One of the most frustrating things about HS is that many healthcare professionals don’t understand this condition or recognize it when they see it. HS can also look like other conditions and show up differently from person to person. Keep reading to learn about the different symptoms to look for.

Hidradenitis Suppurativa (HS) Is More Common Than You Think!

Hidradenitis suppurativa affects an estimated 1 – 4 out of every 100 people worldwide. That’s a lot of people! And for reasons we don’t fully understand, the incidence has increased over the past decade. Females are affected 3 – 5 times as often as males, and people of African descent are affected more often than other racial groups. Most people with HS start noticing symptoms between the ages of 13 – 24 years. 

What are the Most Common Hidradenitis Suppurativa (HS) Symptoms?

Most people with hidradenitis suppurativa notice their first symptoms when they’re between 13 – 24 years old, although it’s not uncommon for people to get their first bumps in their 30’s. If a person develops the condition before his or her 13th birthday, it is considered early-onset. With early-onset HS, the child is more likely to have lesions in multiple body areas and to have hormonal imbalances. HS that starts before puberty is more common in kids with a family history of HS.

The earliest symptoms are usually pain, itching, burning, skin redness and increased sweating in the affected area. Later, the first lesions appear as small painful bumps that sometimes contain pus (a creamy yellow-to-white discharge) or blood. The bumps eventually turn into deep, inflamed nodules.

Over weeks or months, the nodules become progressively swollen. Eventually, they may rupture and release bad-smelling pus and bloody fluid. This release is called “suppuration.” The process happens over and over, and it can eventually lead to severe scarring that can get in the way of moving the arms or legs. In the late stages of HS, a person may have severe headaches, cramps and joint pain.

The hallmark of HS is that it is chronic; people with HS have a lot of recurrent flares and the cycle starts all over again. Most people notice symptoms a few days before a new flare: fatigue, feeling feverish or unwell, headache, nausea, skin redness, tingling and itching. A lot of people find that heat, sweating, stress, and their menstrual cycle can make their symptoms worse.

The number of nodules that a person gets depends on the individual. For example, some people with HS only get 1 painful lump per year, while others get up to 30 per month. The average is 2 lesions per month that last about a week before rupturing. However, the bumps do not always burst. They can stay hidden deep beneath the skin and stay there for a long time, even years.

Fatigue is an important symptom of HS that can be related to anemia. Anemia is common with HS because the inflammation combined with blood loss from wounds can lower your body’s iron and red blood cells. It’s important to have your doctor test you for anemia if you have HS and feel very weak or tired – especially if you are considering surgery.