Find out all about clinical trials.
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.
“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.
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:
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.
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.
Hidradenitis suppurativa (HS) commonly occurs around hair follicles where many oil and sweat glands are found, and where skin rubs together, such as:
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.
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:
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.
The following suggestions may help relieve soreness, speed up healing and prevent any already-formed lesions from getting worse or spreading:
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.
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:
Ask your doctor if a surgical option could be suitable for you.
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:
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.
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.
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.