A Pain in my Ass…LITERALLY
My Constant Companion
I have the vaguest of memories about the first time I realized something was wrong. I was nine years old. I had always been tall and fat, enough so that my fellow classmates made fun of me for it. But, unfortunately, I also started puberty. Imagine being fat and developing. Not the best time I’d ever had.
Not long after puberty started, I developed a large bump on the side of my groin. It hurt like hell. I remember my mom wanting me to walk to a store with her and I cried because the area hurt so badly I couldn’t walk. She heard nothing of it, of course, and dragged me out anyway.
Eventually, that one drained out and I felt better. Mom didn’t take me to a doctor or anything (not that doctors back then knew anything about hidradenitis back then). I was lucky it cleared up on it’s own.
But that wasn’t the only one. More came. Over and over again. On my groin. Under my arms. Under my breasts. And they hurt. And they smelled sometimes. I cried so many times over these areas. Why did I have to have this? What even was it?
It wasn’t until I was twenty-one that I got an answer.
Putting a Name to it
When I was twenty-one, I enrolled at a trade school to become a medical assistant. Part of that process included getting clearance from a doctor. My mom wasn’t big on doctors, so I never had a family doctor I went to regularly. Luckily the school had a partnership with local docs for cheap physicals with local doctors around the city. I made an appointment with one not far from my home.
Sick with nervousness, I went. I didn’t want to show off my underarms, which had become riddled with oozing holes and lumps. I thought for sure the doc would take a look and deny I was fit for duty. The doctor did look and finally gave me something I desperately needed: a name for what I had.
Hidradenitis suppratia. He didn’t really explain what it was, but having that much was practically a miracle. After he cleared me for school, I rushed home to jump on the internet to find out what in the ever actual loving f**k it was.
What is Hidradenitis Suppurativa, anyway?
Back then there wasn’t a whole lot of information. Still, what little I found gave me some peace of mind.
The explanation from Mayo Cliic:
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is a condition that causes small, painful lumps to form under the skin. The lumps usually develop in areas where your skin rubs together, such as the armpits, groin, buttocks and breasts. The lumps heal slowly, recur, and can lead to tunnels under the skin and scarring.
Mayo’s HS Page
Yeah, it’s about as sexy as it sounds. I can say with 100% confidence, that it’s the absolute f***ing worst. Keep in mind, HS usually strikes areas where your skin rubs together. Arm pits, under boob, between the legs/thighs, ass crack. God, in the ass crack has been the absolute worst experience.
It has three different stages, aka Hurley stages. I’ve made a handy infographic about it below, but let me give you the Erica listing:
- Hurley’s stage 1: Bad
- Hurley’s stage 2: Terrible
- Hurley’s stage 3: F***********K
I’ll bet you can guess which stage I’m in. I always thought it was bad, but it just got worse over time.
Finding a cure
Right now there isn’t a cure for HS. There are things you can do on your own and therapeutic methods you can receive through a doctor. I’m pretty sure I’ve been on all of them at this point.
Stuff You Can Try at Home
(Of course, seek out a physician’s advice first!)
For some, HS could be triggered by certain foods. Many have removed dairy, sugar, bread and nightshade veggies from their diets. In some cases, it does help. Take one of these out and see if that makes your flares slow down
A clean scented oil that soothes. I suggest mixing it with something like coconut oil before applying to your skin. It can be harsh.
I know this sounds crazy, but it does help. Not only does it soothe, but many find it helps bring the affected lump to a head so it will burst and drain.
Tumeric is a natural anti-inflammatory. You can either make a paste with it and put it on the affected area, use it in food or tea, or take it in capsule form. Zinc has also been known to help out as well.
Oh, Hibiclens! Where would I be without you? It’s an Antibacterial and Antimicrobial skin cleanser. It keeps the bacteria on the skin from forming. I use it daily on my areas. It’s a bit watery, so you probably want to invest in getting the foaming pump version. I bought it once, then refilled it with regular bottles of the cleaner.
Again, please (PLEASE) speak to a doctor before starting any treatment! I want you to feel better AND be safe.
Treatments Doctors Could Suggest
Your doctor will probably start you off with a regimen of low-dose antibiotics. Usually clindamycin or maybe something stronger like doxycycline. Just remember to take them on a full stomach (ask me how I know).
From WebMD: Biologic drugs are human-made proteins that are designed to zero in on parts of the immune system that trigger inflammation. Medications such as Humira and Remicade fall under this.
Every doctor I’ve had surgery with says they treat HS like cancer and remove it all (aka excision). Sometimes these can be large areas of the body. Healing can take a long time and can be grueling, but It will definitely bring relief once it’s all said and done. Unfortunately, the HS could return where you’ve had surgery.
Places to find help
HS is a wild ride and sometimes it can feel like the loneliest journey. You’re not alone, though. You can always hit me up and I’ll be happy to chat. Also, here are some places you can go to either find information or support. These sites are pretty active and can provide a lot of guidance.
Moving forward
Whew, that was a lot. I hope it helps! I will be doing an ongoing series in regard to my life with HS. Talking about it is therapeutic for me. Plus, maybe someone out there will see they’re not alone in dealing with this outrageous disease. As I said, it’s a pain in the ass, literally.
Keep your mind in the gutter. Until next time.
