It started small a boil in the groin that quickly grew large enough to make walking or sitting unbearable during a six-and-a-half-hour road trip. There was no comfortable position. Standing. Lying face down across a row of seats. Anything to get through the miles.
At an urgent care stop, a doctor noted the wound ran several inches deep before draining it. The table, the floor, the surrounding area all of it saturated in blood. Towels, washcloths and mesh underwear were brought in. Back at the hotel that night, puppy pads and personal blankets were laid down to protect the bedding from continued drainage.
That is what a bad flare-up of hidradenitis suppurativa looks like. And for many people, it is simply a Tuesday.
What exactly is hidradenitis suppurativa?
Hidradenitis suppurativa commonly called HS is a chronic inflammatory condition involving the apocrine sweat glands and hair follicles. When those follicles become blocked, the result is tenderness, boils, draining abscesses and sinus tracts beneath the skin, according to board-certified dermatologist Adeline Kikam, D.O. Known risk factors include smoking, obesity and a family history of the condition, though the precise cause remains unknown.
Flare ups tend to occur in areas dense with hair follicles and sweat glands: the armpits, groin, buttocks and under the breasts. Some people also develop abscesses on the face, neck, abdomen or behind the ears.
It disproportionately affects Black people
HS develops in Black people at a rate three times higher than in other ethnic groups, making it a condition with a clear racial disparity that remains underaddressed in both research and clinical settings.
It takes an average of 10 years to diagnose
One of the most painful realities of living with HS has nothing to do with the physical symptoms. According to data from Cosentyx, the average patient waits a full decade before receiving a correct diagnosis. Dermatologist Jeaneen A. Chappell, M.D., founder of Chappell Dermatology in Dallas, Texas, says that in her experience, delayed diagnosis most often stems from a lack of access to dermatological care or from the condition being repeatedly misidentified as recurrent bacterial infections or boils.
Joy Wilkerson, a mother who was diagnosed in 2016 following the birth of her son, initially assumed a painful cyst in her groin was the result of an ingrown hair. It was only when the cysts began recurring that she pursued further medical attention a pattern Chappell confirms is a telling sign that something more complex may be happening.
Basic tasks become painful during a flare up
Wilkerson describes the toll that active flare-ups take on daily functioning: wearing a supportive bra, washing dishes or moving through a normal day can all become sources of genuine pain. Months before the road trip incident described above, a boil ruptured at an airport in Vermont, requiring a limping walk through terminals in search of a first-aid kit and bathroom stops every 30 minutes to clean and change gauze due to heavy drainage.
It quietly reshapes how you dress
Both clothing choices and body image are affected in lasting ways. Wilkerson, who primarily experiences HS in her armpit, says she limits herself to tops that conceal her underarms and avoids raising her arms when wearing tank tops or swimwear. Permanent scarring and discoloration are common long term effects. For people who travel frequently, moisture-wicking and odor-controlling fabrics become near essential. Prints and darker colors serve a practical purpose concealing any unexpected leakage from an abscess.
Triggers are unpredictable and deeply personal
The list of potential HS triggers ranges widely: dietary choices like tomatoes or alcohol, stress, friction from clothing all can contribute to a flare up. Managing them often requires elimination dieting and careful observation over time.
It affects your entire home routine
The condition reaches into nearly every corner of daily life the soap, body wash, perfume, laundry detergent, and even bedding all become variables to manage carefully.
Being prepared can make a meaningful difference
Many people with HS have found that building a portable go kit stocked with skin salve, antiseptic wipes, antibacterial cream, gauze, bandages and wound wash offers a meaningful sense of control. Having it on hand whether leaving home for a few hours or a few weeks can reduce the impact of an unexpected rupture.
There is no cure, but treatment options are expanding
HS currently has no cure. Treatment options range from antibiotics, steroid injections and topical creams to surgical intervention in more severe cases. Research into new therapies continues to progress, and dermatologists encourage anyone experiencing recurring boils or abscesses in the areas commonly associated with HS to seek care rather than wait because with this condition, the sooner a diagnosis is made, the sooner management can begin.
