Health: Skin

My worst skin issue is Hidradenitis Supprativa (HS) which developed when I was 8 or 9.  This is a skin condition that causes boils or abscesses around areas with sweat glands.  It is actually an inflamatory condition completely unrelated to hygiene or diet which causes inflammatory skin lesions which unfortunately can then become infected.

There is often a hormonal component to it for ladies and some people see flares around their period, which I did.  My HS started before puberty and worsened when I reached puberty.  I started using a Mirena IUD in my 30s, which includes progesterone and stopped my periods.  I have found that since using this, my HS has decreased in severity.  I used to have multiple boils, linked by cavities in the skin called sinus tracts and they would leave awful bright pink scars.  Now though, my HS is largely blackheads and smaller lumps and generally I only have one larger lesion at a time and sometimes I have no larger lesions.

My HS was not diagnosed until my late 20s in large part because it's a skin condition that was not definitely named when I first had it.  I have had long term low dose antibiotics (early 20s), oral antibiotics throughout my 20s and 30s when I had bad flares and then I later used sterzac and dalacin.  Sterzac was a bath additive that helped prevent infection of the sores and the spread of any bactierial infection.  It was great but it became hard to find.  Now I use Dermol 600 in the bath and Dermol 500 as a moisturiser.  Dalacin was not so great.  Yes it cleared up my skin so I had no blackheads or boils but it also left my skin thin, red and itchy.  I had learnt to live with my boils and I found it easier to stop using the Dalacin.  

I am lucky that my HS has decreased in severity and I did not have the most severe form, even when it was at it's worst.  I think having HS has given me a high pain tolerance.  Having open sores between your legs that you have to sit or that rub as you walk is hard but after so many years, I am very good at ignoring it and carrying on as normal.  I definitely dressed to hide the scars under my arms and was lucky that none of my partners ever made me feel bad.  I know intimacy can be an issue for some with HS.  There is a lack of understanding that it is in no way contagious and is absolutely not the fault of the person who has it.  It does not mean they eat badly or that they are dirty.

Understanding about HS has changed over the years and every few years I look it up to see what is new.  When I developed underactive thyroid in my mid 30s, I was surprised to discover that both HS and glandular fever (Mono) are conditions that had some sort of anecdotal link to later developing underactive thyroid.  In the years since, this link has been proven statistically. 

It’s not understood but there is a link between HS and metabolic issues in general.  So not only do those with HS have a higher risk of developing underactive thyroid, but also type 2 diabetes and Metabolic Syndrome, which is a cluster of related metabolic issues that increase risk of diabetes, heart issues and strokes.

It has also been found that those with HS have a higher chance of developing skin cancers.  I guess it’s not surprising, given what our skin goes through on a daily basis.

Those with HS often have mental health issues and depression because it can be a very difficult and painful condition.  I think that the way my brain works and how matter of fact I can be has very much helped me.  It hasn’t affected my relationships and while it does affect what I wear, the reality is I am not much of a one for displaying those parts of my body anyway. 

I think the biggest thing is swim wear.  I buy swim dresses, so the tops of my legs are partially disguised at least.  I think if I wore a bikini, I would feel a little too on display.  Even if I lost all my excess weight and had a bikini worthy figure, I wouldn’t wear one.  I suspect I will be all about swim skirts and swim shorts…  There is luckily so much more choice and fashion around swim wear now.

The other thing I am conscious of is not lifting my arms up while wearing sleeveless tops.  I tend to prefer short sleeves because of this and only wear vests and camis around the house or in the very hottest of weathers.  When I do wear them out, I am careful, no dancing with my arms in the air!

The other thing about HS is that it is linked to obesity.  There is a little of chicken and egg uncertainty around HS and obesity.  I know I was not obese when I developed HS at 8 or 9 and the times in my life when I have been thin, my HS has not altered.  Yes, rubbing does make it less comfortable.  I personally believe HS makes you more likely to become obese because of the poorly understood metabolic connections.  Maybe losing weight will help my HS now.  I really don’t know.

I did for some time ignore and neglect my HS.  I had stopped using Sterzac when I had been unable to get it.  When I decided to start doing something about my weight and improving my health, it meant taking care of everything.  In a previous post I have already explained a little of how my HS triggered my desire to lose weight.  I understood that one day, I just wouldn’t be able to fight off the skin infections. 

Reading that statistically, those with HS have a lower life expectancy made me really think about how I was looking after my skin.  I have experience with wierd skin infections and have seen just how serious skin infections can be and what the long term consequences can be.  My father does no have HS but spent time in intensive care and lost a chunk from his leg.  He now has to take antibiotics permanently as the infection is in his blood.  My husband also changed jobs and does a lot of diabetic and wound care in his current role. 

All this together made me realise that as my health declined, my HS would increasingly become a route for skin infections.  That my sores would eventually become a real issue and that one day I would need others to care for them on a regular basis.  I also realised that day would come sooner if I didn’t lose weight because you have to be able to reach things to care for them fully.

