Coming Out Of the HS Closet – My Hidradenitis Suppurativa Story

hs

I’ve never posted about hidradenitis suppurativa (HS) before, mainly because up until about this time last year, I didn’t even know what it was. All I knew was that, for the last 15 years, I’d been living with a condition that, although mild and manageable in the beginning, had grown into an impossible-to-control monster that was severely affecting not just my physical body, but my mental state, too.

That condition turned out to be HS, but it took a heady combination of doctor-hopping, door-banging, self-determination and good, old-fashioned luck, to finally arrive where I am today which, thankfully, is not standing on top of a cliff wondering how the hell I can carry on. Sounds dramatic, right? But I know of people who have done just that. And jumped.

If you’ve landed on this page, then chances are you’re researching HS, and if you’re researching it, then I’m guessing it’s because you’re not getting any answers from the very people who are supposed to be able to help you – ie: the medical profession. If you’re not a sufferer yourself, then you likely know somebody who is. The wider problem with that is, the majority of people with HS don’t even know they have it. I certainly didn’t.

So I’m going to share my own story of discovery, and what happened next, in an attempt to both demystify what is a frightening and soul-sapping condition, and offer some kind of hope to those of you who – I have no doubt whatsoever – are currently in the same dark place I once was.

So, what is Hidradenitis Suppurativa?

Officially (ie: in medical text books), HS is “a painful, long-term skin disease that causes abscesses and scarring on the skin. It’s not known exactly what causes hidradenitis suppurativa, but the disease is linked to inflamed sweat glands and plugging of the hair follicles” (NHS website).

There’s only one problem with this definition – most of it is wrong.

What is true, is that HS does present as painful blisters, lumps or lesions, usually in the armpits, the groin, genitals, buttocks and scalp – basically, anywhere hair grows, or there is skin-on-skin contact. So, in theory, it can occur anywhere on the body, but mainly as described above. HS affects way more women than men – around 80% more – but it doesn’t discriminate. These blisters and lesions often come to a head, get infected, and leak pus and blood. The pain is excruciating, especially when tract tunnels are formed beneath the skin, linking clusters of blisters together, which become impossible to treat effectively. HS is often misdiagnosed as folliculitis, blocked sebaceous glands, dermatitis, acne, ingrown hairs…and a whole host of other conditions. But HS is none of these things, not even close.

The traditional treatment for HS is a course of antibiotics and, in extreme circumstances, excision surgery of the affected tissue. But here’s the thing. HS is not a bacterial skin disease, it’s an autoimmune disease, and that’s why this treatment does not work.

A list of the main autoimmune diseases. HS is not on there. Why?

A list of the main autoimmune diseases. HS is not on there. Why? (Source: gurufitnessplanet.com)

Autoimmunity means that the body attacks itself. Other autoimmunity conditions include everything in the list above, and loads more – the list goes on and on. The reason that list is so long is because the paleolithic DNA in our bodies – the same DNA of our cave-dwelling ancestors – just is not designed to cope with the crap of modern day living or, specifically, the rubbish we insist on putting into our bodies. From processed foods to pharmaceuticals to E-numbers and additives, our bodies just don’t know how to handle it. We’re poisoning ourselves on a daily basis, yet we’re happy to cope with stuff like diarrhoea, migraines, stomach aches, bad skin and weight problems, by simply taking pills or drinking water. We don’t question why we suffer from these things, they just happen. Don’t they?

In the beginning…

First off, I have always been Miss Average, health-wise. Aside from the usual stuff women have to put up with, I’ve never really been ill. I’ve always considered myself strong, mentally, too, with a drive to succeed and an in-built desire to learn new things and better myself whenever I can. I never worried too much about my health, because I had no reason to.

So, when I found a small lump in my armpit around 15 years ago, which seemed to be growing over the month or so I’d become aware of it, I didn’t think too much of it but got it checked out anyway. Sure enough, I was told that it was a harmless cyst which would disappear on its own, which it duly did after around six weeks. Over the next year or so, these little lumps would crop up occasionally, but I never went back to the doctor, as they always disappeared in the same time frame – around 4-6 weeks. This would happen around two or three times a year.

After a few years, when I was about 30 (I’m 42 now), the lumps began to get more aggressive. One, again in my armpit, came to a head and became quite painful. I went to the doctor and was told it was likely a blocked hair follicle, caused by an ingrowing hair from shaving, which sounded plausible enough. I was given antibiotics and sent on my way. The lump did recede, and the infection zapped, but I could still feel it, like the root of it was still there, and I was convinced it was the same lump appearing over and over again, although the doctor disputed this when I went back to see him.

From molehills to mountains…

Over the next couple of years I began getting these flare-ups more often, perhaps once every eight weeks, and each time I went back to the doctor I was given more antibiotics (Flucloxacillin) plus, occasionally, Fucidin antibiotic cream. I never questioned the diagnosis, nor the treatment. Why would I? I’m not a doctor, and all I knew was that I had a painful lump/cyst and I wanted it to go away, that’s it. But no sooner had I popped the last pill, than the next lump/s would appear. It was neverending.

Then the lumps began appearing elsewhere, and they were angry as hell. Small, red pimples appearing around my bikini line and groin, manageable at first but becoming more painful and restrictive as time went on. I didn’t go to the doctor for a while – I was understandably embarrassed and self-conscious about the area the lumps were now appearing in.

