Warning: This post is graphic and candid. If you are embarrassed by frank, honest discussions of human sexuality and the human body, then this post probably isn’t for you. If you want to learn more about a disease that is connected to Metabolic Syndrome, PCOS, Crohn’s Disease and Insulin Resistance but is rarely talked about, then read on.
This will be a two-part post. In Part One, I will be dealing with what Hidradenitis Suppurativa (HS) is and giving you some background into the disease and the psyche of its sufferers, as well as my story. In Part Two, I will discuss how I got my HS to go into remission. That’s right. My HS symptoms are gone. I have found out what triggers it in me and how to avoid flare-ups. The process is lengthy and requires some sacrifice, but if you suffer from HS I know you are willing to do ANYTHING to get rid of it. However, I encourage you to continue reading. Even if you don’t have this condition, I guarantee you know someone who does. Having some background into the disease can make all the difference in helping someone you love, since they probably won’t tell you how much they are suffering.
I’ve had a condition called Hidradenitis Suppurativa since right after puberty. I didn’t know what it was called for over 15 years and couldn’t find a doctor that even knew what it was until I did considerable research, found the name and told them what it was (my typical experience at the doctors, sadly enough.). I didn’t know anyone else that had it and was too embarrassed to “come out.” I felt alone and isolated. In order to find someone else with the condition, I first had to admit to them that I had it too. The disease caused me considerable pain – both physical and emotional. It damaged my self-esteem while I was growing up and limited the activities I was able to do. It has left me with scars. While the physical scars have faded and disappeared since going Primal, the emotional ones will always be there.
Having a skin condition that looks like herpes on crack in your private areas – your groin, pubic area, buttocks, under your arms or breasts or anywhere where there are hair follicles (so potentially your entire frackin’ body, really) – will definitely affect how you interact with other people. Imagine a girl just going through puberty, with all the stress and problems that puberty normally entails, and then add that frightening skin condition. Imagine going to a doctor to ask what it is and being told that it’s caused by bacteria and the ensuing shame that comes from being told “you aren’t doing a good enough job of cleaning yourself. Down there.” Imagine being told they don’t know what is wrong with you and that they don’t have a solution or treatment. Imagine that you are that girl and your friends are having a pool party. You really want to go but you are afraid that your bathing suit might ride up in the back and someone might see. You don’t go to that party, do you? You don’t change in the locker room either. You don’t go to sleepovers. You are afraid of being intimate. You think that people will think you are diseased, infected, contagious, damaged. Imagine the fragile self-esteem of a teenager who is afraid to reach out for help and who feels isolated and alone. I imagine this is how some gay teenagers must feel. It’s hard having a secret.
This was me. I am lucky that I had parents who constantly built me up in other ways, or God knows how I may have turned out. I’m also lucky I wasn’t raised in a strict religious family, or I may have thought this disease was inflicted upon me by God. After all, doesn’t God give people boils from time to time, for some sin or another? I’m also lucky I didn’t develop OCD about keeping myself clean. I didn’t even tell my supportive, loving family about my disease until I was in my 30s. It turns out they couldn’t have helped with the condition at the time anyway – the doctors couldn’t help. No one knows what causes this disease. No one in Western medicine has a clue. It wasn’t until I went Primal that I noticed an improvement in my condition and it took almost 3 years to fully understand what triggered the outbreaks and to completely avoid them. All the doctors I saw over the years didn’t understand the autoimmune response that HS seems to be. No one ever suggested perhaps it was something I was eating that was causing the outbreaks.
If you want to jump right to pictures, visit DermNet. Please be warned that the pictures are graphic and might contain the occasional penis, vagina, nipple or buttock. After all, these are the areas that are affected most often.
There’s a reason I needed to warn you before you looked at those pictures. They’re fairly horrific. The HS-USA website describes Hidradenitis Suppurativa as follows:
“Hidradenitis Suppurativa (HS), also known as ‘Acne Inversa’, is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact – armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration — hence the name) involving significant scarring.
Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These ‘flare-ups’ are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.
Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.
HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.
Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million – potentially up to 12 million – Hidradenitis Suppurativa sufferers in the United States alone!”
