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Hidradenitis Suppurativa (HS)
About Hidradenitis Suppurativa (HS)
In this section, you or a loved one can find out more about medical treatments, research studies and practical information about hidradenitis suppurativa (HS). Read on to find answers to some of your questions as well as links to other information. Being informed is an important first step towards becoming an active decision-maker in your care plan.
What Is Hidradenitis Suppurativa?
“Hidradenitis” is a Greek word that means “inflammation of the sweat glands”, and “suppurativa” means “pus-forming” which can be a more severe symptom of the condition.
HS is a chronic, long-term skin disease. It causes swollen, red lumps under the skin (which can be large sometimes) that are often very painful, sore or tender. These lumps sometimes leak pus, which can create an unpleasant-smelling odour. In HS, these lumps tend to grow around the armpit and groin/genital areas, but it is also common for them to grow under the breasts, on the buttocks and/or on the inner thighs.
The soreness, inflammation and pus from HS may resemble “bad” pimples. But HS is not acne; it is an entirely different condition.
What Causes Hidradenitis Suppurativa?
The exact cause of HS is unknown. This disease involves the plugging of the hair follicles where sweat glands are present.
Though the exact causes of HS remain a mystery, it seems specific defects within hair follicles may be responsible for its symptoms. It is not an infectious disease, nor is it a condition related to poor hygiene.
Areas where we have apocrine glands, such as the armpit and groin, are where HS lesions tend to occur. Recent research suggests that the lumps, boils and inflamed skin develop when sweat gets trapped inside the sweat gland tubes that are connected to apocrine glands inside hair follicles.
When sweat becomes trapped, it builds up in the hair follicle, swelling under the skin until it bursts. Sometimes the trapped sweat mixes with bacteria in the hair follicle, and an intensely painful and infected boil is formed. The boil might grow until the skin above and around it becomes very inflamed and painful, and pus leakage may occur. This kind of lesion may burst as well.
Although HS can be seen on the surface of the body, it is actually an inflammatory disease. This means that an irregularity in the person’s immune system is causing the disease and the skin irregularities.
People with HS often worry they might pass the disease on to someone close to them. Rest assured, this cannot happen – HS is not a contagious disease. People with HS can have normal and close contact with others, including sexual intimacy, kissing, touching, sharing meals or breathing the same air, with no danger of HS spreading from one person to another. It is also important to remember that HS has nothing to do with poor hygiene – a common misconception about the disorder.
Though the exact causes of HS remain unknown, there are some risk factors associated with this disease:
Age
- HS can occur at any age but it most commonly begins after adolescence in people in their early 20s
- Risk of developing HS drops off after ages 50 to 55
Gender
- Women are 3 times more likely to develop HS than men
Genetics
- Research shows HS may run in families
- About 1 in 3 people diagnosed with HS have a family member who has it too
Hormones
- Because the condition is more common during the reproductive years, researchers think HS might be connected to sex hormones. No evidence of a direct link between the two has yet been proven, however.
Medical research also shows that smoking and obesity seem to put a person at greater risk of developing HS. However, researchers are still not sure whether it is obesity that can lead to HS, or the reverse.
Some of these risk factors for HS, such as smoking, obesity, hormonal changes and excessive sweating, may actually worsen symptoms in people who already have HS.
What Are the Effects of Hidradenitis Suppurativa?
HS lumps usually appear on the skin where apocrine glands are found in hair follicles, and where the skin is also creased or rubs together.
Everyone is different. One person’s HS symptoms may not be like those of another person who has it. There are, however, signs of the condition most people with HS will have at some point: inflamed (red, sore and swollen) areas of skin that have painful lesions, nodules and boils in them. Depending on how severe HS is, the sores in these areas may hurt (particularly when they are pressed), sometimes making movement more difficult; they may leak pus, be itchy and scarring can also occur.
HS varies from mild to severe. Mild cases of HS can consist of tender small bumps, blackheads or a few boils. In more severe cases a person can have painful, recurring lesions that can burst or leak liquid. An unpleasant smell can accompany these leaking lesions.
Not all cases of HS are progressive (increase in severity over time). However, sometimes HS lesions come back in the same place or nearby many times, becoming more severe as they recur. That is why diagnosing and properly managing HS as early as possible is so important.
Which Body Parts Are Affected?
Hidradenitis suppurativa (HS) commonly occurs around hair follicles where many oil and sweat glands are found, and where skin rubs together, such as:
- around the groin and genitals
- in the armpits
- near the anus
- on the buttocks and inner thighs
- under the breasts
The condition may also involve the nape of the neck, or where the waistbands of trousers and skirts sit, and the inner thighs. HS lesions have been known to occasionally appear on the front or back of the legs, on the sides of the torso, on the back or on the face.
Are there other complications?
