What is hidradenitis suppurativa?
Hidradenitis suppurativa (HS) is a chronic (long term) skin disease with recurrent painful, red lumps that look like “boils”. These appear suddenly, increase in size rapidly, and then break under the skin, or drain to the surface, forming painful cysts, sinuses, blackheads, and scars. It affects the hair follicles in the hot, moist, sweat gland-bearing areas under the arms, breasts, groin, and buttocks. HS is sometimes referred to as “inverse acne” because it can look like severe cystic acne usually seen on the face, chest and back in teenagers. This condition is not rare. It affects up to 1 in 300 people. It is more common in women than in men.
What happens in this disease?
HS starts around puberty and may disappear between 50 to 60 years old. Although more common in women than men, it is more severe in men. In women, it often flares before the monthly period. Most patients have the mildest form of HS (70% of HS patients). Patients with mild disease have a few painful spots for a few weeks, followed by periods of weeks or months with no problems. They do not go on to have severe HS. About 25% of patients have moderate HS, with repeated painful red “boil” like spots in one or more areas. These spots can break and drain and reform. Scars can develop. Patients with the most severe HS (4% of HS patients) have outbreaks of painful spots continuously. They develop large areas of constantly painful, swollen, draining areas with scarring. Their day-to-day activities may be limited due to the pain.
What does it look like?
First there are red, swollen, bumps that develop into “boils”. The “boils” can be single or multiple, scattered in an area or grouped together. Single boils usually heal with pitted scars. Grouped boils may form a large swollen area that is connected by small tunnels under the skin, called sinuses. If you press on any of these areas, you can probably find pus coming out of openings nearby. This drainage can be light or heavy, and can often be smelly. In severe disease, large areas of sinuses and scarring are seen. Some patients have 1-2 areas involved, while others will have more areas. Blackheads may be seen.
Where is it usually seen?
It is most commonly seen in the axillae (armpits), under and around the breasts, in the creases of the groin, the area around the anus, and on the buttocks. The pattern of involvement varies from patient to patient. In women, it is commonly found under the arms, breasts, and in the groin. In men, it is more commonly seen in the skin around the anus and on the buttocks.
What is the cause?
This condition is caused by an inherited tendency for blockage of the ducts leading to the skin pores. The hair follicles and sebaceous (grease) glands drain their content through “ducts” to tiny openings on the skin surface, called “pores”. When the ducts are blocked, sweat and grease and bacteria build up to form painful “cysts” & tunnels beneath the skin surface. The oil ducts and hair follicles eventually explode sideways underneath the skin, causing irritation and inflammation that eventually lead to scarring.
What does NOT cause hidradenitis suppurativa?
It is not caused by infection or washing habits. It is not caused by being overweight, although this may make the condition worse because of increased friction between skin & rubbing from clothing.
What makes this condition worse?
It can be worsened by hormonal influences, such as around the menstrual cycles. Perspiration & friction are also major problems. The skin follicles in the sweaty areas of the body seem to be “weak” and will rupture easily. Persistent rubbing by tight clothing, menstrual pads, or opposing skin can cause the plugged and swollen ducts to break down more easily. Squeezing the “boils” or “cysts” will often make things worse. Smoking or stress could also make HS worse.
How is it diagnosed?
The diagnosis is made by recognizing the typical skin changes in the typical locations. The pattern of recurrent “boils” in these particular areas, especially when they do not respond to standard antibiotics, is a good clue. Unlike normal “boils”, which are usually caused by bacteria and respond quite well to antibiotics, & usually do not recur in areas after treatment, HS are not caused by bacteria, do not respond as well to antibiotics, & typically recur after treatment. Furthermore, unlike normal boils, which “point” and discharge straight up to the surface, HS make sideways tunnels under the skin.
Why is this problem overlooked or missed?
Most medical caregivers get little to no education on this subject. Patients often suffer in silence due to embarrassment or previous misdiagnosis and treatment difficulties. This is not an easy condition to manage, so failures are frequent and patients (and some physicians) sometimes give up.
How is hidradenitis suppurativa treated?
Treatment depends on severity. Treatment may involve medications used on the skin or taken orally. Surgery may be necessary in later stages.
To decide the best treatment for you, it is important to know how severe your problem is. This is done with a grading system that is referred to as Hurley’s Criteria:
Hurley’s Stage I – these are abscesses (“boils”); they do not have tunnels (sinuses) under the skin; scarring is fairly minor.
Hurley’s Stage II – these are abscesses (“boils”) with tunnels (sinuses) under the skin and scarring. There may be one or more of these clusters scattered in different areas; however, these clusters are separate from each other.
Hurley’s Stage III – these are large areas of abscesses (“boil”) with interconnected tunnels and tracks, with lots of drainage and scarring.
- Avoid rubbing, pinching, or squeezing in the areas where you have recurrent spots. These skin pores are weak and break easily, causing more swelling and pain. Avoid underwear with seams that rub. Wear clothing such as boxer shorts that is loose and cool so that you are not overheated or sweaty.
- If overweight, try to get down to ideal weight.
- Stop smoking as well as the use of any nicotine product. Nicotine stimulates plugging of the pores. Toxins in smoke could interfere with proper healing.
- For women, it is helpful to reduce the influence of the male hormone. This can be done using certain birth control pills or medications.
- Antiseptic washes can help with odor and drainage.
- Antibiotics can help to decrease inflammation. They can be used for periods of weeks or months. They can be given:
- By direct application to the skin (topical)
- By mouth (systemic)
- Zinc gluconate can be given orally for its anti-inflammatory effect.
- Surgical treatment is important:
- If there are spots that keep recurring or breaking down, they are usually due to foreign material trapped under the skin, in cysts or tunnels, referred to as sinuses. They have to be surgically opened. These areas will heal over in 2-3 weeks.
- For the most severe Hurley’s stage III disease, the treatment is mostly surgical & requires the help of a knowledgeable surgical team. Before surgery, the patient may need to be on medication to help control redness and swelling.
For more information:
International Society for the Study of Vulvovaginal Disease
Patient Information Committee