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Hidradenitis Suppurativa (HS) is more common than you might think. It affects up to 1% of the population, but many people do not realise they have it or they may have been misdiagnosed with something else. If after reading this you think… “that sounds like what I have”, it might be time to see a dermatologist who specialises in HS.
What is hidradenitis suppurativa (HS)?
HS is an inflammatory disease that causes painful, tender lumps and boil like lesions to form in delicate areas of the body, like in the armpits, the thighs, the groin, and buttocks. However, it can occur almost anywhere in the body, like the neck, scalp, chest and back, under the breasts, and legs and arms. These lesions are very slow to heal, can become very swollen, and drain pus and blood continuously. It can be very debilitating. A lot of people with hidradenitis suppurativa feel embarrassed about it. But HS is nothing to be embarrassed about, it is not your fault that you have it, and there is help out there for you.
What causes HS?
The exact cause is not fully understood, but we do know that:
Inflammation is a part of it:skin infection
Inflammation is usually a good thing. It is your body’s immune system responding to an irritant, like for example when you graze your knee. The immune system sends different cells to clean up the area, remove any bacteria that might have entered the skin, and prevent an infection. Once you are safe, the immune system calms down, and the inflammation will go away.
With HS, the immune system gets stuck in the inflammatory process, and the inflammation becomes chronic. It doesn’t switch off. We do not fully know why the immune system is triggered, or why certain immune cells behave the way they do, but doctors and researchers are doing their best to find out.
Follicular Occlusion – In other words, blocked hair follicles:
A hair follicle is a tiny tube-like structure that your hair grows from. They are all over our body. In HS, they become blocked. The base of the follicle begins to fill up with cellular material like dead skin cells and fluid. Because of the blockage, the follicle will expand, and eventually burst, releasing the contents into the surrounding areas. This causes more inflammation and the skin, in its effort to heal, will form little tunnels, or create scars in that area. There are several reasons why the follicles can become blocked:
- The structure of the follicle is different in some people with HS
- There are different amounts of certain cells in the hair follicles of people with HS
- Nicotine from cigarettes can cause a certain type of cell to malfunction, it releases an abnormal amount of a protein that can block the follicle
HS often begins for boys and girls during puberty or adolescence. This suggests that fluctuating hormone levels can play a role in HS. Although there is not a lot of evidence to support this at the moment.
Many women notice their HS flares up just before their period, or that certain birth control pills can help with their flares. Also, some women report reduced symptoms during pregnancy, while others experience worse symptoms. If you think your HS is triggered by hormones, speak to your doctor about it.
About one third of people with HS also have a family member with the disease, like a parent, aunt, or cousin. There is lots more research to be done on genetics and HS.
In some cases, you might be genetically predisposed to developing HS. And various environmental factors can trigger changes in your cells that cause HS to form. Triggering factors could be smoking, the western diet (high fat and high sugar), friction caused by skin rubbing together, or certain foods like yeast. It is important to know that having HS is not your fault though. If you are genetically predisposed to HS, the possibility of it developing was there from the time you were born, something just triggered it to develop.
Symptoms of HS
- The most common sign of HS is a lump that you would describe as a boil, abscess, or nodule, under the skin. These typically break open and discharge pus. And they will heal over but leave a scar.
- Areas like the armpits, thigh, groin, buttocks, and genitals are most commonly affected, but it can occur almost anywhere on the body.
If this happens frequently, it could be HS and you should go to a dermatologist who specialises in HS.
- As HS progresses, more and more of these lumps will appear, and they might become connected by tunnels under the skin. This will cause lots of scars that pull the skin tight and leaves holes in the skin too.
- It might become difficult and painful to move your arms or walk if you have swollen HS lesions.
- The lesions may drain continuously for days, weeks or even months. Or they might drain and then fill up again and continue this cycle.
- A lot of people with HS experience other symptoms, in particular before it flares up. These include: a feeling of fatigue, general malaise (feeling unwell), headaches, redness of the skin, tingling of the skin and itching.
Unfortunately, a lot of people with HS are misdiagnosed for years, and do not receive the correct treatment until the disease has progressed to a more severe stage. That is why it is so important to recognise the signs and not to be embarrassed about going to the doctor. If you get a diagnosis in the early stages of HS, it can be very well managed with medication.
If you suspect you may have HS, it can be easily diagnosed by the right doctor. A good dermatologist will recognise it quite quickly.
The doctor will ask you about your history, when it started, has it gotten worse over time, what areas of the body are affected and maybe if there is family history of the lesions.
They will ask you about your symptoms, like when do the lumps appear, how long they last for and if they go away.
They will visually examine the lesions, and because they are trained to know the difference between HS and other similar skin conditions, they will be able to make the diagnosis.
They might touch or squeeze the lesion or press the skin around the area. If this is painful, let them know.
They might take a swab of the drainage to rule out an infection.
Once they have your diagnosis, there is a series of different treatments available. This can be a frustrating process both for patients, and for doctors because sometimes a treatment may not work, and they will try something else.
It is easy to start to feel like a guinea pig. That is why it is important to find a doctor who knows about HS and the specific treatment guidelines. Your doctor should be using the treatment guidelines to select the appropriate treatment. If that does not work, they will try the next one in the guidelines, or a combination of them. Please bear with them. It can take some time before you find the right treatment for you.
Also, if you do suffer with a lot of pain from the HS, let your doctor know. Keep a diary of symptoms and pain. Be as descriptive as possible so they can prescribe you effective pain relief. Rate your pain out of 10. Use descriptive words for your pain, is it stabbing, aching, throbbing, stinging etc. The better you can describe your symptoms, the better your doctor will be able to help you.
The most important thing is to get treatment and also support. Support from your loved ones, and from other people with HS. There are lots of support groups online and organisations out there to help you. You are not alone, and there is nothing to feel ashamed about. You have the right to your health, and to receiving treatment just like everyone else in this world.
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