Living with Minor Hidradenitis Suppurativa

Monday, 13 February 2017

Following me on twitter, you will know last week I had a recent flare up of a skin condition I have. Being the worst one I have had in about 7 years and being my first in a year and a half, I thought it would be a good time to sit down and talk to you guys about this condition, what it does to not only my body but my mind as well. I want to raise awareness for this condition as I know there are probably many that have it and haven't been able to put a name to it, are too embarrassed to go to the doctors or have actually gone and found that the doctors aren't clued up on it and aren't able to give them the help or advice they need. Following reading this, if you have any questions to ask, feel free!

To see the words Hidradenitis Suppurativa you're probably thinking what on earth is that? Hidradenitis Supprativa (HS we are going to reference it as for this post) is a chronic skin disease that causes inflammation and pus forming in particular glands (apocrine gland, these are the larger sweat glands on your body) which are situated in the underarms, groin, inner thighs, breasts and buttocks. The formations of pus in these particular glands causes large painful bumps to appear under the skins surface. How long these bumps stay for, the size and how badly they scar afterwards depends on how bad your own case of HS is. When these bumps eventually do burst, whether through lancing or through it's own accord (sometimes with assistance), the pus is a horrid smelling mixture of blood and pus and is usually brown, red and the pale yellow/white that pus tends to be. Larger bumps still continue to secrete the pus a few days after. The scars don't tend to fade easily and are large and dark, usually a brown/red colour. 

The exact cause of this disease has yet to be discovered and while there is research into it, the condition is so rare that just not enough awareness has been made for it for doctors to look into it properly. One factor seems to be hormonal changes, which is why it's normal for this skin condition to appear after you begin puberty. HS is most commonly found in women and having menstrual cycles, women tend to find their skin will flare up around about the time of their period.There are also science to back that it could possibly be diet related and despite popular belief, aren't caused by the patient simply having poor hygiene. 

I'm going to share with you my own story of HS, which might help others understand it a bit more. Mine started up when I was 11 years old, but I didn't found out until I was 22 that this condition I had for so long actually had a name to it. I know for many others, they have gone a long period of time in their life not knowing about this condition. There's not very much awareness for it and is often fobbed off as other skin issues, therefore the treatment required isn't given. 

We were on our family holiday to Majorca when I was 11 years old, it was humid and with the temperature most days being over 30 (averaging about 33), it was pretty damn hot. Due to the heat, I was obviously wearing shorts and a vest to stop me from overheating (this was brave of me as I was covered in a horrendous sunburn that I got on the first day of the holiday). I noticed on my inner thighs there were a lot of painful red lumps. I didn't show anyone them and just shrugged them off as a heat rash. Little did I know these bumps were going to become recurrent and return at least once a year. The lumps were solid and extremely painful to touch. A few weeks after my holiday I noticed the bumps had gone but left dark scars all over the inside of my legs. I noticed I started to get them under my arms and they often restricted certain movements while I was in P.E. It seemed to be restricted to only my thighs and underarms that I was going to get these bumps. 

I was wrong. When I turned 16, the bumps started to appear in two other places, at the end of my tailbone (roughly) and I had two occasions when the bumps were between my boobs. Due to the appearance on my chest, I have a small red linear scar in between my boobs now that doesn't seem to fade despite this area not being affected for about 6 years now. The ones that I get on my behind can go one of two ways. I can either be in pain but it doesn't affect my living standards (for the time of the bumps being there) and there are the other times when I am in blinding agony, cannot get out of bed, walk or even roll over in bed. The bumps are so sore and large that I am pretty much bed ridden until the pressure is removed from them. 

This is what happened to me last week and was the cause of me needing to take some time off work as I wasn't actually physically capable of working for that period of time. I was lucky my work was understanding of me being off for this reason as I worried that having to take time off work for a skin condition sounded like a pisstake. 

So, when these bumps arise, what can be done? Well, there are a whole heap of natural ways you can help relieve the pain of them such as applying tea tree oil, hot/compress, aloe vera gel and lots lots more. There are also methods that you can take through the doctor such as antibiotics (these do not work for me as they are not caused by bacteria), lancing and in extreme cases, surgery. I decided against ever getting lancing done not only due to how sore it would be, but I worry about the idea of an infection starting in the skin due to it. I tend to use a combination of a hot compress and a hot bath with epsom salts to relieve my bumps and within 3 days they go. The bumps I get under my arm I manage to catch before they grow into anything major and severely painful by squeezing them in the shower, which saves me a lot of pain there.

So, how bad really is my HS? Mine is minor, somewhere between stage 1 and 2 (there are 3 stages). I am lucky in a sense as while my HS flares up at least once a year (most has been 3 times), there are sufferers of the disease that have flare ups constantly and these painful lumps never seem to go away for them. They often have them over their groin as well and for some people they aren't ever able to have a decent standard of life due to this skin condition, they can't work, walk or do much for themselves. So in this case I am extremely lucky that mine isn't as severe. 

The scars this skin condition has left on my body have had their impact. I am insecure about them, so I hated having to do swimming in school and it often leaves me insecure when it comes to being intimate as the scars are in intimate regions. The skin on some of the scars is very tender and I can push my finger in a lot more in these areas than on non-scarred parts of my skin. 

As mentioned before, I have had flare ups that have left me unable to do anything for myself. These times take a very severe mental toll on me. I hate not being able to do things for myself, so when I'm stuck in bed not able to move or even get comfy, let alone get up to go to the toilet or even make myself food, I feel useless and I get incredibly depressed over those days. I spend the days crying, not only in pain, but at how much and how debilitating this skin condition can be for me. I do wish I didn't have it, but I know there are tonnes of others that have this so much worse than I do. As the skin condition can be hereditary I do worry that my daughter is going to get it as well, but I hope, learning from my own experiences of dealing with it that I can help her as much as I can.

I just wanted to quickly explain HS and the effect it has on me and where I suffer from it, along with the few things I do to treat it. I hope this has either helped someone either learn about their own, perhaps feel a bit better that someone else is suffering from it and is sharing their experience or at least make people aware of what this condition is. I know mine isn't major and mine doesn't have a massive impact on my life, but it is still something I suffer from and is something that I will always have to deal with in one way or another. 

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