“It’s like giving birth.”
That was the only way to describe the amount of blood that drained from a boil that started out small, but grew rapidly in my groin. It prevented me from walking or sitting comfortably during a 6.5-hour road trip. Instead, I found myself alternating between standing up in the Sprinter van or lying face down across a row of seats like those girls in BBL recovery videos.
Miserable wasn’t the word to describe how I felt.
“I can’t even tell how deep it goes, but it’s a few inches,” said the doctor, who was kind and, thankfully, familiar with what I was experiencing. Once cut open to drain, the table, floor, and my private area were all saturated in blood. The nurse brought in towels, washcloths, and mesh underwear so that I could freshen up as best as possible before being discharged. At my hotel, I had to put down “puppy pads” and lie on my own blankets to catch any excess drainage so that I wouldn’t ruin the bedding.
A few weeks prior, I was more grateful than ever for a flight delay at the airport in Vermont. Another small boil has ruptured in my groin area, and I was limping around the airport trying to find a first aid kit to clean and bandage the area. Every 30 minutes or so, I was locked in a bathroom stall, cleaning and changing the gauze due to heavy drainage.
Last year, a friend of mine replied to an Instagram Story I posted of a beautiful sunset. She raved about how cool my work as a travel writer is and how lucky I am to get to see the world. But what she and no one else knew was that the beautiful sunset photo was taken after being stuck in bed for a few days. Not because I was nursing a hangover or tired from partying until the wee hours of the morning. But because my body was inflamed. I couldn’t walk or stand without being in pain. And I was forcing myself to fight through that discomfort to enjoy the last night of my trip.
What I was experiencing in each of these instances was flare-ups resulting from a condition called Hidradenitis Suppurativa (HS).
What Is Hidradenitis Suppurativa?
Hidradenitis suppurativa, also known as HS, is a chronic inflammatory condition of apocrine sweat glands and hair follicles, with blockage leading to tenderness, boils, draining abscesses and sinus tracts, explains board-certified dermatologist Adeline Kikam, DO. Although there are common risk factors like smoking, obesity, or a family history of HS, the exact cause remains unknown.
“Although the exact cause is not known, we believe it’s an overactive immune response to clogged hair follicles and bacterial colonization leading to severe inflammation resulting in tender abscesses under the skin,” says Kikam.
Flare-ups can happen near hair follicles with sweat glands, usually around the armpits, butt, groin, and breasts. Some people also have abscesses on their faces, in their abdominal folds, on their necks, or behind their ears. Unfortunately, it’s also a condition that not only affects Black people at a rate of three times higher than other ethnicities, but it’s also commonly misdiagnosed.
“In my personal experience, diagnosis is most commonly delayed due to lack of access to a dermatologist or misdiagnosis as recurrent bacterial infections (boils),” shares dermatologist Jeaneen A. Chappell, MD, founder of Chappell Dermatology in Dallas, Texas. According to Cosentyx, it takes an average of ten years for a person to receive an HS diagnosis. Understanding this timeline can motivate individuals to seek medical advice sooner and advocate for proper diagnosis.
The pain and struggles of HS are something Joy Wilkerson can also relate to. The mom was diagnosed in 2016 after the birth of her son. She believed a painful cyst in her groin area was the result of an ingrown hair. Once she began to get recurring cysts, she knew it was time to seek medical attention. Recurring cysts in these regions are tell-tale signs that something may be going on, according to Chappell.
HS Beyond the Pain
Like most health conditions, this one has good days and bad days, which can negatively affect quality of life.
“When there is an active flare-up, it hurts to do basic things like wearing a supportive bra or doing simple chores like washing the dishes,” Wilkerson shares.
And, as you can imagine, a condition with unknown causes and a myriad of triggers ranging from eating tomatoes and drinking wine to stress and friction can impact other things like one’s sex life, mental health, and body image. My skin has changed a lot. I have a lot of permanent scarring and discoloration in some areas. It even affects the clothes I wear. Because I travel a lot, I’ve started buying a lot of moisture-wicking and odor-controlled clothing so that if any drainage or leakage happens, I’m not emitting any pungent smells to people nearby. I lean more towards prints and darker hues so that if an abscess leaks, the pus or blood isn’t visible.
Primarily experiencing HS in her armpit, Wilkerson also has moments of feeling more self-conscious. “I tend only to buy and wear clothing that hides my underarms, and I make sure not to lift my arms too high if I’m wearing a tank top or swimwear.”
I’ve had to change everything from the types of soap, body wash, and perfume I use down to my choice of bedding and laundry detergent. This condition truly affects everything.
There Is Hope
There is no cure for Hidradenitis Suppurativa, only treatment, which can range from antibiotics, steroid injections, and topical creams to surgery in more severe cases. Another form of treatment is learning what the triggers are to help mitigate flare-ups.
As a girl who loves an Old Fashion and a French 75 alongside a charcuterie board, I’ve been managing triggers through elimination dieting to learn what my body can and cannot tolerate. I’m still enjoying all the things I love, just in different ways.
I’m also better prepared these days for when a cyst may rupture unexpectedly. The first thing I pack now if I’m leaving my house, whether it’s for a few hours or a trip, is a “go-kit.” It contains everything I could need to manage a flare-up, such as a skin salve, antiseptic wipes, an antibacterial cream, gauze, bandages, or a wound wash.
Despite how HS impacts your day-to-day life, there is hope. “Science continues to advance treatment options for HS,” says Chappell. “So don’t hesitate to see a dermatologist to discuss your options.”
