After explaining what Hidradenitis Suppurativa is and how I have approached managing it , while recognizing that HS has no definitive cure, let's look at its symptoms and stages. I am not a doctor, and this article shares personal experience and general information, not medical advice.
HS Symptoms: Follicular Occlusion Syndrome
First, people living with acne inversa may also experience other disorders within the FOLLICULAR OCCLUSION SYNDROME spectrum (FOS).
If you have HS in typical areas such as the armpits, pubic area, groin, and buttocks, you may also experience skin concerns elsewhere on your body.
You may have, or have had, acne on your face or back, as I have, along with ingrown nasal hairs, spots on your scalp, or similar problems.
Follicular occlusion syndrome includes a group of four conditions involving blocked hair follicles. Keratin can build up inside a follicle, causing it to swell and rupture, which triggers inflammation and can lead to pus collecting in the surrounding tissue.
The conditions in this group are:
- Hidradenitis Suppurativa
- acne conglobata
- dissecting cellulitis of the scalp
- pilonidal disease around the tailbone.
Doctors have long recognized that these conditions can coexist, share certain features, and can all be difficult to manage. Research continues to clarify the reasons behind these connections.
Current evidence describes HS as a chronic inflammatory, often autoinflammatory condition centered on hair follicle occlusion and rupture, rather than a classic autoimmune disease. The other conditions in the follicular occlusion group also involve hair follicles, but they remain distinct diagnoses.
The Hurley Stages
To better understand how Hidradenitis Suppurativa is assessed and managed, it also helps to know its stages of severity.
There are three main stages, known as the Hurley stages
- Stage I: one or more abscesses without tunnels or scarring
- Stage II: one or more recurrent abscesses with tunnels and scarring, with single or multiple widely separated lesions
- Stage III: widespread involvement of an affected area, with multiple interconnected tunnels and abscesses
For people without a medical background, the Hurley staging system can include unfamiliar terms and descriptions that may feel vague. This can make it difficult to understand which stage applies and what that stage means.
It does not tell you which treatments to follow because it is a classification tool, not a treatment plan.
The boundaries between HS stages can feel blurred, especially because different areas can be affected differently. For example, you might have stage I HS in an armpit and stage II or even stage III HS around the groin or pubic area.
One thing is certain: no stage is "better" than another for the person living through it, and all of us can understand the frustration this condition brings.
Because HS tends to involve the hair follicles, some people with mild to moderate disease may find laser hair reduction helpful. Results and suitability vary, so this is something to discuss with a dermatologist. I will cover this therapy in a separate article.
In stage III, tunnels, abscesses, and scarring can involve much of an affected area. The groin and armpits are common HS sites, and areas of unaffected skin may become limited as lesions and tunnels repeatedly develop.
Will My HS Get Worse?
Many people worry that Hidradenitis Suppurativa progresses like cancer, perhaps because the Hurley system uses the word "stages."
With acne inversa, there is no guaranteed pattern of steady progression.
Some people already have stage III disease when they first receive specialist care, while others remain at stage I or progress to stage II without ever reaching stage III. Disease activity can improve or worsen over time, although established tunnels and scars may remain even when inflammation settles.
Likewise, seeing a doctor for the first time and being classified as stage III does not mean you ignored the problem for too long.
If your doctor says you have a specific HS stage, it is a way to describe the severity and structural changes in that area at that time. It is not a certain prediction of your future. In my own experience, diet and lifestyle changes have been useful parts of symptom management, but they are not a cure and cannot determine the course of HS for everyone. A dermatologist can help you build an individualized care plan.
In the next article, I will explain the Hurley stages in more detail, using practical examples and images from real cases.
Reader comments (0)