HS FAQs

Hidradenitis Suppurativa is a chronic skin disease. Painful boil-like lesions form on and under the skin. Eventually, the nodules  can form tunnels under the skin that connect and spread. The condition is considered progressive. Which means that over time it may worsen. The parts of the body most affected by HS are:

  • Under the breasts
  • Genital area
  • Perianal area
  • Underarms
  • Thighs

However, HS has been known to affect almost any part of the body. HS is also associated with other conditions like diabetes and Crohn’s disease. Understanding HS can be confusing. Here we have compiled a list of frequently asked questions and their answers.

General Queries

Is HS contagious?
No HS is not contagious. HS develops, usually during puberty. But one cannot catch HS. Nor can it be transmitted. And while a lesion can become infected, HS is not an infection.
What are the lumps called?
Everyone has different names for them. But generally, they are called lesions or a flare. They may also be called:

  • Boils
  • Abscesses
  • Nodules
  • Cysts

Not all flares look or feel the same. So, some will use these terms interchangeably. While others are referring to different types of lesion.

Will my HS get worse over time?
HS is considered progressive. This means that generally speaking, the condition worsens over time. However, many factors affect the progress of your HS. Early diagnosis and treatment may slow the progression. And some lifestyle changes may also have a positive effect. But then again, they may not. Everyone is different.
How often will I get a flare-up?
Everybody is different. Women are more likely to get HS. So, hormones may be a trigger. Therefore, you may notice particular times of the month you get a flare-up. But you may also see other triggers, like foods or stress. Unfortunately, HS does not run on a timetable.
Is fatigue a symptom of HS?
Many people with HS, report feeling fatigue. It may be that fatigue is an unrecognised symptom of HS or an associated disease. Or perhaps a person is simply recovering from an infection.
What is a sinus tract?
You may have heard that HS causes tunnels under the skin. These are also called sinus tracts. Sinus tracts are one of the key characteristics of HS. Along with reoccurring lesions.

Causes of HS

Is HS caused by smoking?
HS is associated with smoking. Which means that more people with HS also smoke than the general population. There is also some evidence that quitting smoking can help reduce HS symptoms.
Does obesity cause HS?
HS and high BMI are associated. But it is unclear whether HS is caused by obesity or having HS causes obesity. There is some evidence that weight-loss improves flare-ups in people who are overweight. And because of the friction in some parts of the body, extra weight may exacerbate lesions. If you need information on managing your weight with HS, check out our article here.
Is HS caused by something I did?
No, absolutely not. This is not your fault. Nobody knows what causes HS. But what is clear is that many people from different demographics develop HS. It may be that no one thing causes HS. Or that some people are unlucky. But more research needs to be done to definitively say what causes HS.
Does a poor diet cause HS?
No. Nobody knows what causes HS. But what we do know is that plenty of people have poor diets and don’t develop HS. Therefore, there must be another factor at play for people with HS.
But does diet affect HS?
There is some evidence that certain foods can trigger an HS flare-up. The three main foods are:

  • Dairy
  • Brewer’s yeast
  • Sugar

However, triggers are very personal. So, what triggers you may not trigger someone else. For most people, it is trial and error when finding out the effect of diet.

Is HS Genetic?
That’s a complicated question. It would seem there is some evidence of genetic factors in about 30% of people with HS. But as nobody knows for sure what causes HS, there’s no clear-cut answer. We need more research to confirm a genetic cause. We have an article about genetics too if you would like to know more.

