnosed with H.S. can feel isolating, but remember: You’re not alone. Dr. Flood recommends checking out the HS Foundation to find a support group and an HS patient card, which explains what the condition is to those who are unfamiliar with it (For example, it can be useful if you need medical care while traveling.) Dr. Flood also recommends Hope for HS, a nonprofit advocacy group, to anyone looking for support.Sources:BMJ, Hidradenitis Suppurativa: A Common and Burdensome, Yet Under-Recognised, Inflammatory Skin DiseaseDermatology, Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare SystemStatPearls, Hidradenitis SuppurativaJournal of the American Academy of Dermatology, Comorbidity Screening in Hidradenitis SuppurativaRelated:
There are various potential hidradenitis suppurativa (H.S.) causes to be aware of, because there isn’t just one single factor that fuels the development of the skin condition. Researchers still have a lot of questions about why H.S. occurs in certain people, including how its root causes can help experts better understand hidradenitis suppurativa treatment options.Hidradenitis suppurativa is a chronic condition that is characterized by painful lumps that form under the skin. Symptoms typically occur on areas of the body where your skin rubs together (like the armpits, groin region, under the breasts, or on the butt) and the bumps or sores can leak pus or odorous fluid, according to the Mayo Clinic. In severe cases, tunnels may develop under the skin, connecting the lesions to one another.Somewhere between 1% to 4% of people in the U.S.1 have hidradenitis suppurativa, and for many of them, it can be physically and emotionally painful. People with hidradenitis suppurativa often say they feel self-conscious about the way their skin looks because of the stigma associated with the condition. That’s why understanding the risk factors for hidradenitis suppurativa—and knowing that you aren’t to blame for having the condition—is so important. Here’s what experts know about hidradenitis suppurativa causes so far.What do experts know about hidradenitis suppurativa causes?There is no clear-cut answer for what causes hidradenitis suppurativa, both in terms of what leads to individual bumps forming and what why the condition appears in certain people but not others. Experts previously theorized that hidradenitis suppurativa developed when apocrine sweat glands2—which are found in the armpits, groin, and breasts (the most commonly affected areas)—became infected. However, researchers later discovered the condition originates in hair follicles, not in the apocrine sweat glands, which led to the current theory that individual lumps are caused by blocked hair follicles3.But that is only part of the story, Christopher Sayed, M.D., associate professor of dermatology at the University of North Carolina at Chapel Hill, tells SELF. In addition to follicular occlusion, meaning the hair follicles become blocked and then ruptured, the development of hidradenitis suppurativa is also associated with having some kind of inflammation in the body, Dr. Sayed explains.Generally, your immune system attacks foreign substances it perceives as harmful, such as pathogens like the flu virus, to try to keep you healthy, according to the Cleveland Clinic. During this process, your immune cells set off an inflammatory response to try to facilitate healing, which can sometimes cause redness, swelling, and pain.With hidradenitis suppurativa, however, researchers think your immune system overreacts to benign situations, like blocked hair follicles, and sets off the inflammation process in that general area as a result. Over time, chronic inflammation can cause more abscesses to form2, which in turn can lead to more pain, swelling, and other uncomfortable symptoms, depending on the hidradenitis suppurativa stage you’re in. This is why hidradenitis suppurativa is considered an inflammatory condition. (Just to be clear, hidradenitis suppurativa isn’t considered to be an autoimmune disease, which is when your immune system mistakenly attacks healthy cells in your body.)It’s also important to understand that hidradenitis suppurativa is not a disease that is caused by a person’s individual behaviors—and you definitely can’t spread it to others. For example, you can’t develop the condition from having poor hygiene and you can’t pass it on through bodily contact because it’s not contagious, according to the Mayo Clinic. “If improved hygiene fixed hidradenitis suppurativa, there’d be no hidradenitis suppurativa,” says Dr. Sayed.
