Because many health care professionals are not well-informed about hidradenitis suppurativa, there is often a long delay in getting diagnosed. Also, the lesions of HS are easily mistaken for simple infections, ingrown hairs or pimples at first. We’ve heard from many HS sufferers who spent years of their life looking for answers before finally getting a diagnosis.
The diagnosis is based on the appearance of your skin lesions and important clues from your medical history. The doctor may ask you if you smoke, how long the bumps have been there, and if anyone else in your family has the same issue.
There are no specific lab tests to diagnose hidradenitis suppurativa, but there are some common findings that might show up on your blood tests:
- an elevated white blood cell count
- high c-reactive protein
- high serum IgE
- high complement C5a
- an elevated erythrocyte sedimentation rate (ESR)
- elevated blood sugar and insulin
- signs of anemia, including low iron, low ferritin, or problems with your red blood cells
HS can look like a lot of other conditions. If you think you might have hidradenitis suppurativa, it is important to get checked out by a licensed healthcare practitioner such as a dermatologist so that you can rule out other conditions including:
- squamous cell cancer
- breast cancer
- lymphogranuloma inguinale
- vegetating pyoderma
- epidermoid or dermoid cyst
- carbuncles and furuncles
- Crohn’s disease
How is HS Staged or Classified?
A classification system called the Hurley Staging System is the most widely-accepted way of rating how severe a person’s HS is. There are 3 Hurley Stages:
- Stage I: This is the mildest stage. A person in stage I may have a single boil or multiple bumps, with or without tunneling and scarring. They may also have abscesses (deep pockets of pus and bacteria). At this stage, HS can easily be mistaken for regular pimples, herpes, or sebaceous cysts.
- Stage II: This is the intermediate stage. People in stage II have multiple lesions and recurring abscesses with tunneling and scarring.
- Stage III: This is the most severe stage. It involves widespread areas or multiple interconnected tunnels and abscesses across an entire area of the body.
It’s estimated that about 75% of HS patients are in stage I, about 24% are in stage II, and about 1% are in stage III. However, keep in mind that not everyone will move past stage I, and not everyone will continue to get worse. Many people live with stage I that never becomes very severe.
The Hurley Staging System isn’t perfect, however. It doesn’t take into account how severe the inflammation is, or the number of body sites that are affected. Many researchers are recommending and proposing new classification and scoring measures that take these factors into account.