No I can barely pronounce it either! What is it with me an unpronounceable conditions (circumvallate placenta I’m looking at you).
I mean who came up with the name Hidradenitis Suppurativa? It sounds like the Latin version of ‘super hideous’, which while might be apt, it’s not of any comfort to sufferers who often spend a lifetime feeling incredibly self-conscious and hide their illness from others. I think all in all, whoever came up with the name should be shot repeatedly in the face with a loaded nappy cannon and by loaded I mean fully loaded.
Joking aside, I’ve been recently diagnosed with Hidradenitis Suppurativa or HS which is much easier to say and have just undergone a small procedure on my armpit for it.
But what is HS?
Officially it’s a chronic skin condition that’s in the auto-inflammatory family and is something that sufferers will often battle for life on and off. It can vary from person to person, but is characterised by often painful boils and abscesses that tend to reoccur in the same place, which can lead to tunnelling (a joining up under the skin), a constant weeping from the affected site and scarring. In more severe cases, sufferers can have to undergo surgery to remove large parts of skin and require skin grafts as well as a myriad of ongoing treatments and meds.
It tends to occur on areas of the skin like the armpit, groin, buttocks and under the breasts. Women are more likely to be affected than men. There is no cure, it’s not contiguous and is not down to bad hygiene or lifestyle, although obesity and smoking can be risk factors, however it’s most likely, as with most things down to you genes.
Nice, eh?
No, it’s a pain the bleedin' arse! And due to the nature of the condition, many people are left feeling hugely self-conscious and indeed struggle on, hiding their pain for many years, even from doctors. Some people can also find that getting a firm diagnosis takes time.
And it is very much a hidden disease, obviously for the reasons I mentioned. But since I was diagnosed and began talking about it, I’ve connected with lots of mums who also suffer with it. It’s amazing. I honestly hadn’t a clue and therein lies the problem. As is the case with many auto-immune / auto-inflammatory diseases, they tend to be something that people suffer with very much on the inside or is something they hide from the outside world. But they can be hugely draining and painful and others may not realise just how much a friend or loved ones is going through.
But talking is key.
If I’ve found one thing in going through my battle with PND it’s this. The more we talk about these things, the more we bring them out into the open and smash any stigma around it. There’s this outdated notion that things like this are perceived to be unpleasant or unpalatable or ‘too hard’ to talk about and so it's better swept under the carpet. That’s all old fashioned bullshit in my book. And once something is ‘normalised’ and talked about in a stigmatised way, you’re on a much better footing.
For me, I suspect HS is something I have been suffering with for many years, but I hadn’t got a clue it existed. You may already know I suffer with cystic adult acne and for shits and giggles, the gene fairies decided that I should also suffer with boils and abscesses too. For most of my life I suffered with painful boils on different areas of my body, but I didn’t think it was anything other than my shitty skin doing its thing. It was just something I had to put up with. Painful, often large abscesses on the back of my neck, groin and various other weird places on my body became common place. Throbbing pain, swelling, headaches and scarring became part of my life for years and years.
It wasn’t until at the start of this year however, a few months after I’d had Luke that I started to notice something going on with my armpit. I noticed a steady stream of what’s best described as ‘sticky stuff’ under there, but I didn’t feel a noticeable outward boil or even a spot, so ignored it, put it down to being sweaty (even though it was very different to sweat), my hormones readjusting after Luke and running abound after two smallies.
But it persisted. It became painful and annoying. Every time I put on a top, there would be sticky stuff on the armpit.
But again I didn’t investigate. By this time we were in lockdown and my armpit was way down the list of priorities.
And yet it went on, until it became sore enough to warrant me having a look. By this time I was getting temperature on and off on the affected side of my body, I had glands up in my groin and neck on the affected side and felt very run down.
I had a poke around the armpit and it was swollen and well there was a bit of a Niagara Falls moment. Yuck. Yuck. Yuck.
As it was during the height of the lockdown, I had to have a phone consultation and I was prescribed antibiotics and dutifully took them.
There was a modest improvement, but I was left with a small hole and a regular stream of the ‘sticky stuff’. Over the time the hole got bigger and never fully closed over. So I was left with this very odd, open wound under my armpit that was showing no signs of closing.
The weeks and months went on and again it got put on the long finger. Why do mums always do this with their own health?
Anyway, things were not improving. If anything the hole was getting bigger and a second and third hole had started to appear. Tiny, but I knew they would grow as had the original one.
I went back to the GP and this time was able to show him the area.
Immediately and with my history of skin problems, he suggested it could be HS and referred me to a surgeon who he said might remove the entire thing.
I remember walking about of the GP being a little shocked. I hadn’t expected this nor could I even pronounce the condition. I chugged my extra strong antibiotics and waited for an appointment.
A couple of weeks later I met with my consultant who confirmed it was HS. I had to get him to write it down and pronounce it three times. He told me that he was going to perform a small procedure called a seton stich, rather than a full excision which would leave me with a large scar and bigger recovery.
The purpose of this procedure is to put a stitch inside the holes to keep them open, which at first I though was counter-intuitive, but it’s meant to drain what’s in there and heal from the inside out. You are given meds to take concurrently and then you might have to go back for a further procedure in about six weeks.
So yesterday was the day of the surgery, a day case, but under general anaesthetic. All was fine, a small job and I was left with minimal pain.
I had a consultation with a dermatologist and she will manage me going forward. I’m on antibiotics for two months while the stitch hopefully does its job and will be removed.
So how do I feel about having HS? Not great. In one way I’m glad to have a name on something I’ve struggled with for so many years. It puts a lot into place. An auto- inflammatory / auto-immune condition can leave you feeling very drained and tired and this would explain a lot. But in another way it’s a let-down to realise you’ve got to manage this chronic condition for the foreseeable future. It’s not something that can be cured. It will flare up and down over my life and things will trigger it. Stress, hormones, possible diet /weight. But it won’t go away. There’s no magic pill out there to make me have good or even semi normal skin.
So I’m going to talk about it. It’s all I can do. It’s what I did when I came out of the darkness of PND and it helped not just me, but other mums too. And so I’m hoping to be able to do the same thing again this time. Get in touch if you suffer with HS and don’t be afraid to talk about it, to tell others that you’re in pain, feel unwell or might need down time.
There are some good supports and resources out there to link in with –