I treated myself with antiseptic cream, stopped wearing tight jeans/trousers, made sure my pants were cotton and ‘breathable’ etc (sound familiar?) because I’d been led to believe that the lumps were bacterial in cause. Did that mean I was dirty, not washing properly? I knew that was rubbish – I showered or bathed every day, sometimes twice, which I later discovered was probably making things worse.

Nothing helped. Sometimes the lumps would recede slightly, but usually they’d come to a head and bleed. Think about it – it’s very hard to keep ‘that area’ away from contact. Every time I walked, every time I moved, the blisters would rub against one another and begin to weep. It wasn’t a broken arm I could just hang out of the way. The only solution was to not move – clearly impossible. It hurt like hell, and I had no idea what to do about it. Was I unclean? Was this my fault?

Liar, liar, pants on fire…

The internet back then wasn’t as all-consuming as it is now. I couldn’t Google a solution. Even though the site and nature of these blisters could have been indicative of an STD, the only certainty I had was that it was not an STD, because to have an STD you have to have sexual contact – and that’s the last thing you want to do when you have lumps on your bits, and I hadn’t let anyone near me in a very long time.

One of my doctors

One of my doctors

Eventually, I plucked up the courage to go back to the doctor. I had no choice. I was told the blisters were, again, blocked hair follicles and I should ‘stop shaving down there’. Well that wouldn’t be a problem, I replied, since I’d never shaved down there. Ever. I was an Immac girl, always had been. But the doctor was insistent to the point that he practically called me a liar. I was given yet more antibiotics and sent away like a naughty schoolgirl caught lying to the headmaster. Nothing was working, nobody could tell me what was happening to me and how I could stop it. I’d asked so many questions without ever hearing any answers. So I just stopped asking.

Banging head vs brick wall…

I never went back to that doctor. For the next ten years, I saw seven others.  Two of them began writing prescriptions for antibiotics as soon as I mentioned ‘groin’ and ‘blisters’. They didn’t even examine me. Two others did take the time to examine me and told me I had blocked sebaceous glands. One explanation for the cause was “it’s hormonal”, the other was “it’s just bad luck, some people get it, some don’t.” Neither verdict was particularly helpful.

A fifth doctor suggested I had ‘simple acne’ and it was just ‘unfortunate’ that it was affecting me on my lady bits. Unfortunate?? Wow. I could think of other words. Many of them. He put me on birth control pills to regulate my oestrogen, which was 100% a waste of time. I couldn’t even console myself with the knowledge that, hey, at least I didn’t have to worry about getting pregnant! Because to get pregnant you need to be having sex and I wasn’t having sex because…

Wine o’clock

pain

How alcohol helped

Even simple things, like turning over in bed, became agonising and, by 2012, normal life was pretty unbearable. I put on a lot of weight through comfort-eating, and I was drinking WAY too much, because alcohol was by far the most powerful anaesthetic for my pain. I’d always liked a drink – ask anyone – but now I had another ‘good’ reason to drink even more. I was trapped in a cycle of pain-alcohol -hangover-comfort food-pain-alcohol….  It seemed that, as long as I was drunk, I could function just a little bit, which was better than not functioning at all. Add to the mix my freelance quiz business crashing like a lorry into the side of a house, and the subsequent debts that came (and are still) with it – and life was definitely a challenge.

With little or no help from the medical profession, I had tried to accept that this was how my life was going to be. I was doomed to a life of singledom, simply because the thought of becoming intimate with anyone was anathema to me. Physical pain I could cope with, because I had vodka and wine to help me. But the emotional impact of what this horrible, horrible disease was doing to me, was something I just wasn’t prepared for. And I still didn’t have a name for it.

Withdrawal

I have always been an outgoing person, good at making friends, always up for a party or discovering new places, new experiences. But over time, I began withdrawing into myself. Although I maintained a strong inner confidence, never doubting my ability to achieve things, it was my physical confidence which began to erode. I became so self-conscious, desperate to hide the pain I was in, that I stopped doing things.

It wasn’t a sudden, overnight seclusion, far from it, but I was acutely aware that I was opting out of certain social situations, especially if it involved travelling, because I was reluctant to be anywhere I didn’t feel safe. Aside from a very few close (and local) friends, I hadn’t discussed my problem with anybody, not even my own family. I was tired of seeing doctors, tired of being made to feel I was either making this up, or exaggerating how much it was affecting me. And I was tired of being fobbed off with medication that simply wasn’t doing a blind thing for me. Even basic tasks like going to the toilet became big deals, adding to my reluctance to go anywhere I didn’t feel safe. Because that’s what HS does to you, it makes you feel unsafe.

