It Took Doctors Over a Year to Properly Diagnose This Man’s \”Boils\”

ON AN OTHERWISE unremarkable day in 2007, Joe Torre of Bridgeport, CT, noticed what he calls “one angry boil” on his lower back. Only 18 at the time, he didn’t think much of it, telling himself, “I can tough it out,” since initially, it wasn’t horribly painful. He washed down a couple of over-the-counter pain relievers with a large cup of coffee to get him through his 10-hour shift as a cashier at a local restaurant.

That night, he was in agony from the boil, which was the size of a half-dollar coin. His mother suggested laying a warm compress over his lower back to try to bring it to a head. “Two hours later, my mother began to drain the boil of a foul-smelling discharge,” says Torre. “I couldn’t believe that this stench was coming out of me. I thought, ‘How is this possible? I shower two times a day.’ I felt like it had to be my fault somehow and I had done this to myself.”

Torre was entirely unaware that he was about to embark on what would be a year-long medical merry-go-round of misdiagnosis.

Pursuing a diagnosis

At the time, Torre weighed over 350 pounds and lived on a diet of processed foods. His weekend alcohol consumption and pack-a-day cigarette habit added to this recipe for disaster. “To say the least, I was a walking ticking time bomb,” he says. “And I was unaware of the fact that my extremely poor lifestyle choices were just making my unknown illness worse.”

It took every ounce of energy to lift up my arm, only to find out another boil had arrived.

Torre initially sought answers at an urgent care clinic where the health provider prescribed oral antibiotics and reassured him that this was just a one-time boil. “Two weeks later, I had finished all of my meds and the first boil was gone,” says Torre. “But then I started to feel symptoms again, this time in my left underarm.” Once again, his anxiety was going haywire as he thought, “Oh no, not another one.” “I rushed to the bathroom to see if my speculations were true,” recalls Torre. “It took every ounce of energy to lift up my arm, only to find another boil had arrived. And this guy seemed even angrier than his buddy that I had a few weeks ago.”

Torre saw the same doctor and explained that he had another boil, but this time in a different area. “The doctor told me this was normal and that they were simply the result of ingrown hairs that I would likely continue to get,” remembers Torre. For a year, that was Torre’s life: he’d develop a painful boil—usually in the groin, butt, or inner thigh—refill his prescription for antibiotics, which would deliver a temporary fix until the next breakout appeared. Round and round he went until, finally, he made an appointment with a dermatologist.

A little-known skin condition

In the examining room, the dermatologist took one look at Torre and knew immediately what he had. “These aren’t boils,” the doctor told him. “You have a chronic disease called hidradenitis suppurativa.”

Hidradenitis suppurativa (HS) is a chronic skin disease that causes deep, painful lumps under the skin, usually in the armpits, the groin, lower abdomen, and/or butt. The lumps are formed because of blockages of the hair follicles, and the blocked hair follicles trap bacteria, which leads to inflammation. In a worst-case scenario, they can rupture. The lumps are often mistaken for pimples or acne cysts (if not boils), infected hair follicles (folliculitis), or a sexually transmitted disease. As a result, people with HS can go years without getting the help they need, just like Torre. (Treatments often include things like lifestyle changes, biologic injections, steroids, antibiotics, pain relievers, and/or surgery.)

According to a new survey of people with HS, eight in 10 respondents saw more than one healthcare provider before being diagnosed with HS. Ten percent saw more than 10 healthcare providers before being diagnosed. Without the right diagnosis and individualized treatment, HS can worsen. What starts out as one or two deep, painful, pimple-like lumps can turn into a cluster of cysts, which can break open and leak a foul-smelling liquid.

Being able to put a name to what he’d been living with for a year, Torre immediately felt a cocktail of emotions—fear, curiosity, but also some relief knowing that this condition had a diagnosis. His doctor went on further to explain the disease in a very informative and digestible way. “He told me that while the cause of the blockages is usually unknown, certain things like obesity, consumption of alcohol, tobacco, processed foods, and even genetics can play a role,” says Torre. “So while these factors may not have caused the HS, to begin with, they can have an effect on the condition.”

Torre’s doctor ended the visit by telling Torre that he needed to make some serious lifestyle changes in order to properly manage his condition. “That was probably the greatest worst day of my life, simply because I finally got an answer other than ‘they’re just boils,’ and now I finally knew what the problem was,” says Torre. “But I also knew I had a lot of work to do and a lot of changes to implement into my life.”

Empowering personal changes

“After that day, I realized I had to take matters into my own hands,” remembers Torre. “I knew it wasn’t going to be an easy ride, but I had no choice but to buckle my seatbelt and embrace the journey.” In addition to starting a biologic prescription, he started making changes to his lifestyle. Instead of giving up everything all at once, he slowly cut back on cigarettes, alcohol, junk food. In addition, he forced himself to get up every morning and take at least a 20-minute walk around the neighborhood.

As time went on, making these gradual but beneficial changes, Torre started to see small improvements with his HS; he was experiencing fewer breakouts and those he did have were less severe. By 2016, almost 10 years into his HS journey, his overall health had also improved. Most notably, he was 80 pounds lighter.

It’s been over a few years since I had a flare-up, and hopefully it stays this way.

It worked for Torre. “I’m proud to report that I’m in remission,” says the now 32-year-old. “It’s been over a few years since I had a flare-up, and hopefully it stays this way. But only if I continue to live a healthy lifestyle.”

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