Management of HS

Can I exercise or play sports?
Yes. In fact, it is encouraged. Exercise and sports not only provide joy to people’s lives, but it also helps maintain a healthy weight. That said, if you do not feel well, you should not force your body to exercise. You may need rest to heal. You may decide to do light exercise or none. Certain activities, like swimming in a pool, should be avoided if you have an open wound.
Is there specific clothing I should wear?
Some clothing can help prevent friction. So, if you have a flare-up, you should consider dressing more casually. Some people prefer to cover flare-ups or scars, but that is a personal preference. Most importantly, wear what is comfortable for you.
Can I shave/wax if I have HS?
Doctors advise caution when it comes to hair removal. Shaving is considered safer than waxing but still risky. If you have an active flare-up, no you shouldn’t shave or wax. There is a risk that you disturb the lesion which will only cause yourself pain. If you have no active lesion, then it really is up to you. Some people prefer not to, in case they damage the skin. Which as you know, is already sensitive. But it is totally up to you.
How do I prevent a flare-up?
This is a tough one. If your doctor recommends a wash or a medicine, use it. And getting to know your triggers and then avoiding them may also prevent a flare-up. Yet, sometimes it happens regardless of your efforts. Unfortunately, it is the nature of the disease.

Diagnosis

Can HS be tested for with a blood test?
Unfortunately, no. HS is diagnosed by examination and patient history. Usually, if a boil is recurrent or there is evidence of tunnelling, HS can be diagnosed. Your GP may refer you to a consultant dermatologist for confirmation and treatment.
What is the difference between HS and a skin boil?
A boil comes up and resolves itself. Lots of people get boils for lots of reasons. Whereas HS reoccurs even after a lesion has healed. When it progresses, HS creates a tunnel under the skin. Over time these tunnels can connect. As well as that HS spreads to surrounding tissue and other parts of the body.
Is it like acne?
Yes and no. Some evidence has shown that HS has a lot in common with certain forms of acne. And indeed, both HS and acne share many triggers. But HS also affects other parts of the body. And it is more prone to infection. Acne, in general, does create tunnels under the skin. Whereas HS does, and HS involves the immune system, but it’s not fully understood.
IS HS associated with other diseases?
Yes. HS is associated with several other conditions and diseases. This is called a comorbidity. These include but are not limited to:

  • Diabetes type 2
  • Polycystic Ovarian Syndrome
  • Metabolic Syndrome
  • Inflammatory Bowel Disease
  • Cardiovascular disease

This does not mean that if you have HS, you will also have these conditions. But it does mean your doctor will consider you at risk. This is because a greater number of people with HS also have these conditions than people who don’t.

Treatment

Will I need surgery?
You might, but that is a decision you will make with the help of a doctor. Some people with more severe HS need a kind of surgery called excision. There are other surgical procedures called de roofing, or incision and drainage. There are some laser therapies and Co2 laser surgery also.  Your doctor can advise you on the best option for you.  But not everyone needs surgery, especially if they are in treatment. Everybody’s condition takes its own path at its own speed.
Are there medications for HS?
Yes, but they are not for everyone. Again, your doctor can help you to decide if they are right for you. Your doctor may also prescribe antibiotics if you have an infection. Or sometimes an anti-inflammatory cream or gel. There are stronger medications called biologics, that act on the immune calls. These are used in more severe cases of HS. There are various treatment guidelines for HS, and your doctor should be familiar with them. If they are not, maybe ask them to read up on the guidelines, or find a doctor who knows about HS and effective care. We have a post all about the stages of HS and their treatments (including medications) here.
Is HS fatal?
No. HS is not itself fatal. Of course, any infection can have complications, especially if not adequately cared for. Sepsis is a toxic response the body may have to infection. It can cause someone to go into shock. Thankfully sepsis is not common in HS. But proper hygiene,  wound care and infection treatment are vital. As well as that, some people with HS may be more at risk of developing some skin cancers. This is not a common occurrence, but if you have any concerns about wound care or changes to your skin, contact your doctor.
When should I see my doctor?
At the point you feel concerned for your health. And if you are reading this, I’m guessing you have some concerns. Generally, if a boil is reoccurring or infected, you may need treatment. So, make an appointment and take care of yourself! Never feel like a burden or that you are wasting a doctors time. You have the right to receive treatment and care like everyone else. And it is important to address any health concerns as soon as possible.