The e-fightback

Then, after a particularly painful few months where I just couldn’t function like a normal human being, I decided to turn detective and find some real answers. As time had gone on, I’d regularly surfed the net as more information got out there, but I always felt like I was going around in circles. But I geared up for another mammoth session, determined to cut through the swathes of general websites and find something specific to me. I spent hundreds (seriously, hundreds) of surfing hours trying to match every minute symptom to something that had a name. The problem I had was that bleeding blisters and painful lumps are symptomatic of so many things, there were a myriad possible diagnoses.

google

Having decided that the only thing to do was to go through the medical dictionary in alphabetical order, I eventually arrived at ‘H’. I’d managed to discount everything from adult acne and bedbugs (!) to dermatitis and Graves Disease, but I was still none the wiser. But then I read about something called Hidradenitis Suppurativa, and a big, Battersea-sized light bulb went off in my head…

One step forward, three back

I didn’t go to sleep that night. I stayed up reading, my eyes wide with wonder, as I read page after page on HS. Every single symptom matched. I discovered forums, websites, even support groups dedicated to this little-known, poorly-understood condition that was causing misery to so many people. There were even reams of pictures of the lumps, bumps and blisters plaguing sufferers that looked exactly the same as my own. It wasn’t a Eureka moment of “hooray, I have hidradenitis suppurativa!”, more a case of “I am not alone!” because, for so long, I’d been convinced I was utterly, totally and unequivocally on my own. Finally there was a name for what I had. More than that, did that also mean there was a cure?

Sadly, much of the public information on ‘my’ disease did not make for optimistic reading. HS was, apparently, a skin disease with no known cause and so no known cure. Sufferers were stuck with it, and their only hope was to make it manageable, containable. But there was certainly nothing to do about it. The net was full of HS forums, yes, but nobody on there could tell me anything positive. Every single anecdotal story was about how hopeless this disease was, how depressing, how debilitating. Well, I knew that, and I certainly didn’t want to add to my misery. Posters were not sharing helpful tips and information, they were sharing stories of doom and despair. Once more, I felt myself falling into the abyss.

The Doctor I should have had

The Doctor I should have had

Still, I went to Doctor No.6 with renewed hope. This doctor examined me, but was already writing the antibiotic prescription before I could utter a word. She told me, unsurprisingly, that the blisters were blocked hair follicles…and I should stop shaving. I swear, I wanted to scream so loud, the frustration was overwhelming, almost Kafka-esque. She hadn’t even looked at my notes, at the many, many times I’d sat in that room with this problem. Wasn’t it obvious that antibiotics weren’t working?

And then I asked her about hidradenitis suppurativa. It was the worst thing I could have done. Instead of listening to me and at least considering the possibility, she just glared at me and asked “Are you a doctor?”. With four words, she completely shattered any remaining hope I had left. She refused to discuss it at all, even to dismiss it. In hindsight, I now realise this was because she didn’t know what HS was. I’d challenged her knowledge, or lack of it, and she was punishing me for her own ignorance. As I’ve since discovered, not many GPs do know about HS, which is why I’m convinced there are thousands of sufferers out there stuck on the merry go round of misdiagnosis – their doctors can’t diagnose something they don’t know about.

It’s another reason I’ve decided to ‘come out’ myself – because if I’d have known then what I know now, I could have saved myself a heap of misery and pain. I just have no room for embarrassment, self-consciousness or sensitivity any more. When you’ve had literally dozens of different people probing and staring at your bits (whose names I can’t even remember), you learn quickly what actually matters and what doesn’t. If this is uncomfortable reading for anybody, then be thankful, because that’s a luxury, it really is. It’s a cliche, but if just one person reads this and thinks “this is what’s happening to me, too…” and I can help them, then…

(Some) light at last

So, I then spent another six months living with pain which was increasing by the day. I was too scared/ashamed/disillusioned to go back to the doctor, especially as I’d exhausted seemingly every medical professional in my catchment area. Looking back, perhaps I should have been pushier, insisted on being listened to. But that’s another thing with HS, it totally saps your self-belief and it turns you into a shadow. Things you normally wouldn’t think twice about, you think twice about. You become so unsure of everything, even your own name at times, that you stop even trying.

Then I had some luck, at last. I noticed a new doctor’s name on the wall of my medical centre as I passed one day. There and then, I booked an appointment and was told I could go right in as she’d had a cancellation (I know, what are the chances!). Was it a sign? I didn’t care, I was in, and this time I was determined not to leave without at least having a discussion about HS.

After she examined me, I took a breath and prepared to ask the question…. whereupon Doctor No.7 simply said “I think it’s something called hidradenitis suppurativa…”. Seriously, I could have kissed her.

Annus horribilis

Finally, I had a diagnosis, I had someone who believed me. I had hope. Unfortunately, however, the correct diagnosis didn’t necessarily mean I was going to be cured – because everything I’d read was telling me there was no cure. But surely something could be done? And so began a year of false hope, more drugs, and a degree of pain I didn’t even know existed.

I was referred to a consultant dermatologist at Broadgreen Hospital in Liverpool where, after a 10-week wait for an appointment, I was told that, as I’d feared, hidradenitis suppurativa was an incurable, bacterial skin condition that had just two treatment options – long term antibiotics and/or surgery to remove the affected tissue.

I told the dermatologist that antibiotics did not work for me and I was at the end of my rope. Once more, I was back in Groundhog Day. He told me that the drugs he wanted to put me on were ‘different’, and they needed ‘time to work’. But time was the one thing I didn’t have. I didn’t think I could go another hour with this thing, never mind the three-to-six months he was talking about. But he persuaded me to go onto a course of Trimethoprim, in lieu of an appointment with ‘the best plastic surgeon around’. Surgery?!  Wow, are we really at that stage, now? Apparently, we were. The theory – remove the affected tissue/glands/follicles, and the HS disappears.

