Hidradenitis Suppurativa Stories
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Patient Story: Hidradenitis Suppurativa (HS)
V.F., 29 years old, female
As a fourth-year medical student, I was under a lot of stress all the time. However, it did not feel different from the stress of first, second, and third year. To me, I was not experiencing more severe stress, just the same.
I developed this painful bump that looked like an ingrown hair that was infected. I initially thought it might have been caused by shaving in my bikini area. I let it be for 2–3 days and it kept getting bigger and more painful. I had never been one to poke things on my skin, especially in such a sensitive area. I tried putting ice on it for the inflammation and nothing improved.
I was doing clinical rotations outside my home country, so I did not have working health insurance. I texted my gynecologist back home and she thought it was an ingrown hair and sent me topical clindamycin. However, I did not feel there was any improvement.
I found a primary care physician (PCP) where I was living at the time. She saw it and said it looked like a regular boil and that it should improve with a short course of antibiotics. I had been doing rotations for a while and thought it could be Hidradenitis Suppurativa (HS), but I was not a doctor yet.
I was given Bactrim for 10 days and on day 8 I developed an allergic reaction to it. My whole body broke out in a full-blown rash, including my face. I was feeling mostly well, and although doctors were saying it must have been viral, none of my close contacts were sick. It got worse because I kept taking Bactrim to complete the antibiotic course. Long story short, as soon as I took my last dose, everything was better. My “boil” did not go away until a week later, but it came back and back and back for the next 4 months in the same area.
I was so uncomfortable and in pain while doing my clinical rotations—standing, walking, sitting down—because the area of my lesion did not allow me to find comfort while doing any of these. It was not until December, when I was able to get a few days off from clinical during the holidays, that I visited my dermatologist back home. Immediately, just from hearing my story without me showing her my lesion, the doctor knew it was HS. I was relieved to know I was not “crazy” when I thought of it at first and that maybe there would be another way to tackle this and manage it.
My dermatologist gave me two months of antibiotics since I had already tried topical clindamycin without success. I was freaked out about being on antibiotics for two months and everything that could go wrong with that (as a medical student I thought about the worst-case scenario, Clostridioides difficile [bacteria that takes over when antibiotics, especially with prolonged use, kill the good bacteria in your gut). However, I knew that I had to at least try and see if it worked.
Unfortunately, I still got flares during the 2‑month antibiotic course, and I was not doing well, especially during my surgery rotation where I had to feel and be at my best. I managed to pull through even with my flares. I had maybe a month free of flares, then I went back home to do my Obstetrics and Gynecology rotation. I was used to being on my own and studying, and being back home brought a lot of distractions in between the rotation and studying that gave me so much stress. I ended up having 5 flares in 4 weeks. It was so bad.
I went to my dermatologist. She gave me a steroid injection and recommended I have a procedure done. At this point, I did not care what I had to do, but I knew I had to do something because this was not the way to go through clinical rotations.
My sister knew someone who knew someone, and I literally got called one day after my rotation and was told that the morning afterward I was going to be seen by a surgeon and have the procedure done at his office. The next morning I went, and although hesitant at first because I had a recent flare, the surgeon understood my cry for help and did the procedure. I got absorbable sutures because I was leaving home in a week to continue rotations elsewhere and was not able to go for a follow-up post-procedure. The procedure itself did not hurt nearly as much as my HS flares did. I was so happy and relieved that I was able to get this done.
It was uncomfortable with the sutures during the last week and a half of my Obstetrics and Gynecology rotation back home before I left, but I knew it needed to be done and my preceptors were very understanding. A few weeks after the procedure I was doing okay and making sure the area was clean, and then little by little all of the sutures came off. Yet, a week after the sutures fell off, I noticed part of my incision opened back up. I was worried that it could get easily infected due to it being in the bikini area.
I was lucky enough to have gone through my surgery rotation, and I messaged my preceptor. He quickly called back and told me to go to his office the next day. When I went to see him, he helped clean up the area and told me not to worry, that I should clean the area daily with iodine, use bacitracin, and top it off with a gauze. A few days after doing this, the incision was fully closed again.
After this, I haven’t experienced another flare, yet I am very aware of what I can do when I do. I try to remember that even though it also took a toll on my mental health, I was always able to get back up again one way or another. I am now two months away from graduating.
AAD Clinical Overview: Hidradenitis Suppurativa (HS)
Definition
Also called acne inversa, HS can look like pimples and acne cysts. It’s not acne, though. Still, when HS first appears, some people think that they have pimples in their armpit, on their inner thighs, or in their groin area.
Without treatment for HS, this skin condition can worsen. Abscesses, which are pockets of pus, can develop. When an abscess breaks open, blood and pus leak out. As the abscess heals, a scar usually develops.
You may develop more abscesses in the same area. If the abscesses and scars continue to appear, tunnels can form under the skin. These pus-filled tunnels are called sinus tracts.
Getting medical treatment from a dermatologist before HS worsens can reduce flare-ups and prevent HS from becoming a painful disease that might cause disability.