Managing a skin condition like hidradenitis suppurativa (HS), especially after your initial diagnosis, can feel overwhelming at any point in your treatment journey. But understanding the nuances of the disease, including the various hidradenitis suppurativa stages, can help you better care for your skin—and knowing how to treat your particular symptoms can make you feel empowered.On the other hand, if you haven’t been diagnosed with the skin condition but think you might have it, learning about the stages of hidradenitis suppurativa can be helpful when discussing your symptoms with a doctor. Characterized by recurrent, painful, under-the-skin lumps, hidradenitis suppurativa is often misdiagnosed for years because its symptoms may seem similar to other skin issues, such as boils or infections. That’s one reason why it can take some people up to 12 years to get a hidradenitis suppurativa diagnosis after symptoms first appear, according to a 2015 paper published in Mayo Clinic Proceedings1. Another study also suggests it can take people an average of seven years to get their condition correctly identified2. But getting treated early is really important to minimize your pain and potential complications. So, what does hidradenitis suppurativa look and feel like in its various stages? Ahead, SELF asked experts to break down its symptoms, from early manifestation to severe progression.First, what is hidradenitis suppurativa?Hidradenitis suppurativa (HS) is marked by painful lesions that have formed under the skin. These sores and lumps often burst open and release pus and blood, according to the Genetic and Rare Diseases Information Center (GARD). They can look like boils, and over time they may lead to the development of tunnels under the skin called sinus tracts. These lumps most commonly form in areas where the skin rubs together, so people with the condition often discover them under the armpits, in the groin area, and under the breasts. The wounds from these lesions may heal but leave scars that look like a rope or pits in your skin, according to the Mayo Clinic.Experts aren’t sure why some people develop hidradenitis suppurativa but theorize hormonal fluctuations, genetics, and environmental factors could all play a role in causing the condition, which overwhelmingly impacts people assigned female at birth, according to the American Academy of Dermatology Association (AAD). About 30% to 40% of people with hidradenitis suppurativa have at least one family member with the condition and researchers have identified several genetic mutations that may increase your risk of hidradenitis suppurativa, according to GARD.Researchers believe the condition starts in your hair follicle when it becomes clogged with a protein called keratin that serves as a building block for skin, hair, and nails, according to the AAD. When your hair follicle has more keratin than it can hold, the entire follicle explodes, which causes a deep, painful lump filled with pus to form. From there, other hair follicles can become clogged, leading to more HS lesions.Back to topWhat are the hidradenitis suppurativa stages?Similar to many health conditions, people can experience varying hidradenitis suppurativa symptoms. Doctors classify the severity of the disease using the Hurley stages, which was developed by dermatologist HJ Hurley in 19893. The scale was created to help other doctors quickly determine the best hidradenitis suppurativa treatment based on how far the disease had progressed. The Hurley scale is the commonly used system and details three hidradenitis suppurativa stages3. Here’s what to know about each stage:Hidradenitis suppurativa Hurley stage IHurley stage I is considered early-stage hidradenitis suppurativa. “Stage one just means that there are bumps that come and go4,” Christopher Sayed, M.D. associate professor of dermatology at the University of North Carolina at Chapel Hill, tells SELF. In this stage, there are no scars or tunneling underneath the skin. Some people who are diagnosed with stage 1 hidradenitis suppurativa may go on to develop additional symptoms while other people never have more severe progression of the condition, according to Dr. Sayed. “It’s very hard to predict who is going to get worse,” he says. One small study of 225 people found that people who were diagnosed with stage 1 hidradenitis suppurativa and eventually developed a more severe case of the condition spent an average of nine years in the first stage, according to a 2018 paper in Dermatology6.Hidradenitis suppurativa Hurley stage IIDuring Hurley stage II, lesions reoccur more frequently, can break open, and may scar when they heal. There’s also the potential for tunneling to occur under the skin at this stage, Dr. Sayed says. This is because when a person develops abscesses more often, there’s simply more opportunity for tunneling and scarring to form in those who may be susceptible.