It was drastic, but I was so desperate, I was willing to try anything. I began the Trimethoprim, which took three months to even have the slightest effect – clearing up infection but doing nothing to the actual blisters themselves. I then saw the rock star plastic surgeon who, understandably perhaps, wasn’t too bothered about why I needed surgery, he just wanted to do his thing.

I was booked in for June 2014, ten hard months after my diagnosis. Inevitably, the operation was cancelled at the eleventh hour and they tagged another two weeks on. There’s no point detailing the ins and outs – Google “HS surgery images” at your peril –  suffice to say that, afterwards, I looked like I’d had a close call with Jack the Ripper. Recovery was tentative, movement almost impossible. The best analogy I can offer is to imagine your pants have been filled with razor blades…for two weeks. When the stitches came out, though, it was a miracle. For seven days, anyway. For a whole week, I had no pain, and almost free, flexible movement. Most importantly, I had my life back. Running for a bus was actually one of the single, most pleasurable things I have ever done. I was cured! Hurrah!

Then, on Day 8, a new blister appeared, right on the cusp of the scar tissue. I was back to the beginning. I was creeping towards the edge of that cliff once more. This time, though, I really wanted to jump. I’d had enough.

Rinse and repeat

Nearly but not quite

Nearly but not quite

I was due for a post-op appointment at around the same time as the new blister appeared. By the time I got into the consulting room, one blister had become four – that’s how quickly HS can erupt. The surgeon took a look and immediately prescribed another course of Trimethoprim while another surgery was scheduled. His reasoning: “we just didn’t get it all, but we will next time”. I believed him. I thought that it was an unfortunate case of just not excising enough of the affected tissue. The antibiotics had, apparently, reduced ‘some’ of the tissue, to the point where the surgeon just didn’t see it when he operated. Next time, though, he would excise a wider area “to ensure we get everything”. Great, so you’re going to butcher even more of me, ‘down there’? Well it’s just as well George Clooney was  about to get married, because he sure as hell wasn’t going to be knocking on my door any time soon.

So, it was more months of ineffective antibiotics, which may as well have been Smarties for all the good they did. I was drinking even more (if that was possible), and staying in even more, and generally just thinking the world was over (yes, there was a LOT of self-pity). The next operation was also postponed, but I eventually got in for Round 2 in early November, five months after the first op. This time it was more intense, and the pain was beyond ridiculous. Razor blade pants, with added salt. Maximum morphine and a paracetamol drip didn’t even touch me. Recovery was slower, or so it felt, but again I had a small period of bliss after the stitches eventually came out. I went past the golden 7-day period and still no sign of a flare-up.

That happened on Day 13. Basically, every area of my groin that hadn’t been chopped up, suddenly had a nasty, angry blister on it. HS wasn’t just targeting me, it was killing me not-very-softly-at-all. This should have tipped me over the edge. I’d had enough, no more, just no more. But, just as I’d happened across Wonder Doctor No.7, so I happened across something else at just the right time.

Tara Grant aka The Angel of HS

Tara Grant aka The Angel of HS

Happily (as bizarre as the word seems), as I’d approached the second operation, I’d continued to research HS, unconvinced that surgery was going to help me (my natural pessimism was, it turned out, a good thing for once). That’s when I came across, by accident, a website called PrimalGirl.com. Now, I am not religious in any way, shape or form, but that was the moment I discovered the closest thing to an angel I am ever likely to know. Her name was Tara Grant.

Clarity

An HS sufferer for over 20 years, Grant had had enough of the same brick walls, the same indifference from the medical profession and, most of all, the same misinformation being disseminated by those same ‘professionals’ concerning the causes and (lack of) cures for HS. She knew, as well as most of us did, that the prescribed treatment just didn’t work and, if it didn’t work, then the most likely reason was because the treatment didn’t fit the cause. Tara Grant decided that, if nobody was going to give her the answers she needed, then she’d find her own.

She conducted her own exhaustive research into the true causes of HS, the symptomatic correlation between HS and other conditions, the effect of HS on sufferers and those close to them, searching for anything that might offer some hope. After numerous scientific studies, expert analyses, multiple convention-attendances and good old badgering and banging on doors, Tara Grant discovered the answers she was looking for, and changed her life forever. More than that, she wrote a book on how she ‘cured’ herself.

Grant’s website was full of invaluable information and anecdotal accounts from fellow HS sufferers. More than than, she’d turned the standard, accepted understanding of HS entirely on its head. Hidradenitis suppurativa was not, as traditionally thought, a bacterial skin disease. It was an autoimmune disease. And, as is the case with many autoimmune diseases, the cause (and cure) was down to a leaky gut. What?!

Grant’s research had concluded that the painful lesions symptomatic of HS were the result, in part, of toxins entering the bloodstream through holes in the gut. Seemingly innocuous foods like potatoes and tomatoes, as well as predictably harmful stuff like processed, convenience foods, all contain certain chemicals – natural or otherwise – which are usually filtered out by our body during digestion. But if our gut is leaky, then those toxins are able to enter our bloodstream before they get zapped, and that’s when all the nastiness starts.