If you don’t have this condition, thank whatever Gods you pray to. Then take a look around. I bet you know at least five – if not more – people that have this disease. I am the only person I know that is willing to talk about it, but once I opened up to a couple of friends, they told me that they had it too! They just didn’t know what it was called, what was causing it or how to get rid of it. My doctor referred me to a dermatologist, who told me there was no cure: “This is a life-long condition that you will have to live with. There is no cure. The only treatment that has been shown to be effective in any way is a daily course of antibiotics. You will, of course, have to take them every day for the rest of your life. Until menopause, anyway. The disease usually ‘burns itself out’ at menopause.” Well, that’s great news for women – perhaps we get a small respite from an incredibly horrible lifetime of pain later on in life, but what about the men? I haven’t read or heard anything else about HS “burning itself out” later in life in any books I’ve read, or even on the forums – just the occasion post-menopausal woman who seems to have the “situation under control.” There are all kinds of crazy theories and medieval-like home remedies out there on the Interwebs for HS (I tried them all), none of which work, some of which are downright dangerous. I’ll deal with these theories in my follow-up post.
Right after I got my period at age 13, I started getting little pimples and bumps on my buttocks. They were very embarrassing, but I could clearly tell what they were and I wasn’t sexually active at all, so I knew I didn’t have an STD. I didn’t tell anyone about it, except for my best friend at the time. She also admitted that she got pimples on her bum too, so I thought that it was something fairly normal. About 2 years later I started getting the pimples in my groin area, except that they were more like boils than pimples. The ones on my bum changed too, they were bigger and much more painful. The boils would “erupt” and pus would come out, just like a pimple, except that blood would come out too. They would take weeks to come to a head and months to go away and eventually heal. It was fairly common for another boil to pop up in the same place before the previous one had even finished healing. Of course, they scarred. Badly. If the boil didn’t erupt, it would still take months to go away and would leave a dark spot. (On me, these eventually fade away – but it takes anywhere between 3 months to a year. If you are dark-skinned or scar very easily, you may carry the marks of HS for life.) Strangely, I have never had a single problem with my underarm area. This is usually the most common place for HS to occur but I’ve never had so much as an ingrown hair there.
I went to my doctor and she told me I was suffering from adult acne. Ha! She obviously didn’t have a clue. I didn’t mention it again to another doctor until I was about 30. I went in for my annual exam every year and no doctor ever said, “OMG, what is that?!” so I figured I didn’t have a reason to panic. I had a couple other girlfriends who had complained about boils in their groin area, so I still thought it was fairly normal. They went to their doctor, were given antibiotics and the boil cleared itself up. It’s been decades and I haven’t checked in with these friends to see if they had any more boils pop up over the years. I bet they did.
Over the years, my weight gain increased, as did my depression and other symptoms – including allergies and hair loss – and the HS got worse. I usually had about 3 boils at any given time. I started doing research and found a theory that tied HS to excessive sweating and bacteria. Since I was overweight, I did sweat more than the average person. I decided to shave off my pubic hair (against all the popular advice) to see if that would help and it actually did – I stopped getting flare ups in my groin but then got them worse on my behind. I also had a horrible problem with ingrown hairs, something I had never experienced before. I tried every remedy and cream on the market and nothing helped.
I now suspect that my ingrown hairs were caused by inflammation. Once I had my insulin and inflammation under control, I no longer got ingrown hairs. A short side note: I will also get ingrown hairs/breakouts in my nose if I eat something inflammatory, they are probably the most painful thing I’ve ever experienced. They are the first sign my body gives me to tell me I’m experiencing inflammation. The next is acne, canker sores and achy joints. At the time, I was also breaking out with cystic acne on my face. The pimples were almost identical to the ones on my bum and would take over a month to resolve. The dermatologist told me that you “can’t get HS on your face.” End of story – for her. It wasn’t for me. When I got my HS under control, the ingrown hairs AND the acne also went away. In my experience doctors like to compartmentalize problems – there’s no way that anything could possibly be connected. It is this mentality that slowed my recovery by over a decade. If a single doctor had just taken a look at the bigger picture instead of trying to treat everything individually, I may have been cured years ago.
Now that you have some background into what Hidradenitis Suppurativa is and the psyche of it’s sufferers, subscribe to this blog to learn how I got my HS to go into remission. I’ll be posting Part 2 of this series later on this week. With a Primal/Paleo diet and lifestyle and a little record keeping, it is possible.