Hidradenitis suppurativa (HS) is a complicated condition that’s easily confused for other skin issues, like acne or boils, so it can be tough to get an accurate diagnosis the first time you see a doctor about your symptoms, according to the American Academy of Dermatology (AAD). In fact, reports show that it can take some people anywhere from 7 to 12 years to get a hidradenitis suppurativa diagnosis after they first start showing signs of the disease, according to a 2015 paper published in Mayo Clinic Proceedings1.Complicating things further, many people don’t seek medical help until they’re experiencing a major flare-up. “Patients often end up going to the ER or urgent care seeking acute treatment rather than seeking care with an established provider,” Kari Martin, M.D., a board-certified dermatologist at University of Missouri Health Care, tells SELF. So, you may be misdiagnosed with something like an infection if the doctor you’re seeing isn’t as familiar with skin conditions as a board-certified dermatologist, who is specifically trained to parse out the subtle nuances in thousands of skin-related health problems, Dr. Martin says.And without proper treatment, flares will continue to happen. “Hidradenitis suppurativa is not going to go away on its own,” Dr. Martin says. “If you’re not doing some preventative care to treat the underlying disease, then you’re just putting on a Band-Aid.”This process can feel really frustrating, confusing, and even isolating—but making sure your concerns are heard is the first step in finding relief. Even though it shouldn’t fall on your shoulders to advocate for the best medical care you can get, taking a few steps to ensure you’re doing everything that is in your power to take control of your health can make the process a bit smoother. So, if you think your unexplained skin symptoms might be pointing to hidradenitis suppurativa, here are five things you can do to receive a proper diagnosis and treatment plan you feel comfortable with.1. Research hidradenitis suppurativa to better understand the condition.Having a deeper knowledge of hidradenitis suppurativa, including its unique symptoms and risk factors, can help you come armed with knowledge when you’re ready to discuss the condition with a doctor.Hidradenitis suppurativa generally causes inflamed, discolored, swollen bumps that can fill with pus and break open. Sometimes, the condition can also cause scarring and tunneling under your skin. Usually, people repeatedly get these sores and abscesses in areas where the skin folds, like the groin, armpits, under the breasts, and buttocks, and the lumps reappear in the same spots, which is one way to distinguish the condition from boils. (Boils are commonly caused by a bacterial infection, so you may get just one boil and not have one for many years—or ever again.)The exact causes of hidradenitis suppurativa aren’t fully understood, but experts say it is not directly caused by an infection, even though your lumps may become infected if they break open and bacteria gets in, according to the Mayo Clinic. Some people get hidradenitis suppurativa flare-ups around their menstrual cycle, which is another clue that the lumps you’re dealing with probably aren’t boils.
For the 1 in 100 people in the U.S. living with hidradenitis suppurativa1, dealing with the condition’s characteristic deep, painful lumps really affects their quality of life. Sometimes, hidradenitis suppurativa lesions can break open and leak blood, pus, and other odorous fluids, and your skin can be more sensitive when this happens2. These sores usually appear in your armpits and groin, so shaving or even just sweating can irritate your skin during a flare-up. That’s why it’s important to be careful about how you treat your skin if you have hidradenitis suppurativa.Generally, people rely on prescription medications, including topical antibiotics, steroid injections, hormonal pills, and biologics to treat and manage hidradenitis suppurativa. (Keep in mind that your treatment options may change over time based on new research and newly available therapies. Make sure you have ongoing conversations with your doctor about which treatment options may be best for you.)In conjunction with your dermatologist-prescribed treatment plan, doing your best to treat your skin as gently as possible can help you feel better during a flare-up and possibly avoid getting an infection. SELF asked dermatologists for their advice on how you can best care for your skin on hidradenitis suppurativa. Here’s what they said:1. Consider using an acne cleanser on your lesions.Hidradenitis suppurativa isn’t caused by an infection or because you don’t clean your skin well enough. But you can develop an infection if bacteria gets into your open sores, according to Sonal Choudhary3, M.D., dermatologist and dermatopathologist at the University of Pittsburgh department of dermatology. Using an antibacterial wash on your lesions that helps kill bacteria can help prevent that from happening, Dr. Choudhary explains. “When skin is inflamed or open, bacteria easily overgrows,” Dr. Choudhary tells SELF.If you’re buying an over-the-counter wash, look for products that can be used every day to find something that isn’t too harsh for your skin, Dr. Choudhary says. (Or you can ask your dermatologist about using a prescription antibiotic cleanser instead.) Even then, you want to be careful of overly reducing your skin’s natural bacteria, which helps protect you from potentially infectious pathogens, by cleansing too often. Instead, try using an acne wash once a week and seeing how your skin reacts, the Mayo Clinic recommends4. If your skin doesn’t become dry or irritated, then you can gradually increase how often you use it up to once per day.2. Avoid scrubbing your skin.You might feel like you need to scrub or use a loofah to get clean, but that can make things worse. “Scrubbing can visibly break the skin open in areas with hidradenitis suppurativa and, in general, opens up the skin barrier to more infections and allergens,” Dr. Choudhary says. Even if you don’t get an infection or have active lesions, your skin can get irritated from washing vigorously. To clean your skin as gently as possible, the Mayo Clinic4 recommends soaping up using your hands rather than with a loofah or washcloth. This can also help you avoid getting an infection since many loofahs and washcloths can be laden with bacteria, which can enter your body through tiny cuts or open sores.3. Be careful with your hair removal methods.Waxing and shaving during a hidradenitis suppurativa flare can make things worse, according to Angela J. Lamb5, M.D., associate professor of dermatology and director of the Westside Mount Sinai Dermatology. Both can cause things like ingrown hairs and inflamed hair follicles, which will only add to your discomfort during a flare.