Once white blood cells – our body’s defence system – detect these toxins, they go into overdrive and attack, only to find that they don’t recognise the ‘invaders’ (because they’ve entered the blood through the ‘Trojan horse’ of the leaky gut) and end up overproducing until there are so many white blood cells in attendance, the army turns on itself and attacks its own soldiers. The result can be anything from an irritable bowel, stomach cramp or a headache, to more severe diseases like dermatitis, multiple sclerosis and, of course, HS. So, Grant surmised, if the holes in the gut can be repaired, the body’s immune system will function normally and the symptoms of HS (and other autoimmunity conditions) will disappear.

This is a very simplified explanation of what autoimmunity is, and there are hundreds of autoimmune diseases out there, from IBS and Lichen planus, to alopecia and, as mentioned, multiple sclerosis. The symptoms of all these conditions vary wildly, but the root cause is the same – leaky gut.

Reading all this was life-changing, not least because it was so logical. This wasn’t rocket science, this was anatomical, pathological common sense. So why didn’t the doctors know this? And if they did, why weren’t they telling us? Well, the pharmaceutical industry is a very powerful beast. I’m not saying that they want us to be sick, but if there was a cure for half the world’s maladies, then how would they make their money? It’s like Apple. You know they have the iPhone 234 ready and waiting to roll out, but they’re not going to do that until you’ve bought the other 233 versions.

book

I discovered Tara Grant just as I was about to go under the knife for operation number two, so I went ahead, obviously, but only because I didn’t at that time have enough information to say no. But needless to say, I was desperate to get a hold of Grant’s book – The Hidden Plague. It arrived on the same day I was due to go home after a fortnight’s recuperation at my parents’ house (and before I flared up again). I don’t remember the next few hours, because I was just lost in those pages from the very first word. Every single line, every anecdote, every description, it was like reading my own life story. At last, at last, someone else knew what I was going through, down to the very last tear.

It would take too long to precis here everything in Grant’s book, and certainly anything you read on these pages is no substitute for what has become my survival bible. But I will list the salient points, if only to impress just how vital the information contained in that book is to any sufferer of HS.

1. HS is an autoimmune disease caused by leaky gut.

HS is not a bacterial skin disease. It is not bacterial, full stop. It is not contagious, you cannot catch it or pass it on. Your gut is leaking, poison is entering your blood stream, your antibodies cannot fight it so they fight themselves instead, and this is what is giving you those horrible blisters.

2. Antibiotics will do nothing to help your HS.

They might clear an infection in a vulnerable blister, but they will not stop those blisters appearing. If anything, antibiotics make HS worse. Because our guts rely on probiotics to stay healthy, it doesn’t make sense to ingest antibiotics – by their very definition. I am convinced that years of ingesting antibiotics has actually exacerbated my HS by killing the very probiotics I needed to keep my gut healthy.

3. Surgery will only ever deal with the affected tissue at that time.

Cutting out tract tunnels will remove the blisters you have that day. It will not prevent others appearing. More than that, surgery leaves you open to infection, which requires post-op antibiotics to prevent this happening. And we know what antibiotics do to your gut…

4. An Elimination Diet can identify your food trigger and stop your leaky gut. 

Leaky gut is caused by toxins present in many, many foods, both natural and processed. To cure leaky gut (and cure your HS/other autoimmunity disease), you need to identify which food/s are triggering your own attacks. Everyone is different. In some people it’s potatoes, in others, red peppers. “The Hidden Plague” offers a step-by-step blueprint on how to embark on an elimination diet, which foods are ‘safe’, and how to start reintroducing foods one by one, so you can easily identify which ones are hurting you.

5. Sugar is evil, period.

Insulin imbalance is a major cause of AI (autoimmune) diseases. You might think only diabetics have to worry about insulin. Wrong. We all do. Regulating your sugar levels is vital to maintaining a healthy gut. And that means all sugar, including the natural stuff in fresh fruit, vegetables and even milk. Yes, too many oranges can actually hurt your gut. Again, “The Hidden Plague” details the role of sugar in HS and autoimmunity, in great depth.

6. HS springs from a ‘Holy Trinity’ of factors

In addition to diet, Grant tells us that hormonal imbalances and genetics (a family history of any AI condition, not necessarily HS) are the three major issues which cause hidradenitis suppurativa. Add to your leaky gut the unlucky genes and hormones which aren’t doing their job properly, and you’re a prime candidate for HS.

7. If your doctor isn’t listening to you, find another one.

No-one knows your body better than you do. You don’t have to be an MD to know when something’s wrong. More importantly, never accept a diagnosis that doesn’t make sense to you. It’s your right to ask questions, so ask them, as many times as you need to. I wish I had.

8. Never give  up hope

Easier said than done but I’m speaking from bitter experience. I’ve done the years of meds, I’ve done the surgeries, I’ve done the pain, and then some. And I still think I can beat this. That’s what these pages will be about over the coming weeks and months, so if you’re in the same boat, stay with me and we’ll see what happens as we go.

So, in summary, after my post-op flare up, I went back to my surgeon who, amazingly, proposed more surgery (I do have to mention, however, that he was a rock star, and now, two months after the second op, it’s hard to actually see where he’s been – the scarring is minimal). I asked him how many HS patients he was treating, but all he would tell me was that the number was “increasing”. Well of course it’s increasing. Surgery is a last resort, and that’s because all other treatments fail. They fail because they’re the wrong treatments.