Because you may not have heard of HS and HS can look like acne, boils, and sores, it can be difficult to know what to do. In fact, when seeing a dermatologist for the first time, many patients describe the reason for their visit as having one or more of the following:
- Armpit pimples or sores
- A lump or cyst in their underarm
- Pimples, cysts, lumps, or boils on their thigh
- Cysts on their groin
Symptoms
If you have this skin disease, you may notice breakouts on your skin that look like pimples or boils. Often, these breakouts clear for a while. Later, you may see new breakouts develop in the same area. Sometimes, the breakouts develop in exactly the same spot.
Living with untreated HS can affect your life in different ways. Some people develop one or more of the following:
- Anxiety: If you don’t know what’s happening to your skin and why you keep getting these lumps, you may feel anxious.
- Depression: Medical studies have found that people who have HS tend to develop depression more often than people who do not have HS.
- Infections: A bacterial infection can develop in skin with HS.
- Itch: HS on the groin, armpits, or thighs tends to be itchiest.
- Pain: The deep lumps and tunnels that develop beneath the skin can be painful. Some people need prescription-strength painkillers to help manage the pain.
- Scars that restrict movement: As the body produces more and more scar tissue, the scars can thicken. Some scars become so thick that they limit how far you can move.
- Skin cancer: Some people with HS have an increased risk of developing a type of skin cancer called squamous cell carcinoma (SCC). This skin cancer tends to develop where you’ve had HS for years. Men who’ve had HS on their genitals or around their anus for many years are most likely to get SCC.
Typical Presentation
HS tends to begin in an area with thick, coarse hair like the armpits and groin. As the disease progresses, some people may see HS under their breasts. HS can also develop in less common locations like near an ear or around the belly button. A few people have developed HS on their face, neck, or back, but this is rare.
Text from the American Academy of Dermatology (AAD).
Source: https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-overview
More HS Patient Stories
My HS journey began when I was around 13 years old, but it took 16 years before I finally received a diagnosis at the age of 29. During those years, I lived with painful flare-ups, recurring abscesses, drainage, and scarring without understanding what was happening to my body. Like many people living with HS, I was repeatedly told they were just “boils” or infections, and I learned to suffer in silence.
For years, I sought medical care, hoping someone would connect the dots. One of the most difficult experiences was with my gynecologist. I was repeatedly prescribed antibiotics for what were believed to be isolated infections, but the underlying disease was never recognized. My symptoms were often minimized, and I left appointments feeling unheard and frustrated. Looking back, I realize that this experience reflects a larger issue—the lack of awareness and education about hidradenitis suppurativa, even among healthcare professionals.
Ironically, it was my boyfriend, Héctor, who first recognized that what I was experiencing could be hidradenitis suppurativa. He encouraged me to see a dermatologist, and that conversation ultimately changed my life. Receiving a diagnosis was emotional it was devastating to learn I had a chronic inflammatory disease, but it was also an incredible relief to finally have answers after so many years.
Since my diagnosis, my treatment journey has included hormonal therapy with oral contraceptives, nearly two years of Humira (adalimumab), and multiple surgical procedures. The oral contraceptives helped address the hormonal component of my disease, while Humira gave me the best disease control I had ever experienced, significantly reducing my flare-ups and improving my quality of life. That experience showed me just how transformative the right treatment can be when HS is properly recognized and managed.
I’ve also undergone multiple procedures, including Nd:YAG laser treatments, deroofing surgery for persistent lesions, and CO₂ laser wide excision surgery on both groins. Each procedure came with its own physical and emotional challenges, but each one also represented another step toward reclaiming my quality of life.
My journey hasn’t been limited to HS alone. I also developed recurrent pilonidal disease, requiring several incision and drainage procedures before ultimately undergoing a Limberg flap reconstruction. Recovering from that surgery was physically demanding, but it reinforced something I’ve learned throughout this journey: healing isn’t always linear, and living with chronic inflammatory diseases requires resilience, patience, and hope.
HS has affected nearly every aspect of my life from my confidence and relationships to my career and everyday activities. There were times when sitting, walking, exercising, or simply getting dressed became painful. Beyond the physical symptoms, the emotional burden of living with an invisible disease has been immense.
As an anesthetist, it’s especially meaningful to me that even with a medical background, it still took 16 years to receive the correct diagnosis. My experience highlighted how easily HS can be overlooked and how essential it is to improve education across all medical specialties, not just dermatology.
Today, I have transformed my experience into purpose. I dedicate my time to advocating for people living with HS, particularly within the Hispanic community, where awareness, education, and access to care remain limited. My mission is to reduce stigma, promote earlier diagnosis, empower patients to advocate for themselves, and help healthcare professionals better understand the realities of living with this disease.
HS will always be part of my story, but it no longer defines who I am. Instead, it has become the reason I use my voice to create hope, build community, and work toward a future where no one has to wait 16 years to hear the words, “We know what you have, and we know how to help.”
J.U.O., 33 years old, female
Future HS stories will appear here
Future HS stories will appear here