Thursday, 9 April 2015

Hidradenitis Suppurativa - My diet might be affecting my health after all

Other than being overweight, I honestly don't think my diet affects my health much, if at all. I think the consequences of being overweight for pretty much my whole life will hit me one day, maybe they are already starting to but I honestly don't think that I am unhealthy at the moment.

In saying that, I have been dealing with a minor health issue recently and it turns out that there may be a dietary component.

For the last several years I have been getting what I would describe as large painful spots in my groin and bottom. I really didn't think much about them, as they started in my late teens I just assumed it was a hormonal thing. When it didn't improve in my twenties I still didn't think all that much about it after all I am one of those unlucky twenty-somethings who still has spots from time to time.

My mother was diagnosed with a condition called Hidradenitis Suppurativa (HS) a few years ago, which is a condition that causes sort of abscess type things, usually in the groin and armpits. Still it didn't click that my 'spots' could be related. Mum is in agony with her frequent flair ups and lesions, my spots come and go as they please and although they are painful, I am not in agony and they usually go away in a few days.

There is not much research into Hidradenitis Suppurativa, well there is research but its not conclusive. Some research suggests a genetic component, you are 30% more likely to suffer from HS if one of your parents has it. Add that to the fact that its more common in women than in men and my chances are somewhere around 50/50. Still I wasn't convinced, I had done some research for mum when she was first diagnosed so I knew what the symptoms were. I was pretty convinced that wasn't my problem, I didn't feel I got the 'spots' often enough and I don't have any scars like most people get when they have them.

What I should have been able to realise, especially given my line of work (I am a nearly-qualified student nurse) was that I was in the early stages of the disease. The reason I don't have scars or tunnelling of my abscesses is simply because I haven't had the condition for years and they haven't started yet.

My thinking started to turn around last year when I realised that I was getting my 'spots' more often, and that they were appearing in the same place over and over again which is a characteristic of HS. I knew that getting a diagnosis from the doctor was unlikely and that even if I did there isn't much in the way of treatment options anyway. I decided to just keep an eye on things and go to the doctor when I felt I needed it.

The problem with that is that it takes so long to get an appointment with my doctor that every time I got an abscess and made an appointment, it had gone away by the time the appointment came so I would just cancel it. I figured there was no point in going if there was nothing for them to see.

That is until Christmas time. I woke up Christmas morning quite excited to start the day, my father in law was coming for Christmas dinner and since I was in hell writing three essays and studying for two exams at the time, doing the Christmas dinner was a very welcome distraction. I had a little pain down below and noticed a tiny little lump, I thought to myself 'great this is one of my spots starting, just what I need' and then pretty much forgot about it.

I got on with the dinner and we had a great day, I didn't think about the lump again till bedtime when it had become quite painful. Since it was Christmas day there wasn't really anything I could do about it anyway and I went to sleep only to be woken on boxing day in agony.

The lump was huge, really really huge. I figured it would go away like the others and its not like you can see a doctor on boxing day anyway, unless you go to the emergency department which seemed a little much, it was neither an accident or an emergency after all. So I left it and tried to get on with my essays and studying.

The next day I was in absolute agony, I literally couldn't sit down for more than maybe five minutes at a time. I gave in that evening and called NHS 24 who sent me to the local out of hours clinic at a nearby hospital where I had to wait over two hours to be seen.

Now I work in the NHS and I completely appreciate that wait times in an emergency or out of hours department are totally inevitable and I am not in any way complaining about my wait. However it was a dreadful experience as I simply couldn't sit down on the hard chairs, maybe they should consider getting more comfortable chairs in their waiting room.

I explained to the doctor that I thought I had HS, that my mother had it and I knew that there was a genetic component. I told her the brief version of the history of my 'spots' and she took a look at the one I had currently. She was shocked that I had managed to wait two days before being seen, she said it looked like an abscess and I must be in agony. She gave me a prescription and told me to see my regular doctor as an emergency case as soon as they reopened two days later. She couldn't give me a diagnosis as she was not my regular doctor but agreed with me that it was likely HS and I should ask my GP for a dermatology referral.

I turned out to be two weeks before I could see the doctor, of course by which time the lump had healed. She refused to send me to dermatology but told me that there was every chance it was the early stages of HS. She said there is really no treatment for the early stages other than antibiotics long term which I refused. I understand all to well about over exposure to antibiotics and I have already had far too many of them as a child. I also work in a hospital and often encounter people with C. Diff, the number one risk factor for C. Diff is recent antibiotic use.

We agreed instead that I would take a prescription for antibiotics and just keep them at home to take as I need them. Given my experience and my health care background she trusts that I know when to take them and when I have had too many. She will also monitor my requests for prescriptions and if it becomes too much she will then refer me to dermatology.

Then the question of diet came up. I explained to her about my problems with food although I am not sure I explained it very well. Maybe I should have taken a list with me of the things I can and cant eat, it might have made it easier for her. She was quite dismissive of it to be honest, although she didn't try to pressure me to change which was nice. I cant blame her I know that its not something the medical community understands but I have a problem and as my doctor it is her job to try and understand.

She printed me off some stuff about elimination diets, which I had already done years ago when my then doctor thought I could be lactose or gluten intolerant. I knew that I couldn't do most of the elimination diets, in fact the only one I had done successfully before was the lactose one. I tried to explain but was just told to try my best with them and come back with my results. I have never been back, there is not point because I cant do the eliminations they need me to do.

If I tried to eliminate dairy and gluten I would literally have nothing to eat.

It turns out that a lot of HS sufferers have had some success with eliminating dairy and gluten. They are not 'cured' as such but their flare ups are less often and less severe. some people also recommend turmeric as a cure for the inflammation, I don't know how I could incorporate that into my diet, or even if I could. Although I have heard that its available as a supplement, I will look on amazon later on.

So it turns out that my diet is probably affecting my health after all, and I have no idea what I can do about it. I simply cant cut out the things they want me to try to or I would have nothing to eat.


  1. Very interesting, never heard of that before. You can buy opti turmeric capsules from healthspan in the UK. They are supposed to be better absorbed by the body. I like turmeric. You can buy fresh root in a farmers' market. I grate that whole and use it in stirfry. (It will stain everything yellow!) You can also buy it powderedand add with flour to white sauce. It is not an overwhelming taste. You can buy it in those little spice bottles, if you just want to try it.

  2. I actually bought supplements which tasted horrible but I stuck with them for a while, I didn't find a massive benefit to be honest but, and I'm not trying to plug my business in anyway here - aloe vera has made a difference, I use our pure aloe gelly when I have an abcess and drink our drinking gels as well as using our avocado soap and it has made a difference. it doesn't seem to stop the lumps appearing, but they are smaller and not as sore and they seem to go away much quicker than before. We have actually just brought out a turmeric based supplement so I might give it another go. I do eat some indian food from time to time and they use a lot of turmeric but I have never cooked with it myself, I should probably try it though