What is it?

A pilonidal cyst is an abscess which usually contains hair within the cleft of the buttocks at the base of the tail bone. They can be espescially painful and oozey or completely asymptomatic. Some discover the problem at the emergency room, complaining of terrible pain and a rear end they cannot sit or lay upon. Some people will notice a bump or a hole and never think another thought about it, experiencing no pain.

The origins on the cyst within the body are debated. Some people are born with a pilonidal dimple (such as myself), which is a small open indentation (think buttcrack mini-belly button), however they have no more prevalence towards having pilonidal cysts than anyone else. Some think it is a congenital condition. Most doctors currently agree that enlarged hair folicles allow easier penetration from debris in the area.

Since most of these cysts contain hair, it is considered to be the culprit. In that region hair can grow up and out, only to find opposition from the opposing butt cheek. Having nowhere to grow, it curls back down and becomes infected. Hair from other parts of the body can drift into the crevasse, where the comparatively glacial cheeks push them into the follicles. Unfortunately for those who don't fit the description, having these cysts chronically has been called hirsute man's disease, though it is more formally called pilonidal disease.

I'm not hairy. Really. I'm not a man either.

These cysts, as a chronic disease, were first recognized in World War II, and was called jeep rider's disease (80,000 cases¹). Even today, two things are commonly mentioned to doctors during an initial visit: recent trauma or bump to the area or having been seated for long periods of time, such as a car ride.

As a sufferer I must say that the name jeep riders's disease seems quite apt. I cannot think of anything more intolerable to a rear suffering the turmoil of a pilonidal cyst than a bumpy ride in a government jeep. It feels like your tail bone is grinding its way through the skin. There isn't a comfortable position. The best you can do is keep the weight off your tail bone. That is impossible in a bumpy crap-ass jeep in war terrain (I assume). The name states ideally the worst-case-scenario.

The cyst experience

The cysts can be big (like a golf ball or bigger) or small (like a pea) but size has little to do with the amount of pain which may be present. They can burst, leaking a sticky, smelly, and itchy goo and blood. If they do pop, they are almost certainly infected. Although this usually serves to relieve much of the pain, it isn't a good idea to let them get to this point. Most doctors treat the first ocurrence of a pilonidal cyst by lancing and draining it, packing it with gauze (to be removed in a few days), and prescribing an antibiotic.

I let mine get bad. I discovered a hole where there shouldn't be a hole. I freaked out. Since it had popped, the doctor gave me antibiotics. Since I mentioned having on-going butt pain which I'd attributed to weight loss, he referred me to a surgeon to have the cyst "cored".

When I saw the surgeon, he wanted to lance it to get more gunk out and relieve the pressure, and schedule surgery in a few weeks. The lancing wasn't too bad since he shot me with a local anesthetic. It wasn't pleasant, but it was okay enough that I felt I could deal with a few more lance-and-drains should it recur. I put off surgery (I was a chicken).

The Recurring-Cyst Experience

Even one who only experiences a single painful cyst will be sympathetic to the conditions described by the disease. One cyst is agonizing aplenty. Continual recurrences are a nightmare.

If there is no recurrence count yourself very lucky, many people will have another cyst. Surgery is generally considered the treatment. Doctors talk about it in a nonchalant manner, and to them it is perhaps not an everyday operation, but it isn't a difficult or overly dangerous one. Being a lay-person and writing this from the patient point-of-view, it sounds atrocious and horrible (particularly hearing terms such as "coring" and "saucerization").

If you're of the view that life isn't fair, have heart. Rush Limbaugh suffered has suffered pilonidal torture. In fact, it got him a deferment from the draft².

For me, it did recur. It opened up about two weeks after the first lancing, but I ignored it since it felt better after popping. Just last week, after a weekend backache and the familiar sit-down pain, I knew it was back, and bad. I wound up in the emergency room, crying and begging for painkillers. It was lanced again (this time FAR more painful than the first). My doctor told me to stop being a wuss and schedule the surgery.

Treatment

There are several techniques but they all sound fairly similar except in how they are closed. The surgeon will go in and remove the cyst, such that normal tissue should fill in. The hole with either be: left open to be packed twice daily with gauze, sewed shut, or (in extreme cases) a skin graft may be used to flatten the cleft. Left open, there is less liklihood of recurrence, but it can take up to 2 months before it will fully heal and will require daily care for at least that long. These surgeries generally won't require a stay in the hospital, and you will want to take rest for about a week.

I'll update this after I have my chance under the knife. I am anxious to rid myself of this menace, though understandably concerned about the procedure.

It's taken me a while to get around to writing this. You see, who wants to stand up and talk about the extra holes in their butt, and what lies beneath? What woman wants to admit to having a hirsute, jeep ridin' man's disease?

Update (as promised!)