I declined more surgery. I said no to antibiotics. No more. Just no more. I’ve had enough. And I’m angry. Angry that for years I have been taking drugs which were hurting me. Angry that the woeful lack of HS knowledge in the medical profession actually caused the need for surgery in the first place. Angry that other sufferers are being herded into operating theatres that they should be running far, far away from. Angry that nobody seems to care about redefining HS as the autoimmune disease it is. Angry that I have wasted arguably my best years – certainly my childbearing ones – retreating into myself when I could (and should) have been enjoying relationships, having fun, just dating, even.

A part of me feels robbed, but another (perhaps larger) part of me is angrier with myself for not being bolshier, for not questioning what people were telling me. I trusted the medical professionals to give me the best of their knowledge, and they failed me. I won’t lie, there is a lot of resentment inside me right now, but I don’t have time to deal with that. HS has taken too much from me, it won’t take any more. The next step for me, is healing, and that’s what I choose to concentrate on.

I still have an awful lot of reading to do before the first step in that healing process – the Autoimmune Protocol (AIP) 60-day Elimination Diet. The idea is that I remove all known potential HS triggers from my diet for 60 days, then begin reintroducing foods one by one until I discover my own trigger.

paleo

Here, I’ll be documenting my attempts to identify my own food triggers, as well as any other discoveries along the way. The AIP adheres to the mantras of the Paleo Diet, which you may also know as the Caveman or Ancestral/Primal Diet.

It’s a simple premise – by eating only those foods our ancestors ate, the foods our DNA is programmed to accept and process, we can heal not just leaky gut, but a myriad other conditions connected to modern diets. Stuff like heart disease and autoimmunity didn’t exist until relatively recently, and that’s because we have changed the way we eat to such an extent, our bodies no longer know what to do with the rubbish we’re putting into it.

The changes to my lifestyle over the coming months are going to be drastic. They have to be, otherwise there’s no point even doing this. I won’t get ‘treat days’, or even be able to have milk in my coffee. Hell, I can’t even have coffee. The list of banned foods is longer than an ITV ad break, and I will need to learn to cook. From scratch. No grains, no legumes, no dairy, no alcohol, no gluten, wheat, seeds, tomatoes, potatoes, aubergines, nuts, ham, honey, eggs, oats, pasta, rice, yeast, corn…plus a thousand other things, there’s just nothing (at least, that’s how it feels)!

But during those 60 days, two things should happen. Firstly, my HS symptoms should significantly recede or even disappear completely. Secondly, I should lose a shedload of weight. Win-win, right?

After the 60 days of having no life whatsoever (kidding…ish) have elapsed, I can then start reintroducing foods at the rate of one per week, to identify which one (or more) has it in for me. This process could take months. To me, because I’ve had HS for so long in one permanent flare-up, it makes sense that my trigger food is something I consume often. The first thing I’ll reintroduce, then, is alcohol, and pray that this isn’t the enemy. If I can get past that, then I don’t really care what the trigger turns out to be. Even my beloved cheese. Just don’t take away my Pinot Grigio.

So, I am just praying that my HS remains stable-ish for the next two weeks until Day 1 begins. But if it means saying goodbye to this accursed disease for good, then bring it on. I am ready. And I’m going to kick its ass.

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16 responses to “Coming Out Of the HS Closet – My Hidradenitis Suppurativa Story

  1. Keep fighting Sarah. You are truly a wonderful person.

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  2. Omaria48@yahoo.com

    Hi Sarah I’ve just read your blog and wanted to congratulate you for your brave honesty ! I had no idea about your health problems, and can’t imagine the hell you’ve been through with it. I will come out next week to drink and be merry and then follow your progress with every thing crossed in the hope you can identify your triggers. Very well done Sarah. Much love Maria xxx

    Sent from my iPhone

    >

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  3. Good luck with the regime, and well done for the detective work, and for your honesty in writing about it so lucidly. I really hope you can isolate what’s causing the problem (and keeping my fingers crossed for you that it’s not alcohol or cheese!)

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  4. Great read, but bad effin news when you can’t just fix what’s wrong with the high up high Aspirin or something else… Those Quacks are crap, they’re like Politicians now most of them – go into not to fix people but cos the dosh is good. Well done for taking control – eventually.

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  5. Aplos for writing too quick, but at least its just me fixing this, and its not taking 7 or 8 of us. Doctors – pah! I don’t go to them, they will come to me.

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  6. This is like the best read ever! You totally described what has been my ongoing, never ending, frustrating five year battle with HS. Thank you for the inspiration and knowing there is possible light at the end of this at tunnel that we know as HS. I often pray that I wish I could have my normal, worry free pre-HS life back. Then reality hits me with the thought that those days are long gone. This disease is debilitating, stressful, embarrassing and down right tedious to maintain an inkling of normalcy.

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    • Thanks Ria, it’s good to know that sharing my own experience might help someone else’s. There IS light, it’s about finding what your own body reacts to because I don’t know of any 2 HS sufferers with similar reactions to the same treatment.
      It’s been a year since I finished the 60-day elimination diet and the only definite answer I have is that I have no dietary triggers. If I binge on rubbish food or have a heavy night out on the wine (!) then I may flare a tiny bit, but otherwise a sensible diet is fine.

