My Pilonidal Cyst Story

Gather round, children, and prepare to be amazed and revolted by this captivating tale of...a cyst. A really big cyst. A really big, gross, humiliating, excruciating, recurring cyst.

When I had heart surgery in August, I expected to be in a lot more pain than I was. However, after approximately a decade of dealing with one of the most painful and embarrassing medical problems imaginable, the surgery pain seemed to pale in comparison. No matter how much my incision hurt, or how much my cut muscles ached, I could remind myself that the pain of my cyst during a flare-up was so significantly worse that my surgery didn't seem so bad after all.

My pilonidal cyst is something I try to keep a secret from as many people as possible. It's just so awful. I already bared all, though, while oversharing about my topical yeast infections, so I might as well throw this out there. I'm having a flare-up right now, so it's all I can think about.

There is not much information available about  my kind of pilonidal cyst because everyone's cyst experience is different. I suspect that people with issues similar to mine just don't talk about it. So I'm going to talk about it. Prepare to be grossed out. I was going to post a picture of mine but it's still too embarrassing--just try a Google image search instead, and look for the most disturbing and painful unpopped pilonidal abscess possible.

At the beginning of my college summer vacation when I was 21, I started feeling like I had bruised my tailbone. I was drinking all the time while also taking Paxil for my Post Traumatic Stress Disorder (following a massive fire I was in and in which I lost all my belongings). I was blacking out multiple times every week, so I assumed it was entirely possible that I had fallen down drunk. My tailbone kept getting worse and worse, though, and after a week or so I could barely sit down. That's when I felt the lump rising. It was at the top of my butt crack, slightly to the right, and I could feel a squishy bump about the size of a walnut half under the skin. It was incredibly tender and hot to the touch. I tried looking it up online but didn't know how to describe it, so I didn't get any useful results.

After a week or so of increasing pain, it came to a head one night while I stayed up shaking and sweating. I think I was probably going into a state of shock or something. No amount of alcohol could dull the pain, and there was no position in which I was even remotely comfortable. I couldn't sit, I couldn't lie down, I couldn't even stand. I remember crawling to the bathroom that night because I couldn't get up, and I passed out from the pain. I woke up on the floor in a pool of sweat with the cyst bigger and redder and hotter than ever. The school clinic was closed for the summer and I didn't want to pay to go to the hospital, so I didn't know what to do. I was so scared. As it grew, I wondered if it was cancer. Or some kind of boil? Or like a chip from my tailbone broke off, lodged itself in my muscles, and caused an infection?

After I woke up on the bathroom floor, I tried exploring it more. It hurt too much to poke at it, but it really felt like it was a small balloon filling up with something, and that if I could just break through the skin it would come out. I gathered the equipment I could think of: a razor blade and a thumb tack (I couldn't find a needle). First I tried the razor blade. It was hard to see but I just numbed it with ice and tried slashing across the top with the razor. I hoped the infection was close enough to the surface that it would burst and I would be fine. Unfortunately, the infection was deeper than I thought and the razor only succeeded in hurting me. I tried the thumb tack next, but the pain was too bad for me to apply much pressure. I could get the point in, but it didn't go far enough in to help.

I stayed up all night, trembling and fighting to stay conscious. The next morning after fainting in the bathroom happened to be my first day as a summer intern at the library. I made it to the library with my roommate/best friend (the one I've mentioned who died so tragically and ripped my world apart) but I was literally standing up while driving there--I couldn't put my butt on the seat of my truck, so I held myself up with the steering wheel and drove as carefully as I could. Seriously, though, driving while standing is not a good thing. We made it there but just barely.

When we got to the library I hobbled in, still unable to walk or sit and wearing a skirt because pants would touch the cyst. We began the first day tour, during which I was still shaking and sweating and thinking of nothing but the mind-numbingly intense, throbbing, unrelenting pain. About fifteen minutes into the orientation, the pain just suddenly stopped. I could take a deep breath finally. I stopped shaking. My head cleared. I felt blissful relief.

Then I started smelling this terrible smell. It was like a container of week-old turkey salad (the kind with dark turkey chunks and mayonnaise) that was just pulled open. Just a strong, meaty, gross smell. I couldn't figure out what the stink was, but I was so relieved by the  overwhelming absence of pain that I didn't really care.

