What is Hidradenitis Suppurativa? This article shares my personal experience and general information, not medical advice. I am not a doctor, and HS has no definitive cure.
This is the question we should ask before exploring the approach described in the previous post.
Hidradenitis Suppurativa: a scientific definition
Hidradenitis Suppurativa, also known as Verneuil's disease or acne inversa, is a debilitating chronic disease that mainly affects skin folds in the underarms, perineum, and under the breasts. It can cause swollen, painful lumps similar to skin abscesses. These lesions are often sterile. In chronic cases, pain, a fluid-filled sensation, drainage, and the formation of tunnels are common. A secondary bacterial infection can sometimes develop in deep abscesses and tunnels. In chronic underarm disease, inflamed nodules may merge and form palpable, cord-like fibrous bands. The condition can become disabling because of pain, drainage, and odor.
The exact mechanisms behind this inflammatory disease are still not fully understood.
At least, that is the kind of clinical information you will find on many medical education websites. But what does it actually mean to live with Hidradenitis Suppurativa?
What does it mean to live with HS?
Hidradenitis Suppurativa can be physically, psychologically, and socially disabling. It develops in some of the body's most sensitive areas, often called the "inverse areas": places where skin touches skin, such as the underarms, beneath the breasts, around the genitals, and in the groin.
The disease can cause incredibly painful "boils," large bumps, pus-filled abscesses, and hard lumps that may take months to heal. Lesions can affect nearby areas and often leave scars behind.
As the disease progresses, these sores may drain pus and produce a very unpleasant odor. This process is called "suppuration." Heat, stress, excess weight, hormonal changes, and heavy sweating may worsen HS symptoms, but none of these factors is the sole underlying cause. Acne inversa is not a self-inflicted disease.
HS is a chronic condition, which means that people living with it experience recurring inflammation. New "abscesses" may begin to form before the previous ones have had time to heal completely.
Because severe flares can affect the genital area, signs of acne inversa are sometimes mistaken for sexually transmitted or contagious infections. Hidradenitis Suppurativa is neither. No one infected us, and we cannot pass HS to anyone else. The areas commonly affected, and the condition's resemblance to a sexually transmitted infection, are part of what can make HS so psychologically and socially debilitating.
What causes Hidradenitis Suppurativa?
The medical community is still investigating exactly what causes Hidradenitis Suppurativa. Diagnosis can be delayed because HS is not always recognized at first. Treatment responses also vary: some options provide only temporary relief for some people, and any treatment can have side effects.
If you find a doctor who can confidently diagnose HS, you may be told that there is no definitive cure. That does not mean there are no treatment options. Depending on your circumstances, a clinician may discuss medication, including antibiotics or biologic therapies, surgery, wound and pain care, or a combination of approaches. A dermatologist with experience in HS can help you weigh the potential benefits and risks.
Awareness remains limited among the public and, unfortunately, HS can still be missed in healthcare settings. Considering that the condition was described for the first time in 1839, you might expect it to be widely recognized by now. Yet many people still face a long and frustrating path to diagnosis. You only need to read my story and the challenges I went through before receiving an accurate diagnosis.
Progress in HS research
For much of the time since HS was first described, progress in understanding and treating the condition was slow. Today, research continues and treatment options have expanded, although HS still has no definitive cure.
One major obstacle was misunderstanding what actually causes it. The mistaken belief that HS was primarily a disease of sweat or apocrine glands was quickly accepted by the medical community, and many people received treatment for presumed apocrine gland infections without benefit.
Later, detailed studies of HS showed that sweat glands are involved secondarily when inflammation becomes intense, rather than being the primary cause of the disease. Surgery that removes affected tissue, which may include sweat glands, can still be considered in selected severe cases, but it is not a universal cure and outcomes vary.
So, what is Hidradenitis Suppurativa? It is primarily a chronic inflammatory disease in which hair follicles become blocked, leading to recurring inflammation in the skin.
Next, we will look at the early symptoms and at the possible role that leaky gut may play in HS, while keeping in mind that this connection has not been established as a cause or treatment.
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