Hidradenitis Suppurativa: Getting a Diagnosis
Being a teenage girl can be pretty emotional. Your body changes, your hormones change, and a lot of things can feel like the end of the world. My teen years were especially traumatic, because with my hormonal changes, I experienced the onset of hidradenitis suppurativa (HS), but I had no idea that’s what it was. In fact, I didn’t know what it was until just last year, nearly 30 years after my first flare.
HS, also called acne inversa, is a skin condition characterized by recurrent painful abscesses and lesions under the armpits, on the thighs, groin, breasts and really anywhere with a lot of sweat glands.
When I first started getting flares they were on my thighs, and I can remember walking down the halls of my high school with blood dripping down my leg from a ruptured abscess. Back then, I thought it was just because I was overweight and my thighs were rubbing together; that there was something wrong with me, and it was my fault.
I was ashamed, and I didn’t want to tell anybody.
When I started getting boil-like flares in my groin area, I did tell my mom, but didn’t tell her about what was going on with my thighs because I didn’t think it could be connected. The HS manifested differently on different areas of my body. My mother, and grandmother who was a nurse, thought I just had boils.
When I started to get abscesses on my breasts and buttocks in my 20s, I saw a general practitioner, who mistakenly diagnosed me with contact dermatitis—essentially an allergic reaction.
But the problems persisted. I basically had acne inversa everywhere people typically get it: my thighs, groin, buttocks, breasts, under my armpits—I even would get abscesses on my sides between my breasts and hips.
Still, I never connected the dots. At the time, I was seeing a dermatologist for cystic acne and once before an appointment, I broke out with 12 flares up and down my sides. When I finally worked up the courage to show the dermatologist the lesions, he knew immediately it was acne inversa and started me on treatment.
I was already taking an antiandrogen for my cystic acne, which blocks the androgen (or male sex hormone) receptors and is often used to treat severe acne, HS and other conditions. My dermatologist increased the dosage of my antiandrogen and prescribed a daily antibiotic to help reduce the risk of infection. When an active HS lesion ruptures, you are prone to infections, and some can be potentially fatal, like cellulitis. For that reason, when I start to get a flare, I’m supposed to preemptively increase my dosage of antiandrogens and start a new regimen of even stronger antibiotics.
Antiandrogens and antibiotics have worked well to reduce the severity of my flares. I do not consider them a cure, but just another way to control the effects of HS as best I can. In addition to the prescribed medications, I try to manage the pain of flares by using a hot compress on the affected areas and wearing loose-fitting clothing. I’ve even had to wear maxi pads in my bra to prevent the bra’s hard rim from rubbing against or pressing into a flare, because even without anything touching the flare, the pain is excruciating.
My best advice for someone newly diagnosed with HS, or someone who is experiencing lesions or symptoms of HS, is to not live in shame. Believe me, I know it’s easier said than done—I waited 30 years to get a proper diagnosis. But the more we talk about it, the more people will learn about it. There is science out there about HS, and specialists trained to treat it. Educate yourself on the co-occurring conditions. Personally, I’ve also been diagnosed with arthritis and fibromyalgia related to my HS. Most importantly, if you are suffering from this condition, just know you are not alone.
Fawn Griswold, 39, lives in Pennsylvania. She was just diagnosed with hidradenitis suppurativa one year ago, but has been living with the condition for nearly 30 years.