Though it affects the skin, hidradenitis suppurativa (HS) is an inflammatory disease, which means people with the condition have irregularities in their immune system. Immune system issues can increase the risk of other inflammatory diseases – consequently there are several conditions associated with HS, including:
- Arthritis
- Crohn’s disease
- Depression
- Malignancy
- Severe acne
Lifestyle Options
For most people, regardless of having hidradenitis suppurativa (HS) or not, exercise, healthy eating and good sleeping habits are recommended. A healthy lifestyle can lead to an enhanced quality of life for most people. Talk to your doctor before making any lifestyle changes.
Your body overheating and sweating a lot can cause hidradenitis suppurativa (HS) flare-ups, so if at all possible try to stay away from hot, humid places.
It is unconfirmed whether hidradenitis suppurativa (HS) is more the cause of excess weight or an effect of it. So far it has conclusively been shown that people with HS are more often overweight compared to the general population. It seems the severity of HS symptoms usually increases in proportion to how overweight a person is, so getting the help and support needed to get to a healthier weight may be even more significant for people with HS.
Though medical research has established a link between hidradenitis suppurativa (HS) and smoking, there is debate as to whether it tends to be smoking that leads to HS, or if it is HS (and associated conditions like depression and a lack of exercise) that makes people more likely to smoke. However, while quitting smoking will not cure your HS, it can definitely improve your overall health. It is also likely to reduce HS flare-ups and decrease their severity.
The following suggestions may help relieve soreness, speed up healing and prevent any already-formed lesions from getting worse or spreading:
- Avoid wearing perfume or perfumed deodorants in the places your skin gets lumpy and sore.
- Stop shaving where you have breakouts, as it can irritate the skin. If you want to remove hair, ask your doctor what you can safely use.
- Make a habit of frequently and gently washing the places you have flare-ups with antibacterial or antiseptic soap or shower gel. This will rid the skin of germs (bacteria). (Note: We all have harmless bacteria living on our skin. This is normal. Having too much bacteria is what we want to avoid – especially with HS.)
- Consider the use of topical antibiotics (applied directly to skin instead of taken orally) if the already formed lesions become infected
Try to wear clothes that will reduce friction against the skin where you have recurrent flare-ups – for example, avoid tight waistbands and form-fitting clothes that rub against your skin. Opt for clothing such as boxer shorts, avoiding underwear or anything else with seams that rub where lesions tend to appear. Also choose clothing that is cooling as well as loose so you do not overheat and sweat as much in those areas.
Stress management methods may be useful because hidradenitis suppurativa (HS) can be more severe during times of increased stress. First identify your stress triggers and then develop relaxation and coping skills that can improve your overall well-being and give you a greater sense of control over your HS and your life.
Complementary Therapy Options
In many cases, treating hidradenitis suppurativa (HS) can be tricky. Many things may not work or offer the extent of relief patients and their healthcare teams hoped they would. Some treatments work well at some times but not as well at others. That is why some people with HS look to complementary and alternative therapies (treatments that fall outside the scope of traditional Western medicine). For some, these less common techniques and preparations may work well for relieving pain, and in clearing or reducing breakouts and preventing new ones. Ask your healthcare professional about alternative therapies – there are many you can try.
- Wet a flannel with very warm water and hold it as a compress over a problem area. This may reduce swelling.
- You can try holding a hot, wet flannel (as hot as you can stand), against boils to encourage their pus to gather together under the skin so that they may come to a head where the skin is thin enough to break and start draining. A boil that is leaking/draining hurts less than a hard abscess full of pus that cannot come out yet.
You and your doctor may consider surgery if medical therapies are not working well enough for you. Long-standing, severe and persistent hidradenitis suppurativa (HS) often requires surgery at some point. The operation is usually performed under general anaesthetic. Which kind of surgery is best for each individual with HS depends on how severe and how widespread the person’s HS lesions are.
There are several surgical options for HS. They include:
- Incision and drainage. Surgical drainage may be an option when the HS boils are in a single small area. During the surgery, the dermatologist/surgeon will drain one or two, or cut them out. This procedure is generally for people with mild HS. Antibiotics are usually prescribed afterwards. This procedure can offer short-term relief, but the HS symptoms may return.
- Laser surgery. This treatment shows promise. Some patients’ lesions clear after several treatments. Lasers effectively clear new and deep HS breakouts. This treatment may be lasting in some people because it destroys the hair follicles that so often become plugged.
- Uncovering the tunnels. This procedure, also known as de-roofing, cuts away the skin and flesh that covers any interconnected tunnels linking separate lesions. This opening up can increase healing of the lesions and even minimise scarring. However, the disease may still return in the area treated or elsewhere on the body.
- Surgical removal. Surgical treatment of recurrent or severe symptoms involves removal of all involved skin. A skin graft (skin removed from another part of your body) or a skin flap (nearby skin that is pulled over to cover the wound) may be necessary to close the wound. Full surgical removal of skin in an area prone to boils and painful lesions can prevent HS from coming back to the treated area, but it may still reappear in skin nearby.