The first step in taking better care was looking for a replacement for sterzac.  I went to my pharmacy and there is one particular pharmacist who has always been very knowledgeable and approachable.  I asked him if he knew of a replacement for sterzac and we discussed my skin.  He gave me some dermol samples and I asked my doctor to prescribe me some.  I now have a repeat for Dermol 600 which I use in baths.  This is I find the best way to ensure all my skin is treated.  If I can not bath, I use Dermol 500 as a moisturiser.  I probably still do not use either as much as I should, but I am getting better.

Generally, my skin is weird.  I get all sorts of things.  I had a large cyst on my forearm that eventually became large enough to be an issue and frequently hurt.  It was removed.  I have had infected cysts that have had to be drained.  One time I had an abscess on my lower back that saw me in hospital with a spiking temperature.  When they remove an abscess they leave a hole and in my case it had to be packed with an algae substance and then dressed.  This was to make sure than skin did not just grow over the hole, but that new flesh grew from the inside.  I had to bath to remove the algae each day and then have a nurse repack it.  It took a while to heal.

My first more unusual skin infection was Erysipelas or St Anthony’s Fire on my face.  It’s a bright red area full of tiny blisters that burns.  I still to this day know that when I blush or turn red, if I look closely I can see that my skin pigments differently where I had it.

Then there was my weirdest skin infection.  One side of my face became swollen with many tiny blisters.  I looked like a cross between Peppa Pig and Billy Idol.  Even though I was on it as soon as it started developing, so I was on antibiotics and antivirals straight away, it still continued to spread from my mouth up my cheek towards my eye.  I ended up having a higher dose of antivirals and a second type of antibiotics.  Although it was a short lived infection, it left me very tired for months and blood tests a little later were not quite right in several areas.  I cannot remember if it was liver or kidney and blood sugar.  Things did return to acceptable levels though.

Nothing was conclusive about what caused but it is now thought I had a first flare of herpes, cold sore, which was infected with cellulitis.  I had a few days before stayed with someone who was having a flare.  The next time I had a cold sore, it had a slightly less typical look to it and I had antivirals again.  It was not easy to get them!  I first went to a pharmacy to see if there was anything they could give me that was strong enough but when they looked at it, they felt I needed stronger medicine that would need to be prescribed, especially with my history. 

It was the weekend so I called 111 and I explained that I had already been to a pharmacy but as the call handler took me through their script, it was clear that cold sore did not fit in a more urgent box.  They tried to send me to another local pharmacy.  I refused this and explained again that I had already been, that I needed something more.  I then later had a call back from a nurse who triaged me as needing to speak to a Doctor.  He called me later in the evening and I was just able to get to the late night pharmacy before it closed.

I also seem more prone to fungal infections.  I have had one on my face, near my eye and more recently I had one under my arm.  The one on my arm recurred a couple of times before I finally managed to get rid of it.  I had to have a cream that you were only supposed to use for a limited amount of time.

Apart from my HS, I also have a little eczema and blepharitis.  Blepharitis has been explained to me as being a little like eczema of the eyelids.  I get very dry eyes and my tear ducts get blocked.  I have to clean my eyes with special wipes and it is definitely worse at times when my allergies are worse.  My first flare was the worst and I had to have an eye ointment.  Now I know what to look for, I am able to stay on top of it better.  It means I cannot wear contact lenses though.

My eczema is largely around my ears and in my ear canals.  It used to cause me to have many outer ear infections but I have become very careful of my ear hygiene in order to avoid using antibiotics.  I regularly use olive oil ear drops to remove ear wax and I keep my ears as clean as I can.  If I do start to have a flare I have steroid ear drops and I have a steroid cream I use for outside my ear. 

I used to have long hair but now have short hair and avoid having hair over my ears.  This helps keep my ears dry and avoid an eczema flare but I have to wear wooly hats to protect my ears.  Cold, wet and windy weather can easily trigger ear infections.  I also only swim in warmer months!  I also use neutral shampoos and have to switch shampoos fairly regularly.

I think I am lucky that I am pragmatic.  I am more interested in being comfortable than pretty.  Not being able to wear a bikini or have long hair is not a huge issue for me, but I absolutely understand that such things are more upsetting for other people.  I remember as a child being told that skiing would be a very bad idea because of knee issues I had and I was so upset.  I had never skied and had no plans to do so and it has not been a huge lose in my life to not ski.  Having restrictions placed on your future of any sort is tough, but I guess I have become used to it to some extent.  

I know I need to get better at regular skin care rather than just treating at the first sign of a flare.  It is definitely an improvement in self-care that I have all the appropriate medicines I am aware of now and do use them.  When life becomes tough, self-care often reduces.  It's harder to muster the enthusiasm for it.  I think this would be something I would encourage people to do as they get older and start developing health issues...  Look at which things you are neglecting that could become an issue and request the appropriate help.  Don't just use the products till they run out, replace them and keep using them.  If they are discontinued, find replacements.  Experiment with different things until you find a routine that works for you.  The fewer antibiotics you need to take, the better it is for your long term health.  

Do not underestimate the importance of healthy skin.