Ask the Advocate: Diagnosis
For so many of our HS warriors, the road to diagnosis is long and involves many misdiagnoses. In fact, on average, it takes people about 7 years to get an accurate diagnosis of hidradenitis suppurativa.1 We asked our advocates about their diagnosis experiences to gain insight into what is so often a long and winding road.
When did you know that your HS boils and flares were something more than just acne?
Katy: I think I knew right away. The boils happened in unusual places for acne – like my butt and thighs. I just remember my doctors being clueless. They treated it like it was acne, but even then, they did not really know. My parents also fought on my behalf because they did not think it seemed like acne either. It just acted differently. It never went away as acne does. It happened in odd places. It drained more like a boil or cyst than acne did.
When I was diagnosed though, it was so validating to have a name for the problem. That was an ah-ha moment – this was not acne – and my dermatologist knew how to approach it. Even though many of the treatments did not work, I could start telling people what it actually was, instead of avoiding the subject.
Rebecca: I realized that my boils were more than just acne when I was around 17. They just kept getting worse, and sometimes I could barely walk from the boils between my legs. I still didn't have a name for my condition at this stage and was much too embarrassed to tell anyone. I knew it had to be something more, but at this point in my fragile teenage life, I don't think I was prepared to find out, either. I continued ignoring it until I couldn't anymore, and I received my diagnosis of hidradenitis suppurativa at the age of 21.
Were you misdiagnosed? If so, what were you originally diagnosed with?
Selina: I had no idea that my hidradenitis was hidradenitis. I thought they were ingrown hairs, or razors bumps or because I didn't change my razorblades enough. I also had people outside the medical professional world try and tell me that I was unhygienic, or I was getting these outbreaks because I lived with too many people, and such nonsense. When my armpit boil got to be too painful and I could no longer move my arm, I went to a walk-in place because I didn't have a primary care doctor at the time. This place never once mentioned hidradenitis. They said they would test for MRSA and then lanced and drained and packed my armpit – horribly, might I add. They called me a few days later to say that I tested negative for MRSA, but never gave an explanation or anything about what I was actually dealing with.
It took me 4 years to hear the term "hidradenitis suppurativa," and I'm actually grateful for that. I've had people tell me that they went undiagnosed for over 10 years! I've also had people tell me that doctors have misdiagnosed their HS as STDs. It really is so sad that people in the medical world don't even know about hidradenitis. If medical professionals don't know, how are patients supposed to get the proper care they need and deserve?
Rebecca: No, I wasn't misdiagnosed. I kept it to myself for so many years, so when I finally decided to show a dermatologist, she diagnosed me with HS. Although I didn't receive any information about HS, so I was still in denial for many years after I received the official diagnosis. It was only in 2020 that I decided to properly look into this condition and see what I could do to try and better my quality of life.
How many years after you experienced your first flare did you receive your HS diagnosis?
Katy: I was 10 when I experienced my first flare. I was not diagnosed with HS for 7 years. I was a senior in high school when I was diagnosed, and until then I had kept my HS mostly a secret, hoping that no one would notice the scars and draining in my armpits. My friends noticed sometimes, but, as I did not have a word for it, I mostly blew them off. When I was 17, my mom approached me about the blood and stains she kept finding in my clothes. She and my dad knew that I had been getting these boils since I was 10, but not how frequent they were. She suggested we go see a new dermatologist. The one I had been to before did not know what HS was and did not diagnose me. Until then, he was the only dermatologist in the town I grew up in. The dermatologist my mom wanted me to see was new and she had heard good things.
The dermatologist knew what it was right away. We described it to her, and she said, "Oh it’s hidradenitis suppurativa." She knew before she even looked at my body. My mom and I were shocked. We had been expecting to have to go on a long journey of tests and questions, but the dermatologist immediately knew what it was. It was a HUGE relief. She immediately started me on oral and topical antibiotics and felt like an ally in this strange world. It’s important to mention that my mom made an appointment with my dermatologist and we were able to get in. Some people have to wait a long time for a referral from their primary care physician and even longer to get to see a specialist, and it just delays a diagnosis. Because of my mom’s insurance (and persistence), I was able to get a diagnosis sooner than a lot of people.
Tia: I was officially diagnosed with HS 6 or 7 years after my first flare-up. In July of 2017, flare-ups appeared in both armpits, and I felt miserable. After a while, I decided enough was enough. In a few weeks, I was going to a music festival out of town, so I didn't want a flare-up to prevent me from enjoying the event. Therefore, I called my primary care physician and scheduled an appointment. After my examination, she informed me that I have hidradenitis suppurativa. I looked at my doctor and thought, "Hydra?" My doctor prescribed an antibiotic to reduce infection and inflammation. She also recommended that I see a dermatologist. I was shocked and terrified, as I had never heard of such a disease. I couldn't believe I had lived with HS for so long.
During my first visit to the dermatologist, I was diagnosed with hidradenitis suppurativa. After swabbing my boils to rule out staph infections, my dermatologist recommended another appointment to discuss my condition. Although my doctor and dermatologist confirmed that I had hidradenitis suppurativa, I still did not know what caused it. I was completely overwhelmed by the amount of information available when I first started researching HS. It made me wonder if this disease was in my family, if I brought it on myself, how I would cope with it, and how my life would be affected by it. I had studied biology in college, and I knew medical terminology from my years as a medical transcriptionist, but the information was all jumbled together.
Rebecca: I received my first boil at 13 years old, and I didn't receive a diagnosis until I was 21! I was actually accidentally diagnosed with HS! I had quite bad cystic acne at the time, and I went to a dermatologist, who prescribed me Accutane for it. My boils in my groin/inner thigh area were getting worse and worse, so I decided to be brave and ask the dermatologist if that would cure the acne between my thighs too, and she looked confused and asked to see. I reluctantly showed her, and she said, "That's not acne. That's hidradenitis suppurativa." And I was sent on my way with no information about the diagnosis I had just received. I have done my own research after that.
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What's in your self-care toolkit? (Choose all that apply)