My best friend then grabbed my arm and he whispered for me to go to the bathroom. Thinking maybe I had food in my teeth or had started my period, I excused myself and went to the restroom. As soon as I got in the stall, I pulled down my jean skirt and felt hot liquid on my legs. I touched my butt with my fingertips and was horrified to feel them slipping in thick slime. I lunged out of the stall with my skirt down and locked the deadbolt on the main door (the bathroom was empty besides me). The smell was even worse with my skirt down, and I began frantically wiping myself with paper towels. There was pus and blood everywhere. It looked like someone had been murdered. Or like I sat on a blender full of animals and turned on the blades. Just totally disgusting. And it wouldn't stop coming. As I gingerly pushed around the lump, more and more pus and blood oozed out. It was this foul brown gurgling stuff, and no amount of paper towels was going to work.

I cleaned myself up as much as I could and fled the library, praying that no one would see me. I made it back to the apartment where I could see everything better in a mirror, and just kept pushing to get more and more nasty brown goo out of me. The sticky red blood mingled with the hot white pus to make a thick marbled brown substance, and the week of festering had made it smell like rot and death.

I was not in any significant pain from the moment it had burst in the library, so I could easily press my fingers around the edge to make the liquid pulse out. It took hours it seemed before I had coaxed all of the infection out, and the skin felt loose over the now-empty cavity. I did end up going back to work the next day and told everyone I had just thrown up, but I suspect they knew something was more awful had happened. I told my best friend that it was an injury from my tailbone and he was kind enough to pretend to believe me.

I dove into researching it more and finally found the most likely culprit: a pilonidal cyst. That means 'nest of hair' (I KNOW! So gross!) and I have read many comments claiming that the pain of a pilonidal cyst flare-up is worse than the pain of natural, undrugged childbirth. I believe it. The pain is intolerable, and the shame is unbearable. There's lots of great information out there about what it is (one of my favorites is the Pilonidal Support Alliance), but no one is really truly certain what causes it or how to fix it.

There are certain factors that are common amongst sufferers: they are mostly male, mostly overweight, and mostly very hairy. Poor hygiene, sitting too long, and not shaving can also affect your chances of having a flare-up. So, yeah, not exactly something I want to share: hey, everyone, I have a totally gross cyst that comes from being fat, lazy, dirty, hairy, and not a lady. So yes, this is another one of those gross fat girl things. Not all fat girls get them, but I don't think I would have it if I wasn't fat. I think my ass fat makes my butt crack deeper, which causes more hair and stuff to get caught in there, and apparently led to my current situation.

Now, some people have pilonidal sinuses, which cause them to weep out pus and blood, but they don't get the abscesses or cysts because the infection isn't trapped. Some of those people have to wear diapers because so much nasty stuff leaks out of their butt crack. I am here to tell you that I would MUCH rather have that than have my cyst. Instead of having a sinus, or a tiny hole that allows it to drain, I instead just collect the infected fluids in a cavity between my ass cheeks. This cavity gets bigger every time I have a cyst because the infection tunnels into my tissue, and because I don't have a sinus to drain it, I have to wait until the skin is stretched so incredibly tight because of the sheer quantity of pus and blood that the skin bursts open and sprays infection all over the place.

After that first eruption (my best friend and I called it my 'anal volcano'), I ended up getting a flare-up around once a year. It was usually a week of total torture--unable to move, unable to even wear jeans because of the pain, unable to go to work or drive or sleep. I kept it a secret from everyone I could. Sometimes it ruptures in the most awful places, like a gas station bathroom or on vacation. It's terribly inconvenient and ridiculously painful, but the surgery to correct it is also really painful, really awful (they sometimes sew a 'marsupial pouch' which sounds so so so gag-me-gross), and totally not guaranteed to work. Some people have had the surgery over and over and the cysts just keep coming back.

I have had probably 10-12 cysts since then, and I have taken care of most of them myself. I've spent a decade honing my care. I learned that antibiotics won't help, and nothing really kills the pain except getting it to pop. Sometimes if I take enough hot baths with Epsom salt the cyst will weaken and burst. Sometimes if I alternate a really hot heating pad with an ice pack, the abrupt change in temperature will cause it to rupture. Sometimes I make a compress of crushed garlic that is said to thin the skin and help the infection. The bad part is that, even with these remedies, it still won't burst until it's ready. I have to honestly feel like I'm dying for around 48 hours (that's after a week of intense but not near-fatal pain) before anything can make it explode. And sometimes they just never do burst--luckily, I have only been forced to seek medical attention for two of them.

