This disease actually is nuts. One day, or even week, you can be on top of the world and want to get a million things done or feel like you can accomplish a dream, and the next you can’t get out of bed. It can be a bit of an issue if you’re trying to be a functioning human.
If you’re not sure what endometriosis is, that’s OK. It seems like most people don’t know what it is, and even if they do, they don’t understand it unless they have it. But that’s one of the reasons I decided to start this blog and begin to share that side of my life on social media. I figure that the more we post about things on the internet and social media, the more exposure it gets, and things can hopefully start to change.
Endometriosis is a disease in which the endometrium (uterine lining) is found outside of the uterus and inside various areas of the abdominal cavity. It causes chronic inflammation which can result in scar tissue, and is commonly found on the pelvic peritoneum (the lining in the abdominal and pelvic cavities), ovaries, bladder, bowel, and the recto-vaginal septum (thin structure separating the vagina and rectum). Basically, the tissue growing outside of your uterus responds to the same signals your body sends to the tissue growing inside your uterus. This means that the tissue outside of the uterus is also going through a constant reproductive cycle (aka. when you ‘bleed’ every month, so does the tissue in your abdomen – except it cant go anywhere).
Symptoms of endometriosis are different for everyone, and you can have a tiny bit that causes a massive amount of pain, or you can have it all over the place with little to no issue. Generally, the symptoms are overly painful periods, painful ovulation, pain during or after penetrative *cringe* sex, heavy bleeding, fatigue, chronic pelvic pain, and infertility.
A lot of people are under the impression that endometriosis can only affect you when you have your period. WRONG. It can affect you all the time. I’m definitely not a doctor so I don’t fully understand the specifics of hormones and the human body in general, but I do know that a female reproductive cycle actually consists of a number of phases which are occurring all month, every month. In other words, your reproductive cycle is not just your week-ish long period.
Now, if you don’t have symptomatic endometriosis, or you don’t have it at all, imagine its the week after your period and you feel great (maybe). You are awake, confident, mentally present – and you can fit into your clothes. But as the week(s) goes on you start to get tired, and a pain in your lower abdomen starts feeling like a pin is poking you from the inside. The pin feeling starts to turn into sharp stabs, and walking makes it worse. It’s there at night, and suddenly so is the need to pee every 30 min, even if you haven’t had anything to drink in hours, or you just went to the bathroom a minute ago. This continues and you can’t fall asleep, you keep waking up, and you’re uncomfortable. In the morning, you feel sick. Physically ill, dizzy, nauseous, the thought and smell of food makes you want to vomit. It happens every. single. morning.
So now you’re exhausted, you have a sharp pain in your abdomen that is constantly there, you feel like you have to pee all the time, and you’re feel like you’re going to puke and pass out (in no particular order). But wait … theres more!
You have a headache, the pain in your abdomen has gotten so bad that over-the-counter medication doesn’t work anymore but stronger stuff makes vomit or knocks you out (you can’t even drive while on a lot of prescribed painkillers). You cant really stand up straight, when you do it feels like your going to pass out (or maybe you’ve already passed out). At this point, you need to amp up the use of your hot water bottle, the only problem is that it’s not a mobile solution – unless your comfortable walking around and going to work with a big, hot, piece of knit-covered rubber sticking out of your pants. Oh, and you need it suuuper hot to work so after two days of using it you have bruises on your lower abdomen from the heat.
Pooping has now become an issue. And I don’t mean an “I need some RestorLAX” or “crap I drank the tap water in Mexico” issue, I mean a horrifying pain issue. You have to go, but when it starts to happen you get a SHARP (i’d like to emphasize S H A R P) pain that literally feels like someone has reached their whole damn arm up into your colon, grabbed onto something important in there, and ripped it out through your anus. The organ-ripping feeling is also accompanied by an apparent twisting knife-punch to the pelvis. You need to sacrifice your eyes and look at what just happened to make sure you didn’t loose an organ and, behold, blood. A lot of it.
Now this blood isn’t your period. You check just to make sure, and YEP it’s coming from your booty. And it is painful AF. Then your period shows up so now you have the ‘regular’ cramps on top of all the other sh*t going on, so, in general, you feel like Satan himself is twisting your ovaries with a red-hot pitchfork. Your boobs are swollen. You’re bloated to the point where your clothes literally don’t fit and you’re self conscious because you look at least 3 months pregnant (and the bloating can happen any time in your cycle). And, obviously, you have ‘blood’ coming out of your body for days in varying amounts, possibly from two different holes.
Take all of these things and repeat them. Every month. For years.
Describing endometriosis is difficult. It causes so much pain and discomfort that you can’t actually put it into words in a way that gets the point across. If you have symptomatic endometriosis, you probably know exactly what i’m talking about. If you don’t have it, then hopefully now you at least have a bit of an idea of what it’s like. It’s impossible to fully describe it, and it’s impossible to put everything i’ve felt physically, mentally, and emotionally, into a single blog. I might not be able to get it all out in multiple blogs. But everything I just described is how i feel pretty much every month, with a good week or two here and there. (I’ll go into more detail on certain things later on).
When you have endometriosis, other diseases, horrible experiences, and general suffering, the world doesn’t just stop spinning because you’re in pain. You are expected to, and have to in this economy, go to work/school every day and proceed with life as society demands. You also aren’t supposed to “look sick”, and let’s be honest, you don’t want to look sick. Maybe you don’t even want anyone to know how you’re actually feeling most of the time because you’re self conscious about it.
Regardless of if you are trying to hide it or not, when you are in pain every day it takes a toll on you, and there is very little support for a disease like endometriosis. It can have autoimmune affects (it definitely does for me) as well, and the whole pain + getting sick easily thing can be a real problem for going to work every single day. But, in Canada anyways, Endometriosis is very hard to get a diagnosis for and it is not currently something that you can get assistance from the government for. For a long time it wasn’t even considered to be a disease worthy of proper discussion because it was – an often still is – considered to be “just a woman’s issue”. That’s not incorrect, technically, because only females can get endometriosis, but the fact that something female-only is disregarded simply because of the fact that it IS female-only is a SERIOUS problem.
I’m not going to go on a rant about men’s issues v.s. women’s issues, but I will say that health (and many other) issues shouldn’t be gendered, regardless of who it affects. If something is horrible and affecting millions of peoples lives worldwide, it deserves attention.
I started a GoFundMe in order to help advocate for and raise money for endometriosis research. If you want to help, please learn and spread awareness about this disease, and donate if you can. No amount is too small. If you’re interested, please click here.
You can also follow me on Instagram and Twitter where I post whatever I want to, and try my best to advocate for endometriosis.
The Blog of Erika 