living life yellow.
the ramblings of a 21 year old
Endometriosis means I don't live a very "normal," life anymore. As I have warned you before, this blog will sometimes get a little bit TMI as we are talking about somethings that aren't often talked about. I feel when I write blog posts like this it helps others feel a little less weird, knowing that other people are going through it too. So here it is; My not so "normal" lifestyle.
Blood/bleeding. Before getting the mirena and being on the pill, I was pretty much bleeding/having my period more often than not. I can recall times of my life when I would have my period for up to a month. It wasn't just ongoing, but it was also very heavy. I would go through a super tampon in about an hour. There have been many occasions where I have been caught out by my bleeding due to it being so irregular. Moral of the story is to always have some back up clothing, soak clothing stained by blood in cold water before washing and keep pads and tampons stashed everywhere you could ever imagine.
What is sleep? I'm awake every night but during the daytime I'm exhausted. It's so hit and miss with my sleep as I'm either in pain or my mind is overloaded. Sleep is so important to me though. Chances are if I have to leave the house for an appointment or to see friends, I will have to have a nap after.
Irritable bowel syndrome, Yes, I'm gonna talk about poop. My bowel movements are never consistent or regular and it's pretty much been this way since I was 12. They tend to be one extreme or the other; Never normal. When I do have a normal bowel movement its a very good day for me. It's even got to the point that I have an app (stool log lite) to track my bowel movements so when doctors ask, I have a record of them. I also have to be careful with what i eat. I try stick to a FODMAP diet, which helps a heap but it is very restrictive.
Endobelly. I look pregnant sometimes. I've even had a lady who I was chatting to in a hospital waiting room ask when I was due. At 19 years old and being very self conscious about my size, that's the last thing you want to hear. Forget about wearing jeans, you will need something with an elastic waistband.
Constantly talking to doctors/nurses/specialists about very personal information. Yes, doctors need to know everything but it is extensive sometimes. How does it feel when you pee? Any pain with bowel movements? Does it hurt when you have sex? The personal questions go on, and on, and on. You also get the odd doctor saying pregnancy can help "cure," endometriosis. I don't think so. Talking about anything and everything is a breeze now.
Going to the doctor/hospital and they can't do anymore to help you. Until my surgery there is nothing more the doctors/hospital can do to help me. This is really frustrating for when the pain gets really, really bad and I need help, I don't get it. This also includes being treated like you're only in the ER to get drugs, not because it feels like someone has stabbed you with a knife and twisted it.
Always having to take some form of medication. Every four hours I take more pain relief. I also take a lot of pills in the morning when I wake up and more when before I go to bed. If I don't have them, I don't function. But some days, they don't even work.
Somedays physically and mentally not being able to get out of bed. Small tasks are more difficult now. Somedays I'm in so much pain to even walk myself to the bathroom let alone go and function in the outside world. This is why I do not study or work anymore.
Having a disease that has no known cause or cure. I don't know how I ended up in this mess and I sure don't know when its gonna end.