Living with Hidradenitis

I promise not to waste your time with a five-thousand-word entry about my entire life. I'll keep this short because you've probably come looking for some kind of answers. Most doctors don't have any for what we've been diagnosed with: hidradenitis suppurativa. I asked multiple doctors for half a decade why I would suddenly develop an autoimmune skin disease at the age of twenty-five when I didn't even have acne as a teenager, and the answers I received were discouraging. "We don't really know what causes it." "The only treatment is surgery." "Let's put you on an antibiotic." "It's probably hereditary." I was even more discouraged when I began internet searches and found an ugly lack of research on the subject. This disease isn't that uncommon.

Let me tell you my story, and then I'll tell you some good news.

Around the age of twenty-five, I developed a strange lesion under my skin in my bikini line area. It began to grow and seemed to fill with fluid, but it never surfaced. It was painful, and I noticed that as it grew it "spread" much like it was tunneling under my skin. I went to a dermatologist, and by that time, another smaller cyst had formed on the opposite side of my bikini line. They decided that I just needed an in-office procedure, and they removed both cysts with only local numbing.

Fast forward one month. The biggest cyst came back with a vengeance. I could hardly walk sometimes. I begin using apple cider vinegar soaked cotton balls and bandaids to cover the cyst. By the next day, it would crust over and begin to drain. It would always fill up again. My gynecologist took a look and told me he would do a more aggressive surgery and remove all of the cyst. He was the first to diagnose it as hidradenitis. I underwent anesthesia, and the doctor said that he removed all of the cyst and I was good to go. Wrong. Within weeks, the cyst was back. I decided quickly that surgery did nothing for my condition, but it sure racked up medical bills.

I began dealing with the issue passively, as I had no clue how to treat the disease, and clearly, neither did the doctors. Oddly, one day, about a year later the cyst calmed down, and only rarely does it get inflamed any longer. Anytime it has, it creates it's own drain hole and goes away quickly. You'd think I'd be pleased. You'd think I'd be happy with this, but the cyst has left a lot of scarring, and something worse has happened. As the years progressed, the areas where the cysts popped up increased and so did their numbers. Their sizes are a lot smaller--generally--but they are still pretty painful. They started in my bikini line, then I started getting them on the outer buttcrack area, and then I began to get them under my arms.

Full of frustration, I frantically searched the internet for answers, no matter how outrageous: heredity (no one else in my family has this exact same issue), chemicals, clogged pores, hormones, yeast (candida), weight, bacteria, diet, etc. I tried all kinds of concoctions: turmeric paste, antibacterial washes, essential oils. None of it worked. They might be onto something with the hormones because mine have been jacked up for the same amount of time that I've had the hidradenitis, which led me to the question: what if my hormone issues (including a large ovarian cyst), adult acne, and hidradenitis are all spawned from the same culprit. What if that culprit is inflammation? And what if that inflammation was generated by certain foods?

Bingo. The more I researched. The more I came to the conclusion that most people with hidradenitis have noticed that certain foods cause their hidradenitis to flare up worse. I began experimenting over the course of two years, and sure enough, every time I avoided gluten (or wheat products in general), my acne got better, my hidradenitis cleared up much more quickly with fewer flare-ups, and I felt better overall. But it wasn't stopping the breakouts and flare-ups entirely. Then I began to notice that every time I ate a lot of sugar, bell peppers, or potatoes, I would have much worse flare-ups almost immediately the day after, even if I was avoiding breads/carbs/gluten at the time already.

I was pretty sure I had found my answer. And then I found a new doctor, and for the first time, a doctor said these words, "Oh, hidradenitis is caused by carbs and sugar." I was overjoyed, but also bummed because I knew how hard it would be to give up carbs, sugars, and things like bell peppers and potatoes, which are part of the nightshade family, known for stimulating some autoimmune disorders. And boy has it been hard. I want to kick myself because it is so hard to give up sugar, especially, but I make mistakes and I regret them every time a new cyst pops up the day after. Oh, by the way, the doctor also said that my insulin resistance and the cyst on my ovary could also be helped by changing the way I eat and live. I know I can't completely avoid carbs and sugar because that's unhealthy. Our brains need them, but knowing the limit is the trick.

I know that every person with hidradenitis will probably have slightly different triggers, but food certainly seems to be a consistent factor. So, if we want to heal our bodies of this CURSE, we have to make tough choices and avoid the foods/substances that flare it up and take better care of our bodies in general: exercise, hydration, vitamins, sunlight, stress control, etc. I've had to tell myself that this is a for-life change, and I have to stick with it if I want to feel free. It's hard, but I don't think french bread and rootbeer are worth a giant cyst near my buttcrack. I do like to sit down sometimes.

I hope this site helps you. For the most part, I'll post anti-inflammatory recipes I've created for the everyday hidraddy's out there.