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The Blatherings Of A Blitherer

Pains in the Ass: Pilonidal Cysts and You (pt 1)

December24

I had surgery on my butt in August and I’m going to tell you ALL ABOUT IT in a series of posts because apparently what I do on the internet is talk about my ass. Which has resulted in a bunch of really interesting twitter bots following me. Lord help me when I try to get a job and they do a google search on me or something. Anyway. Pilonidal Cysts.

I have a cystic skin condition unrelated to Pilonidal Disease, so when I had gross oozing, bleeding, swelling, and pain at the base of my tailbone/ass I assumed it was just my skin being awful and trying to kill me. I’ve lived with this for LITERALLY twenty years. TWO DECADES. I was aware of what Pilonidal Cysts are, but what are the chances that I’d have hidradenitis suppurativa AND pilonidal disease? IT IS TO LAUGH. Of COURSE I’d have both! I mentioned my butt issues to my general practitioner who said “Hm, that sounds like a pilonidal cyst, pull your pants down” and I did and mooned her and she said “yup that’s a Pilonidal Cyst here’s a referral to a surgeon.”

I foolishly assumed the surgeon could like… lance it in his office and that’d be it. OH LOR. NO. It involves actual knock-you-out surgery and I’m going to talk about that in a later post. But right now I’m going to talk about what a pilonidal cyst is.

There’s a lot of misconceptions about Pilonidal Cysts/Pilonidal Disease and what causes it. The general idea most people have of Pilonidal Disease is that it’s caused by fat hairy gross dudes who sit around too much in a slouched position while playing computer games and jerking off. It’s OBVIOUSLY caused by ingrown hairs, poor hygiene, improper seating posture, etc.

Actually, according to my surgeon, it’s not! It is, I believe, related to Spina Bifida. When the fetus is forming you have the neural tube that eventually closes to form the spinal column. Sometimes it doesn’t close completely and a little pocket or closed tube is formed. Either you’re born with it or you’re not. If you’re born with it, either a hair grows into it or not. If a hair grows into it, either it gets infected or it doesn’t. If it gets infected either it comes to a head on its own and drains (like mine did, continuously for twenty years) or it just swells up and is horrific. It’s entirely chance. There’s nothing a person can do to cause or prevent it. Lancing, antibiotics, etc don’t really affect it. Even if you can get it into remission, it’ll come back. The surgeon I saw stressed that it’s something he sees all the time in men, in women, in thin people, in fat people, in hairy people, in not hairy people, in active people, in sedentary people. It’s just a thing that happens. And it can be treated.

The surgeon I saw removes the entire Pilonidal Sinus in out patient surgery and then stitches it all up. He does not pack the surgical site unless the stitches fail, which I appreciate, as I didn’t want to deal with packing. It took me about 3 weeks before I could sit again (I basically spent two weeks doing nothing but lying in bed, which actually is awful.) In my next post I’ll talk about how to prepare for surgery, and what happened with my surgery.

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I have hives. It’s grosser than I expected.

January23

A few weeks ago I felt a little weird in my face area before bed. I checked myself in the mirror and my face was blotchy and swollen. I generally felt unwell and had been battling a cold so assumed it was a sinus infection. I complained about it a lot, took ibuprofin, and drank a lot of water and it passed. In retrospect, though, I think it was hives.

Last Thursday I noticed a rash on my stomach. It was faint pink and vaguely itchy. I assumed it was dry skin or possibly that I’d gotten bleach cleaning spray on my skin through my shirt while cleaning the kitchen, but it got darker and itchier and spread. Also the backs of my knees really itched, but I assumed it was just eczema. Today, one week later, it’s covering my body from the tops of my thighs to my throat/neck, and snaking its way down my arms to the insides of my elbows.

I look kind of like a mottled pink and white cheetah or something, all blotches and roseates. My soft organic cotton t-shirts feel like fine grit sandpaper on my shoulders and back. I suddenly find myself scratching fervently at various places, scratching hard enough and long enough that while I haven’t broken the skin and am not bleeding, its moist and slightly weeping. I sit on my hands to keep from scratching myself raw, and suddenly find myself scratching my butt/hips/thighs. I fold my hands together, fingers twined, and suddenly realize I have welts on my wrists and am scratching them.

I’ve been taking benedryl, which does nothing much to alleviate the itching or hives.

My big fear is that I’ve developed an allergy to one of two things:

1) Some super common food that I eat all the time like eggs or butter or wheat or coffee that will be hard for me to avoid
or
2) zinc, which I take as a supplement to address a skin condition I have (hidradenitis suppurativa) that causes me to randomly and spontaneously break out in abscesses that take f o r e v e r to heal. The zinc doesn’t CURE the skin condition, mind you. It just puts it more or less into remission until you stop taking the zinc and then it gets as bad as ever.

I have an appointment with a doctor for Tuesday. I’d been meaning to make one for a while so I could get a physical and generally get checked out, but I wanted to get new glasses ($200-400) and get my teeth taken care of (god knows how much) first.

I’m pretty nervous about seeing the doctor because I’ve had some really horrific and abusive medical experiences in the past, and the fact that I’m fat does not help at all. We’ve had insurance in place for a while now… about a month?… but I’ve held off going in to get my asthma and PCOS evaluated– as well as starting documenting my skin condition for future disability claims*– because of the incredibly negative experiences I’ve had.

(* this skin condition never gets better. There’s no treatment for it that heals it, the best you can hope for is to keep it from getting worse. It’s very common for treatments that HAD been working to suddenly stop working. It’s intensely painful and can and does affect mobility. It’s one of (the?) only skin conditions one can get SSDI for, a process that’s intensely difficult to do. I fully expect to be in increasing pain from this and potentially require a number of surgeries that remove areas of skin and under lying tissue. The fact that I’m a stay at home parent and spend most of my day in yoga pants or pyjama pants is AMAZING for my skin, as clothing that causes friction also leads to increased instances of abscesses. Yet it’s very difficult to work a job where you’re in soft, unstructured clothing all day.)