It can take years to receive a correct diagnosis of hidradenitis suppurativa. Because it is so hard to spot, it is sometimes helpful to go back to basics.
Here, we are going to talk about the basic questions people have starting their HS journey.
What Is HS?
Hidradenitis Suppurativa is a chronic, inflammatory skin disease that causes recurrent and painful nodules, boils, abscesses and lesions of the skin.
Watch the video to learn more about HS including:
- The common areas affected
- The 3 stages of HS
- How to manage your symptoms
What Causes HS?
The short answer is nobody knows. But, the long answer is that there are lots of ideas. Doctors believe the primary mechanical problem is follicular occlusion. Which is just a fancy way of saying your hair follicles get blocked. When that happens, the chaos you know as HS ensues.
There are a few theories on why this happens. The first is genetics. Research indicates that HS may be a mutation in a set of genes. A third of patients with HS have a family history of HS. But doctors think that the gene responsible for HS is autosomal. Which means that you don’t need to have a family member with the disease to develop HS. We have an article on the genetic theory of HS, which you can read here.
The second theory is the sex hormones (in women). HS most often begins in one’s teen years. The average age of onset is 20. A 2020 paper has shown that HS symptoms worsen around a woman’s period. The paper also found that menopause may exacerbate HS symptoms contrary to previous studies. So, some doctors believe the cause of HS may have something to do with sex hormones.
The third theory revolves around the immune system and a dysregulation or malfunction of some of the cells that usually keep us safe. This is the focus of a lot of research, but there are no definite answers just yet.
Areas affected by HS
HS can affect any part of your body, but it is mostly found in areas where your skin rubs against itself such as:
Underarms : Under The Breast : Groin : Ears : Back Of The Neck : Inner Thighs : Buttock
Do I Have HS?
If you think you have HS consider the following:
– Have you had a boil that becomes inflamed, heals and comes back at least once in the past six months?
– Or do you have scarring from boils that have healed?
If the answer is yes to these questions, then you may have HS. But, to confirm that you must see a doctor.
Symptoms of HS
The symptoms you experience will depend on what stage your condition is at. Remember, there are three stages in the Hurley model. Stage 1- mild, stage 2- moderate and stage 3- severe
During stage 1, you may not have many symptoms. And they can be hard to distinguish from other skin conditions like folliculitis. But HS is different. It usually occurs in the armpit, thigh, buttocks and groin. And it can also occur in the breast, chest, back and neck area, almost anywhere on the body.
In the mild stage of HS, you may experience:
- Pea-sized nodules
- Single painful abscesses or lumps
In the moderate stage:
- Your painful nodules may reoccur after they have healed.
- As well as new ones developing. Lesions will be separated by healthy skin.
- Painful nodules may occur in other areas where there were none before.
- You may develop scarring which tunnels under the skin. These tunnels are called sinus tracts.
And in the severe stage:
- Sinus tracts connect, and lesions develop and reoccur.
- There may not be healthy skin, and so lesions remain open.
- Because lesions don’t heal, the skin splits and they can become infected producing discharge with an odour.
Other symptoms that you may notice could be fatigue, pain, reduced mobility, and a high temperature.
I know this is a lot. If you think you may have HS, you should make an appointment with your doctor.
Pictures Of HS
To be diagnosed with HS, you must see a doctor. Your GP is your first port of call. And they may refer you to a dermatologist. Unfortunately, there is no blood test for HS. So, diagnosis relies on examination.
There are three stages to HS called the Hurley stages, and each has its own signs.
Persistent boils or blackheads. Particularly in the armpits, groin, buttocks, and genitals. But remember HS can affects lots of areas of the body, including the head and neck, behind the ears, arms and legs, and chest and back.
Signs of scarring with new or recurring boils separated by healthy skin.
Much of the skin is affected. Tracts and scarring connect. And new lesions can’t heal.
Your doctor will examine you and make a decision on whether you fit the criteria for HS. Then they will determine what treatment you need based on your stage. They may decide that a specialist is better placed to treat you and refer you to a consultant.
To rule out other conditions, you doctor may also take a sample of pus for testing.
What Can You Do If You Are Diagnosed?
If you have been diagnosed with HS, your first step should be to follow your doctor’s advice. The treatment they prescribe will depend on the extent of your condition. This may include medication or using a particular body wash.
Secondly, there are several home remedies you can use. For pain, there is a range of over the counter pain relievers from tablets to gels. For an active lesion, a warm compress can be beneficial. The warm compress helps bring boils to a head and help them drain. It may also reduce pain. Some people also find essential oils helpful.
Thirdly learn. There are lots of resources online about various triggers of HS. The HidraWear blog is a great start. Diet, stress, smoking or fabric may exacerbate your condition. So, learn about your body and triggers.
For more information, see our post on daily HS management here.
Other Conditions – HS Comorbidities
Sadly, there are many comorbidities associated with HS. Comorbidity is a medical term that means two or more conditions that occur at the same time. Sometimes one condition worsens another. A comorbidity can be a physical or mental illness. It can even be a combination of the two.
Once you understand what a comorbidity is, you need to seek the help you need. Whether for an existing condition or prevention of a future one.
Common comorbidities include:
- Crohn’s disease
- Polycystic Ovarian Syndrome (PCOS)
- Metabolic syndrome
- Cardiovascular Disease (CVD)
- Diabetes type 2
It might seem scary but remember that everyone’s body is different. And just because one person gets a condition, doesn’t mean that everyone will. Plus, lots of these conditions are present in the general population. HS forms a higher risk, that’s all.
Comorbidities are often widespread conditions that we know a lot about. Doctors have lots to learn about HS. But the management of diseases like diabetes or depression is far more advanced. The most important thing you can do is engage with your health provider and get the best strategies you can.
Quick Recap FAQs
HS can affect anyone at any time. But women are proven to be three times more likely to be affected than men.
There is no known cause of HS but it is thought to be linked with abnormalities in the skin’s immune system. Some studies have shown it to be hereditary and 1/3 of patients have a family history of the condition.
HS causes recurrent and painful nodules, boils, abscesses and lesions of the skin. These can burst and leak exudate which can sometimes have an unpleasant smell. The lesions can also form tunnels under the skin and cause painful scarring of the affected area.
HS most commonly occurs during puberty or early adulthood, but onset can occur in childhood and later in life.
It can affect any part of your body, but it is mostly found in areas where your skin rubs against itself such as the armpit, under the breast, groin, thighs and buttock.
If you have noticed a boil reoccurring in the same area more than once in the last 6 months, we recommend getting it checked by your doctor as it could possibly be HS.
How Hidrawear Can Help
Our wearable wound management garment is specifically designed for people living with Hidradenitis Suppurativa (HS).
Watch the video to learn more about how it works.