Before the surgery, I prepped by having my sister write "Hi Dr. Kravitz! :)" on my right buttcheek. I was taken into the pre-op area and prepared. They inserted my IV, and I was told that due to a kiwi allergy, they would be using latex free everything, due to a connection between kiwi allergies and latex allergies. I was wheeled into the operating room and was introduced to everyone. I was told to lay on my stomach, and they got me into the right position (ass end WAY up). The anesthetist began pushing the drugs into the IV, and I began to get giggly. Then Dr. Kravitz found the drawing on my bun. That's the last I remember until I was being wheeled into the post-op area.

I was still under the effects of general and a strong local anesthesia. The nurses asked how I was and laughed when I said "I feel quite lovely, thank you."

I was released fairly quickly, and didn't experience any pain whatsoever until I awoke the next morning and found the local (ie, ass) anesthesia had worn off. Then I spent an awful week trying to figure out the best way to be comfortable (there isn't one).

I've had no problems of recurrence, everything is all closed and now my ass is normal, with no extra holes or anything unusual (except the resulting scar). There has, however, been quite a bit of continued discomfort with sitting; it still feels as though I have a cyst which will pop any moment. I have been assured, however, that this is just the scar tissue, and that it will go away with time. So far, this has been a success and I recommend it to any pilonidal cyst sufferer.

Cyst Prevention

With or without surgery, prevention is key. If the patient is hairy in the area, shaving may be a good (if awkward) idea. The area must be washed daily. Many self-care websites recommend using an anti-ingrown hair solution. Sitting for long periods is a really good way to bring on a painful rear-end. Travel may make staying seated unavoidable at times, but don't exacerbate the problem in front of a computer or television.

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sources: I wrote this from memory, having read a lot on the internet and visited my doctors very regularly regarding this very topic. I quoted the first article below twice, but edited out one reference to a now-debunked theory about the sinus being present at birth as a vestigial (insert medical gobbledeegook here). The phrase they used made me think "vestigial tail", which gave me a giggle, but really bore no real relevance. The 80,000 cases in WW2 just seemed like a neat stat to quote. So I attribute the article below. Any errors or omissions are because I'm not a doctor, just a person trying to learn about an unpleasant and painful but rather benign condition.

1. http://www.emedicine.com/emerg/topic771.htm
2. Thanks to BJuarez pointing this out to me, and http://past.thenation.com/issue/000619/0619franken.shtml for backing it up.

This is the story of my Pilonidal Cyst. Sexy stuff, I know, but it's a story I think worth telling. This story spans from June 21, 2003 (the day Harry Potter and the Order of the Phoenix was released), to the present day.

So I go to get the aforementioned book on a whim with my mother. I'm 17 at the time, and never was much for the series, but we thought it'd be fun to jaunt out to the bookstore at midnight and pick up a copy (she read them, too). There is a medium crowd, mostly consisting of kids in wizard outfits and their handlers, but we're in and out pretty quickly.

So we got home, I read a few chapters, then sleep. I get up, settle into a good chair for reading, and finish the book over the next 6 or so hours. I notice some discomfort sitting, but I chalk that up to being sedentary for so long. Again, sleep.

The next day, the upper right quadrant of my ass crack is swollen like there's a golf ball embedded in my ass about an inch under the surface. And it hurts. Ooo, it hurts. But believe it or not, I believe it is an insect bite of some kind, in a sensitive area, and bound to go down over the next couple of days.

Which turned out to be wishful thinking. It has gotten bigger, and more painful. By this time, I've gotten over it being on my ass, and shown my mother. She thinks it looks like a cyst of some kind, and thinks we should schedule a doctor's appointment, which we promptly do. That day, after the appointment was scheduled (for the next day), it started leaking. Although I'm not sure leaking is the right word for reddish-brown thick toothpaste gunk with the smell of death oozing from extra holes in one's ass. Pilonidal Sinuses, I was later to find out, were letting the infected cyst vent.

So that seems pretty bad, but the leaking actually relieved pressure, and made the thing pretty much cease hurting. One downside: when it started leaking, I was like "WTF, Mom, look, it's leaking!"

"Well... I guess you better press on it and I'll get the paper towels..."

So there I am in the master bathroom pressing on this infected cyst oozing smelly infected pus at my mother, who's staring at my ass and wiping off the goo. This is the first in many humiliating episodes... (although it really makes me appreciate my mother)

That night, I sleep with a Maxi pad taped to my ass, in case I leak.

The next day we go to Oakland Kaiser, but before the appointment, we go out to eat at a place we frequent, Mekong Gardens. It's really quite good food. We have a relatively pleasant meal, until I stand up and realize that infected pus has soaked through my pants to make a stain roughly hand-shaped. Slimy, red thick nasty stuff....

I pull down my shirt and walk over to the waiting room. My regular doctor has a look at it. First words out of his mouth? "Oh wow, that looks painful!" He diagnosed it, and gave me a referral to the Surgery Department, who would take care of it.

Within a couple of days (this is early July, 2003), I'm seen by a resident. He will cut into the cyst, take out the infected matter (hair, pus, etc.), drain it thoroughly, pack it and give me a course of antibiotics afterwards, because there's more surgery in the offing (the final solution to a pilonidal cyst is excision), and surgeons don't operate on infected tissue if they don't have to.

