Living a life with endo...

I found my voice a few weeks back on Instagram when I shared some words about feelings and coping with endometriosis. I was surprised to have received comments from others about this (see previous post) It's always hard to sit and try and come up with words to explain how much of a struggle this is. For someone who is not a sufferer they wouldn't be able to understand the pain that we endo sisters have to go through. It's the pain that people dismiss as "period pain" or the pain that "everyone gets" but if pain doesn't go away then surely that can't be seen as a "normal" or "everyday" thing. 

When you are told that you have endometriosis there are no words to simply describe how to feel in that moment. A mix of emotions overwhelm you and you aren't sure what to feel. You are told your treatment options are this or this option and then risks are explained. You are told this would be the best option because of this reason or this isn't recommended because of age or whatever reasons. Then everything moves so quickly and fertility is brought up in the conversation. The words "The risk with surgery because you're so young could mean fertility can be affected." It's like you are instantly made to jump forward ten years or so of your life to think about pregnancy and having a child. After hearing the shit news you are left to make decisions on how best to go forward but what if you don't know or if you're like me feeling scared and uncertain about any decisions that you need to make. Then the part about there being no cure is explained and management is key. Every chance taken of trying to stop the endometriosis growing back is ruined because it keeps on producing which means that pain becomes a thing again. But the one thing they forget to mention is the way it affects you emotionally. The consultants are just there to treat the physical side of it and the emotional side is the burden that you have to carry with you every day.

Alone. That's what I feel. None of my friends or family understand except two people who have endometriosis. They tell you how they're sorry to hear about the diagnosis and start showing all this sympathy just like if someone had died. They tell you to be strong and everything will be okay. The reassurance isn't enough. They don't understand what it's like to be in pain, having to force all these different pills down your throat to manage the pain and all the days and nights wasted because of pain. You tell yourself time and time again " I'll be ok" but that's hard to believe but it's the one thing we have to hold onto when having a flare up. The clutching of the abdomen while doubled over trying to manage that sharp stabbing pain that becomes stronger. The tears streaming down your face and the need to try and stay silent so nobody hears the cries from downstairs and sees how the condition defeats you. Powerless. No control. Weak. You do everything the doctors tell you to do but the condition overpowers and makes life impossible. The fear of not knowing. Not knowing what the future will hold. A future of uncertainty. The need to take each day at a time because planning ahead is unbearable. 

They tell you "You are so bloody strong and tough" inside your head you're thinking "NO" and you can't accept these words from them. This is stealing your life away from you . You have to act like you're strong because if you don't then how would people view you. You would let endo win and that would be it. You would become the girl with endometriosis and not the girl with opportunities ahead of her.

You wish you knew how to let someone know how to help. It's hard to think what they could do because it feels like a lonely journey. It feels like nobody can reach out and guide you through it all. It seems like everyone is getting on with life and doing all the things that most people do like going to university, having a family and graduating. Then there's you... The individual who is consumed by this condition and how much it is tearing you apart inside. A daily and long battle that feels like it's just constant. The way it curls up around you and takes over your body and mind. The way it grips on and doesn't let go. The difficulty of finding ways to battle through on bad pain days when it all just feels too much. The pages of writing, the history of phone calls made to Samaritans to try and find someone to sit through the darkness with you and to find some sort of hope in a really dark and shit place. The feelings of letting people down when having to phone in sick for work and leave them a staff member down. Life feels like it's at a standstill. Things may look like they're going okay but really they might be hard.