Once the emergency care clinic doctors sliced me open with a scalpel but didn't go deep enough--some blood oozed out, but the cyst did not burst. I was in more pain from the scalpel cut, but after another day or so of the infection brewing, the cyst was stretched so tight that the weakened skin from the incision split open and it burst. Whew. The most recent time was also the most horrible. This cyst had been going on for almost two weeks, and it was huge and purple. I had gotten desperate and had tried cutting it with razors, scissors, needles, tacks, and even a syringe. Nothing helped. It was around the size of an egg, and I couldn't do ANYTHING. No walking, so sitting, no lying down. I had to miss work for a couple days and I was out of options. So I went to the emergency care and the doctor there was clearly horrified and disgusted. He could barely speak, but told me that it was beyond what he could care for, and told me to go straight to the hospital ER. He even called ahead to help me get in. When I got there (I rode in the back seat, laying down on my stomach and crying...there was no way I could sit) they gave me a pain killer but it definitely did not help. The ER nurse made me lie down and she just cut it right open. I felt the liquid gush between my legs and all over my back, but she didn't stop. Instead of allowing me that moment of relief, she told me that she had to scrape out the pockets of infection or it would just come right back. She stuck something in the gaping hole and I couldn't stop screaming. She scraped and the way the small pockets burst, it made me imagine them as the pulp inside an orange--those fat little envelopes full and ready to pop. But she just kept going. And going. I like to think I have a pretty high tolerance for pain after dealing with this for so many years, but she pushed me to new limits. I didn't think it would ever stop.

Finally, she finished scraping and started cleaning me out. That was horrible but not quite as soul-shatteringly painful. Then she packed the hole full of gauze and told me to have it removed in two weeks. When I got home, I couldn't even look at it. The single time I glanced at it in the mirror, I saw the bruised and angry purple flesh bulging around a curly gauze tail that was pink with blood. I felt more like a pig than ever. When I went to the doctor to take it out, I had to hold onto the exam table while he pulled it out--it must have been three feet of bloody gauze, and the feeling of it being pulled out of my body made my skin crawl.

Since that last ER experience, I have tried desperately to avoid letting my cyst get that bad. If I get any skin that feels like a scab I can potentially peel off, I do, because I feel like it makes the rest of the skin thinner and therefore easier to burst. I clean there regularly, I avoid sitting for long periods on my tailbone, I never wear thongs, and any time I start to feel tender around my tailbone I immediately start spraying Bactine and applying hot and cold presses.

Around a year ago, I had called into work and while explaining to my boss why I couldn't come in, I lost control and started sobbing hysterically into the phone. The pain and embarrassment were just too much together. I'm glad it happened, though, because she was able to introduce me to something that one of her former colleagues had used for the same issue: ichthammol ointment. It smells like tar and stains everything and makes an enormous mess, but it helps thin the skin and, instead of bursting, the cyst just kind of starts leaking out after a couple days. I've only used this treatment twice, but each time it worked like a charm. Since it didn't burst, I don't think all of the infection got out either time, but it got rid of my pain so I can't complain. I can't believe more people don't know about this. I wish I had found out about it years ago--it would have saved me some serious pain. I mean, pain so bad that I can't help but think about killing myself. Hopefully someone searching for a way to help their pilonidal cyst will stumble across this page and try the ichthammol ointment. It's been a true miracle for me, and I haven't even had a cyst flare-up for almost a year. The ichthammol is super cheap and I just smear it on and then cover it with a small cut up square of washcloth held in place with medical tape.

But...now it's back. And now the ointment isn't working. And now I'm terrified. Since my recent heart surgery, all of my doctors have stressed over and over how important it is to keep myself from getting any kinds of infection. Anything, even something as small as a cut in my gums, can potentially lead to bacteria getting into my bloodstream and forming on my brand new heart valve. So I'm really really scared. It's 5am but the pain is so bad I can't sleep. I'm sitting on a heating pad with ichthammol ointment smeared on my butt, but it's not helping. I had to leave work early for the past two days. I almost passed out when I drove over a pot hole on the way home. I went to an art gallery opening tonight but we had to leave because I was so afraid someone would brush against my butt and I'd faint or scream. I keep accidentally bursting into tears, and it hurts to do anything. Since the abscess is basically between my butt cheeks, every time I move my butt cheeks squeeze around it and it feels like torture.

I had hoped that losing weight would also let me lose this cyst. Since it's what I consider a fat girl problem, I thought maybe, just maybe, it would disappear. Enough hard work and I wouldn't have to deal with it again.

So I'm doubly sad that I'm still facing this awful thing. And I'm so scared. I don't want the infection to reach my heart. I'm hoping it will burst on its own. Otherwise...I might be back in the hospital tomorrow. I'm not one for prayers, but I'll be praying for a miracle right now.

Update: It burst! Woohoo! Ichthammol success again!