      My own personal ‘cure’ seems to be a combination of daily supplements plus regular turmeric root tea (recipe is on this blog also).

      The supplements, which DEFINITELY work for me (I flare if I miss more than 2 days), are: 100mg zinc, 500mg magnesium, Vit D3 capsule (10,000 UI), 1 x probiotic (5 billion), 1000mg glucosamine sulphate, 3000mg omega 3 oil.

      I think the zinc and magnesium are the two most important – HS sufferers are proven to be deficient in both, so put these to the top of your shopping list.

      AVOID pharmaceutical anti-inflammatory drugs (naproxen etc) – the turmeric tea is the only natural anti-inflammatory you should need.

      The only chemical treatment I use is the FUCIDIN antibiotic cream (brand name, may be called something else where you are) which I find helps enormously with flare-ups, applied topically to the blisters. It really does help clear them up.

      I’ve had a couple of minor flares in the last 12 months, but nothing remotely like I was getting daily. Sometimes, I even forget what having HS was like…THAT’s how far I’ve come in a relatively short space of time.

      So my advice to you – sensible diet, lots of turmeric tea plus those daily supplements I list and you should hopefully begin to notice a change pretty quickly.

      Best of luck, and let me know how you get on.

      PS. Don’t let doctors bully you into just taking anti-inflammatories or antibiotics for your HS. They will make you worse in the long run. Treating HS is about prevention, not just treating symptoms. Doctors do not know everything and you know your body better than anyone. It’s OK to question what they tell you.

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  7. Hey girl! My husband has HS and I’ve been diligently trying to help him overcome this disease for the past year. Right now all of my time, resources and energy is devoted to helping him. It has been awful to see what this disease can do to a person. He is going on week 6 of the elimination diet. I am so glad that I found your blog, definitely following and creating my own blog to help others our there. I research this disease day and night sometimes I just sit and cry when I read all of the posts of people searching for answers.

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  8. Christine McLennan

    My daughter has suffered HS for over 10 years and have just read Tara’s book and been on the elimination diet for just over a week. Like you I feel she is an angel-everything makes sense now. Already the callouses on the soles of her feet have softened and hair growth in certain areas has slowed, which means her Testosterone levels must have already started to lower, so I feel very positive. I find it hard to keep energy up though-what snacks do you have to keep you going between meals?-we find a tspn coconut oil in the morning helps but besides Spearmint tea and water, we average a pear and a kiwifruit or banana and a glass of coconut milk each day (sometimes a few sw. potato chips) but still tired and quite hungry. Also do you use organic fruit and veg? as they are so expensive. Thanks Sarah,
    Christine.

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    • Hi Christine,

      Sorry to hear your daughter suffers with HS, it must be very difficult to watch her go through this and not be able to wave that maternal magic wand and make it go away. There is a lot you/she can do, though.

      As you’ve mentioned, Tara’s book is wonderful and really opened my eyes both to just how little the “professionals” know about HS, and also how much sufferers can do to help themselves.

      The elimination diet was very difficult in the early stages, because my body was used to ingesting lovely carbs and hidden sugars, so my stomach had to shrink and not expect all these treats. I did find it very difficult to feel full, but I found it was more about when I ate than what I ate. Breakfast was always a large bowl of fruit salad (the fruits I was allowed, anyway) and I drank as much turmeric tea throughout the day as my bladder could handle. Hydration, hydration, hydration was the key for me because, often, we mistake hunger for dehydration. It’s not food we crave, it’s water.

      For lunch, I would have something like cauliflower tortillas (which I’d batch bake then freeze). I’d use these for snacks, too, like sweet potato chips/crisps (as you mention). If I still felt snacky, then I’d have a tin (or two) of tuna (in spring water, not oil or brine). Actually, I ate quite a lot of tuna as it was so quick, easy and, most importantly, meaty and filling. I also used to make meatballs with grass-fed meat. These made perfect, filling snacks and I always kept a tub of them in the fridge to nibble on through the week. I’d make them on Sundays and they’d last a fair few days, as would cooked chicken breast (again, grass-fed). I’d just graze on both of these and I wouldn’t be hungry. Sometimes I wouldn’t need a main meal in the evening as I’d been snacking on chicken and meatballs all day! The thing to remember with an elimination diet is, it’s not a calorie-controlled diet. Forget the calories and just eat as much as you need to, to feel full. The foods you’re allowed are generally low fat anyway, so if you’re hungry, eat, it doesn’t matter when or how much. For dinner I’d have fresh salmon or a lovely big bowl of spicy chicken stew. Again, I’d batch cook so I had my meals prepared for the week and thus avoid temptation (nothing worse than getting home from work, tired, and thinking “I don’t have anything to eat” – that’s going to send you straight to the biscuit barrel…).

      The only downside of the meat thing was that the only way to guarantee the meat did not contain any crap was to buy it from a certified grass-fed supplier, which was a pain. In fact, MOST of what was in a supermarket was off-limits. The only reputable truly-organic butcher I could find was online, at http://www.athleat.co.uk which you’d think would be more expensive but, if you buy in bulk and make the most of the single expensive postage charge, then it was on a par with supermarkets AND the meat itself is noticeably much better quality. For instance, I bought some chicken fillets which worked out around £2 each and they were HUGE! No excess water, either, every inch of plump meat was exactly that, 100% meat. I still buy from them today and can’t remember the last time I bought meat from a supermarket or even high street butcher.