- Carbon dioxide laser. Depending on the severity of the disease (and where available), cutting lasers can be used as an alternative to conventional surgery. This innovative new technique is more suitable for people with moderate HS. A carbon dioxide laser ‘vaporises’ diseased tissue from the surface of the skin leaving an open wound, which is then left to heal. How long healing takes after the procedure depends on how large, deep and interconnected the treated lesions were. Staying in the hospital overnight is not normally necessary after this kind of surgery.
Ask your doctor if a surgical option could be suitable for you.
Medical Treatments
There is no cure for hidradenitis suppurativa (HS), but early treatment can help manage the symptoms and may prevent new lesions from developing.
The purpose of HS medical treatments is to:
- Try to clear or reduce breakouts
- Try to prevent scarring and tunnels beneath the skin
- Try to prevent new breakouts
Treatments depend on the size of the affected areas and whether the sores are painful or become infected. Mild cases might be controlled and relieved with self-care measures like warm compresses and regular washings with antibacterial soap, while moderate cases may require topical medications (those applied to the sore or damaged skin) and/or oral medications (those taken by mouth). It is important, however, to remember that each case of HS is as unique as the person who has it. The length and course of treatment(s) may be different for each individual.
No one treatment works for everyone who has HS. One may even work for a while and then stop working, so it is likely that you will need to try a few different therapies or combinations before finding one that works well for you in the long-term. Your doctor may include one or more of the following in your treatment plan, and can explain the differences, benefits and side effects of each.
Non-steroidal anti-inflammatory drugs (NSAIDs) are a class of medications that can be used to treat the pain and inflammation of hidradenitis suppurativa (HS). NSAIDs do not control the disease, they only treat symptoms. That is why they can be taken daily or on an as-needed basis.
Long-term use of antibiotics may help prevent your HS symptoms from getting worse and lessen the chance of future lesions breaking out. These drugs come in pill form or in creams or ointments to apply to skin affected by HS.
Cortisone and other steroids are something the body produces naturally to regulate inflammation. Because they work fast, doctors give corticosteroids to patients with particularly severe and painful symptoms of hidradenitis suppurativa (HS). These drugs may reduce severe inflammatory lesions. They provide the same kind of relief as NSAIDs, but are stronger and are not meant to be relied upon for frequent symptom relief over the long term. Corticosteroids can have severe side effects, so they are usually taken for limited periods of time, often to relieve patients’ severe symptoms while waiting for slower-acting medications to take effect.
In moderate to severe cases of hidradenitis suppurativa (HS), the use of biologic response modifiers – or “biologics” – have been proven to be effective. Biologics are medications specifically designed to target your body’s immune system – they work by decreasing the body’s immune response.
Usually used to treat type 2 diabetes, metformin is being investigated by doctors on its benefits for people who have hidradenitis suppurativa (HS). When this medication is taken over a long period of time, it may help reduce the number and severity of inflamed HS nodules, and may help improve quality of life.
Some women with hidradenitis suppurativa (HS) may get some symptom relief by taking birth control pills (also known as oral contraceptives), which regulate hormones. For a woman, “The Pill” may decrease the pain and the amount of fluid that drains from her breakout lesions. Oral contraceptives may need to be taken for up to one year before seeing any improvement in HS symptoms. Certain birth control pills diminish some of the effects of so-called ”male hormones” (which in fact both genders have, in different proportions) such as skin oiliness and spots, and these are the types of birth control pills that may improve HS symptoms in women.
If your hidradenitis suppurativa (HS) does not respond to other treatments, your doctor may recommend using a drug from the retinoid family. Vitamin A-based retinoids have shown promising results in HS. It is not known exactly how retinoids work, but they can stop the secretion of oils from glands and can help dead skin cells shed normally in the hair follicles, preventing the blockage of pores.
Disclaimer
Please note that the information on this website is intended for informational purposes only and should not be used as a substitute for seeking medical advice or treatment from a healthcare professional. You should not use this information to diagnose or treat a medical condition or health problem. Speak to a healthcare professional if you have any questions about your health, medical condition, symptoms or treatment options.
References
HS Trust is a UK charity dedicated to raising awareness, understanding and support for this chronic, debilitating skin disorder. They aim to increase public knowledge and educate the medical profession on the symptoms, severities and treatments of HS.
The American Academy of Dermatology has been leading the way in dermatology for over 75 years. It is the largest, most influential and most representative dermatology group in the United States.
The Hidradenitis Suppurativa Foundation is a non-profit public benefit organisation dedicated to improving the quality of life and quality of care for individuals and families affected by hidradenitis suppurativa (HS).
Founded in 2011, The HS Institute was the first to recognise the need for a centre devoted to the care of HS. This hospital provides first-class compassionate care, acts as an education resource for patients, physicians and the general community, and fosters research into the causes and treatments for the disease.
