On average, people have HS about eight years before they are given the correct diagnosis, says DeNiro. “This includes people who are staying home and suffering in silence or have seen a provider but haven’t been correctly diagnosed yet,” she notes.
Diagnosis can be delayed for a few reasons, says Pichardo. “It can be hard to spot at first, depending on the location in the body. Some patients are embarrassed about it and reluctant to talk to anybody — their friends or family or even a healthcare professional,” she says.
Some patients and medical providers may think the HS is something else, like an ingrown hair, folliculitis, or an acne-type rash, says Pichardo. “It’s important to seek treatment early and for physicians to recognize this condition to minimize the chances of scarring and other complications,” she adds.
The first way HS is diagnosed is through the type of lesions, which are inflammatory pustules, boils, or abscesses under the skin, Pichardo says. “They are bilateral, which means on both sides of the body.”
The pustules are commonly found in certain areas of the body, although those areas are different for women and men, says Pichardo. “Usually for women these can appear under the arms, under the breasts, in the groin and pubic area, and in the inner thighs. In men, it’s mainly in the underarms, groin, and anal area.”
The most common way to assess the severity of HS is called the Hurley staging method:
Hurley Stage 1: Less Severe Disease There are isolated nodules, bumps, or abscesses with minimal or no scarring.
Hurley Stage 2 : Moderate Disease At this stage, there are widely separated nodules or abscesses that are connected to each other in what are called sinus tracts, which are like channels under the skin that connect one lesion with another and cause scarring, says Pichardo. There can be some scarring within a region of the body in this stage.
Hurley Stage 3: Severe Disease There are multiple or extensive sinus tracts, abscesses, and scarring affecting a whole area of the body at this stage.