      Which brings us to the organic question itself. Like most people, I assumed that anything in a supermarket labeled “organic” was pure, free from additives, preservatives etc, and that the fruit was free from chemical spraying and all that malarkey. In reality, the organic food industry is fundamentally flawed and, if I was being super-cynical, deliberately misleading. There’s more information in the bottom half of another blog post, here but, in short, fruit and veg can still be treated with fertilisers and chemicals and be called “organic”, as long as the amount of chemicals used is less than ‘standard’ treated fruit and veg. A scandal, right?

      Similarly with meat, buying “organic” chicken, beef, whatever, makes the consumer think they’re eating naturally produced meat with no chemical interference, but this isn’t true. Again, something like chicken breasts can be marketed as organic even if that chicken has been battery-farmed or chemically-fed….just as long as the level of chemical feed is less than ‘standard’ feed, or the cage has a little more room than a ‘standard’ cage. So don’t be fooled by supermarkets which label their meat organic. This does not necessarily mean the cow has been grass-fed or the chicken is free range or seed-fed. In the UK, “organic” simply means “less chemicals than standard”. You pay so much more for it but it is absolutely not better for you. It’s an absolute scandal and consumers are wasting so much money thinking they are buying pure produce, when it’s anything but.

      There’s quite a lot of information online about the great organic con, such as this article here, but what I’d advise in order to guarantee that no crap enters your daughter’s system, is to buy meat from Athleat or a local farm shop. Supermarket fruit and veg, as long as you wash everything thoroughly, should be fine (again, ignore the “organic” rubbish, you’re throwing your money away). I actually buy frozen fruit quite a bit, or tinned fruit in juice (never syrup). Usually, fruit and veg which has been frozen at source is much purer than the stuff you hand-pick in the supermarket anyway.

      Coconut oil was a godsend, although I did tire of everything tasting of coconut after a while! I found the best use for it as a moisturiser. Diet isn’t the only important thing to control during an elimination diet, but things like the make-up you wear, the cleansers you use etc, it’s all chemicals going into your body which can affect your immune system. Coconut oil as a cleanser and moisturiser is something I still use today.

      Here’s a post about how I found the whole ‘experience’ of the ED and hopefully you’ve been able to read on from the first post and see the whole journey which I detailed weekly, plus the reintroduction phase. Today, I have gone back to some bad habits (inevitable) but my HS is under control. I think this is down to a mix of having a better diet (I never did identify a definite food trigger, just learned to drastically cut out the processed stuff and sugar), zinc + magnesium supplements and Vitamin D3. I still get threats of flare-ups around my periods, so hormones definitely have an impact. I guess it’s balancing everything at a level that’s right for you.

      Elimination Diet – Conclusions

      I hope some of this is of help and if you or your daughter have any other questions along the way, do get back in touch, any time. Best of luck – she’s done the hard bit!

      Sarah.

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  9. Christine McLennan

    Thank you so much Sarah, you are wonderful (and very funny), these are some great tips and advise, and I have looked at your other posts now, which are also very helpful. I did not mention, that my daughter, Nicki, has Down Syndrome so I’m actually doing the diet with her (she’s coping better than me) so we really appreciate your help. I have been unable to find HS/ancestral diet Forums for queries so if you can recommend one I would really appreciate it also. I don’t know whether Magnesium should be chelate, malate or bis-glycinate etc. I know it has to be sugar, salt, starch, yeast, gluten, dairy, corn, soy, wheat and egg free – any recommendations? Also we are in Australia (regional area) so fortunately have good access to local/free range grass fed meats, but the fruit and veg is debatable as you say.
    Thank you so much Sarah,
    Christine 🙂

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    • Re. the magnesium, I only began to take this after the elimination diet as I didn’t want anything interfering. I know what you mean about all the various incarnations of magnesium (and zinc et al), but the most important thing is how much elemental magnesium is in there. The ones I take are Magnesium Oxide 500mg, which contain 300mg of actual magnesium. I take two a day in the morning and they really do help with the rest of the day. For a good HS forum, try joining the Facebook group. It’s not a public forum so just apply to join with a little about you and Nicki and they’ll welcome you with open arms. A very valuable sharing resource and Tara herself goes on quite frequently. It’s helped me a lot. Here’s the link: https://www.facebook.com/groups/hsandglutenfree/

      Good luck again and do let me know how you go!
      Sarah.

      Like

  10. Christine McLennan

    That’s great Sarah, you are a wealth of information, I’ll join the group and will definitely let you know how we go.
    Thank you so much,
    Christine.

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  11. Sarah,

    I have experienced the exact same brick walls that you. Being told that hair follicles blocked sweat, having low hygiene and being prescribed antibiotics again and again. I have even undergone surgery many times. The pain is extremely unbearable and hinders regular life. I could relate to every point you said.

    Fortunately, I was diagnosed with HS by the second doctor I visited. Three years of my research led me to get to the understanding that leaky gut is the root cause. I have never before eaten probiotic foods in my like because of taste aversion and have been inclined to eat sugary and spicy foods with alcohol binging. I have now started probiotics and am fighting with myself to completely avoid sugar.

    It is great to have my research validated. More power to you and hope you heal soon.

    Mohit

    Like

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