I was diagnosed with hidradenitis suppurativa when I was 15. This chronic condition causes extremely painful lesions that commonly appear on the bust and around the groin1. At the time, my symptoms were minimal, so I didn’t understand how hidradenitis suppurativa and sex were related or how the condition would impact my relationships.Dealing with pain from hidradenitis suppurativa groin flares, worrying what others will think about your lesions, or being rejected by a partner or potential partner are all things that can really affect your sex life. Since people don’t often talk about hidradenitis suppurativa, especially in relation to sex, you may feel like no one will understand your condition. You might even avoid romantic relationships because you’re embarrassed about your flares, which can sometimes have an odor. But trust me, you’re not alone. There are other people with hidradenitis suppurativa, and many of them enjoy active, healthy sex lives. To illustrate as much, I talked to a few other people with the condition, in addition to experts, for their advice on navigating conversations about sex with hidradenitis suppurativa. Here’s what they said.1. Talk about hidradenitis suppurativa well before having sex whenever possible.I had a very painful sexual experience with someone who didn’t understand my condition. I hadn’t explained hidradenitis suppurativa to my partner before we started having sex, and he mistakenly thought the red marks and small cyst on my groin were symptoms of a sexually transmitted infection. I tried explaining my condition, but he left, and my confidence was shattered. It took several years before I felt comfortable trying to have sex again. When I reached that point with someone I was dating, I explained on our third date that I had a skin condition that causes cysts. My partner was very understanding and game to have sex when we went back to his place that night.Danielle DiCamillo2, LCSW at Cohesive Therapy NYC, works with people who have chronic health conditions. She recommends having a discussion about hidradenitis suppurativa well before sex, rather than right before sex, whenever possible. You’ll have more time to think through your feelings and any boundaries you want to set during sex this way. “When able to do so, you are able to better set boundaries and have a possible action plan for the ‘what-ifs’ that may show up,” DiCamillo tells SELF. This can also help you feel more in control and offer some sense of safety and predictability when managing an unpredictable condition, she says. Additionally, the other person has time to process and understand your condition, too.Of course, you might not have time to talk about hidradenitis suppurativa well before every single sexual encounter, in which case you might feel even more vulnerable talking about your condition if you’re already in the midst of getting intimate, DiCamillo says. In those situations, it can still be helpful to have thought about what you want to communicate in advance, even if that means basically following a script of sorts. Sophie R., 26, who was diagnosed with hidradenitis suppurativa in 2016, says she talks about her condition whenever she knows she’s ready to have sex with someone. And sometimes, that’s just a few minutes before she actually has sex. “I always make it really clear that it’s okay if they don’t want to continue after I tell them,” Sophie tells SELF. “I usually just say, ‘So, I have a skin condition that leaves red marks and some cysts. They can be painful so please avoid them, but it’s not infectious and there’s nothing to worry about.’ Most people just say ‘okay’ and get on with things,” Sophie says.2. Actually let your partner know about your boundaries.You may feel like it’s hard to explain your pain or discuss why you don’t want to do certain things when having sex with hidradenitis suppurativa. But knowing each another’s boundaries is an important aspect of having comfortable sex, no matter what health conditions you may have. It helps to think through your preferences well before having sex so you have time to reflect on what’s right for you.