He numbs my butt pretty well with local injected and topical anesthetics, and goes in with a scalpel. Rather a lot of the same brownish pus comes back at him, along with a lot of fresh blood, but this is what residents are for, the ugly work no one else wants to do. Once he's carved his way into the cyst, he takes some forceps, and delves deep. He roots around, and grabs the offending lump of tangled, infected, and bloody hair, and pulls it out, dropping it on the stand next to the procedure table. Good sized lump of hair that was, in my ass.

So the cyst's still there, but it's not full of hair or infected anymore, and they've got me on some nuclear antibiotics, gwaranteed to nuke any bugs in the system. Aftercare involves my mother pulling out the old piece of gauze that's wedged an inch deep in my butt, and pushing a new one, soaked in saline so as not to stick to me, all the way back in there. Painful. These are just 2x2s, at this point.

This healing goes pretty well, after a few weeks we go on a road trip to Oregon, see some family, things are pretty good!

I'm just about healed when we talk to a surgeon about solving the problem once and for all. Surgery. Excision. Surprisingly, I'm game. We decide to try closing the gaping hole in my ass with stitches, which works about half the time(he said), and the other half, they open it up and have to pack it like the rest of the time, so it's win-win.

The surgery happens in the beginning of August, 2003. Operating rooms are surprisingly welcoming. The table's comfy, and they always give you those warm blankets. I remember getting hit with the general anesthetic, IV.

In the recovery room, I'm lying on my side. I'm not in any discomfort, their local hasn't worn off yet. After a few hours, some crackers, and some ginger ale, they dispense me a large prescription of Vicodin for the pain I'll be feeling later, and wheel me out to the side, where my mom loads me into the passenger's seat. I sit forward, almost doubled over, to put my weight on my thighs, not on my recently hollowed out ass.

The next few days I am in a haze of Vicodin, including when I saw Tom Waits in San Francisco at a benefit for the family of the bassist of the stage production of Hedwig and the Angry Inch, who died in a tragic car crash. His name was Matthew Sperry. (that concert was awesome, but I'm getting side-tracked).

A few days later, my stitched together buttockal cleft started to hurt more than it had, and swell. It turned red. All of these things are warning signs, even to the layperson, of infection, yet when I went to the Emergency Room to have it looked at (it was bad), the doctor there said it was fine, and that I should go home and rest. The next day, my wound spewed forth another load of infected pus. The closing had failed. Now, the theory went, the surgeon would just snip the stitches, and we'd proceed as usual, packing the wound.

Taking out the stitches hurts, a lot, and packing even more so. Vicodin is my friend. The week or so of being closed has let my wound heal, partially, and in unhelpful ways, which makes packing even harder.

Over a period of weeks, the wound shrinks some, but doesn't go away. The surgeon regularly applies Silver Nitrate to the wound to stimulate healing. Silver Nitrate literally burns off the outer layer of tissue, to activate healing. After perhaps a month and a half of hoping that this would heal, the surgeon delivers this bad news: There is granulated tissue in the wound. The healing's been buggered up, and the surgery would have to be done again.

This comes as a bit of a shock, as you might well expect, I'd been hoping this would be all over soon...

We find out later that this is due to the surgeon's not taking enough tissue out in the first place, leaving some cyst still in there. They refuse to admit error, however, to avoid frivolous lawsuits. Bungling or not, it needed to be done again.

We figure that I won't be able to go to school for at least a week after the surgery, and accordingly we schedule surgery for my next vacation, winter break, specifically Christmas Eve. This time, I'm under the care of the Head of Surgery, who sports an awesome mustache and bow tie combo. He's also quite skilled, as you might expect.

I pass the time in a nicely elevated mood, due to all the Vicodin that I'm taking for pain.

When I go back for another surgery, it's all routine. This time, they gas me. When I recover, my ass feels significantly bulkier. I'm packed with gauze.

The next day, Christmas Day, I try to have some toast and grapefruit juice, and promptly vomit. The anesthetic still hasn't really worn off. I get KOTOR under the tree, and proceed to waste the next weeks playing it. It worked nicely in that respect. The next day (the day after Christmas), we unpack and repack my gaping ass wound. I had literally meters and meters of gauze tape in the wound, bloody and slimy. We repack, painfully.

And basically, it's wash, rinse, and repeat until the wound disappeared. Healing went much better under the head of surgery. He never used Silver Nitrate, and the wound didn't even hurt. That didn't stop me from abusing the Vicodin, mind you.

As described above, I feel a lump there still, of scar tissue, which makes it uncomfortable to sit on the top of my ass. I find myself sitting forward a lot, which was pretty comfortable when I was healing, too. No reports on whether my ass has a funny scar on it, I can't see, and I'm not showing anyone, either.

One funny thing, though... To ensure proper healing, no hair may enter the wound during healing, which meant that my mom had to shave my ass crack every week or so, with the surgeon doing the detail work around the edges manually with a scalpel. Several people were involved in the bi-weekly shaving of my ass.

It took me a while to get off the Vicodin. It took willpower. That's not the point of this writeup. Opiate addictions aren't cool.