Pilonidal Cyst – The Butt Kicker

Let me just start this by saying I’m not a trucker (otherwise known as a lorry driver in the UK). I can’t drive a manual transmission at all, and I really can’t be trusted to park anything bigger than a hatchback. But one week, I developed something that turned out to be common to truck drivers, located at the top of the cleft of my bottom and slightly to the left, called a pilonidal cyst.

Usually the truckers get them because they spend hundreds of hours sitting on their seats, and their sweat and bacteria get caught up in a hair follicle and mash it all together to cause an infected and painful cyst. When these cysts are drained, usually the hairs are located within them and uncoiled and determined to at least partially be the culprits. They will never be to blame it on my body because I don’t have hair anywhere; I have alopecia universalis, so I don’t even have eyebrows or eyelashes, much less curlies on my backside.

It didn't take long for a cyst to form

These cysts are intensely painful. I suspect part of the issue is that they build up in an area that is close to the last portion of the spine where the bones are nestled tightly together, and the skin is thinner. It’s also not normal for a large amount of bacteria or that type of bacteria to congregate in a hair follicle. (I think oil glands tolerate invasions better than other types of glands in the skin.)

It didn’t take long for this cyst to form – maybe a day or two? – and I thought I could just take some over-the-counter pain medications and wait it out. I was wrong. I waddled like a penguin every time I got up from laying down (because I couldn’t bear sitting down), and doing regular activities like showering and dressing was very slow going. Every time I got into my bed I did sort of an awkward log roll. Instead of going to an urgent care, I contacted a same day surgical doctor through my local university hospital and requested assistance.

A pilonidal cyst diagnosis

The doctor decided to take care of me at the time of my appointment. He diagnosed me with a pilonidal cyst and explained that truckers usually get them. He warned me that because of the acidity of the bacteria and the high concentration of them in the cyst, I would probably not get a lot of benefit from the lidocaine he would use to numb me, but he would do his best. He was oddly cheerful. By that, I mean he was moving very swiftly, whistling loudly and seemed to be very unaffected by any sounds of distress I made. At the very most he would say, “Yep, yep, it hurts, we know why.” He got it sliced open and began pushing the contents out, and then it seemed like he was pushing forever. And pushing. And pushing. And not enough lidocaine. He poked me more to see if he could numb me, but it didn’t work. So he just pushed more. I think there was some scooping involved. Out, bacteria, out!

Finally he felt like he cleaned out as much as he could. I was feeling everything. His nurse gave me instructions on how to change the string packing every day. She also said that because it was in a hard-to-reach area, to go to urgent care since we were hitting the weekend, and have them repack it for me if I couldn’t do it myself.

The ol’ college try

I really did give it the ol’ college try when it was time to change the packing the next day. But I just about passed out. It was incredibly raw. The closest I can get to describing it is ripping off the top layers of your skin and then lighting what’s underneath on fire. For that Saturday and Sunday I did go to urgent care to get their assistance. When I explained to the staff why I was there, they did a side eye look at each other, but I didn’t budge. There was no way I could do those first two days alone.

After I made it through that weekend, I was able to change the packing myself; it had gotten slightly more tolerable. Every day after that it was easier still. I breathed a sigh of relief because I wasn’t sure I could ever do that again. I found out that I was just all kinds of wrong.

I went in for my 2-week checkup and told the surgeon that it seemed like the site was just a little bit sore on one side. He looked at it and declared that I healed too soon and he needed to open it back up. I didn’t have a lot of time to process it or discuss it with him, but he said he was just going to “manually” do it, no numbing. I got in position, pants and knickers pulled down…and he proceeded to mash the site mercilessly with the stick end of a medical cotton swab. I was bear hugging the exam table and trying to hold still, but sweating profusely as the surgeon said over and over, “Just a little more,” cheerfully as he again whistled. Why? Why me? I rarely ask that, but I did then. Finally he said he was satisfied that he opened it up enough for any trapped bacteria to get out. I just laid there on the table, panting and sweating through my clothes. The doctor had just made hamburger of my wound. I was completely traumatized.

Learnings from the pilonidal cyst

After going through 2 more weeks of daily dressings, my wound finally sealed correctly without trapping more bacteria. I don’t ever want to do that again. (Do you hear that, body? Don’t even think about it!)

I have learned some very specific and valuable things about pilonidal cysts. First, this episode should have added to my diagnosis of HS. I had other symptoms, but this is like a flashing neon sign and tornado siren. There are so many patients who get these cysts, but HS is ignored because it’s assumed that the patient isn’t clean and that’s why we end up with this crazy thing on our backsides. Second, focusing on the healing process of the cyst, a lot of patients skip the packing or sort of do it but sort of don’t. As much as it hurts, pack it up! The string serves two purposes. It keeps the wound from closing out over the top and doesn’t allow an open, germy area to form a pocket. Also, the string keeps the tissue raw so it can latch onto itself as it heals, sort of like a zipper. Every time you pull that string out, that horrible ripping action actually encourages the raw edges that will eventually meet up.

I can’t see it, but I can feel that scar as a reminder of this mighty little ordeal. Have you had a similar experience?