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The Storm Ahead – a letter to my 19 year old self about Endometriosis

By April 2, 2021May 5th, 2021No Comments

Written by Best Fertility Now

Dear 19 year old Emma,

There is so much I wish I could tell you about life, especially life with endometriosis. If I could only shout out one thing to you across time and space, it would be “Freeze your eggs!”, and if we had more time, then also “You’re not fat! Eat the bloody pizza!”

Let me tell you a little bit about Older Emma. She doesn’t take any shit from doctors for a start. Her pain tolerance is astonishing. She once bit into an iron bar because the pain was so bad. She’s crawled into the doctor’s office on her hands and knees. She didn’t even realise she had sepsis once, when most people would be begging for an ambulance. You know what they say about things that don’t kill you making you stronger? It’s all true. You’re going to be in pain, and you’re going to get wiser and harder because of that. You’ll develop a self-confidence that can only be acquired through the toughest of circumstances. You’ll even try and make peace with this invisible enemy one day. Then you’ll be me, looking back at how amazing you are now, and you’ll be able to see the full picture of the storm that lies ahead of you.

In a year’s time it will become clear why you start flagging at midnight like Cinderella, while your friends continue partying all night long. You’re not being boring; your body is simply fighting a secret battle. You will start to have to cancel plans at the last minute. Don’t feel guilty about that. Forget the friends who can’t understand why you’re not celebrating their birthday. I’ve got the benefit of hindsight, and I can tell you that they’re not the people for you anyway. Those “friends” who felt like it was a personal attack every time you said no to meeting up, well, they simply aren’t important in the future. You’re about to have your whole perspective changed by endometriosis, but would have grown out of that crowd anyway.

Dancing on tables and drinking to numb the pain is your young, fighting spirit trying to take control, but as you will find out, it’s not the best idea. After all of that, you will eventually learn to put yourself and health first, and I am proud of you for that.

Let’s talk about your current problem, which I promise you won’t be a problem forever. You’re never going to be this skinny again and you know what? It doesn’t matter. Give it up. Does the eating disorder contribute to our endometriosis? I don’t really know, but I do know that you will be haunted by the memories of starving yourself, or purging after meals, and every other time you took your healthy body for granted, as you lie in pain or lie awake wondering if you’ll ever bring home a baby. Your older self is telling you straight – look after yourself Emma, you are never going to get this time back.

The truth is, I don’t believe this is your fault, even though you will blame yourself over and over. You couldn’t have predicted this, but you’ll try to find a reason, because that’s what endometriosis does to you – leaves you guessing. Logic goes right out of the window when you’re in this much pain. You’ll spend hours searching every corner of the internet to find a cure. Just a heads-up from your future self that eating 10 lemons didn’t fix it. Reiki healing didn’t fix it. Cutting out dairy didn’t fix it. If a doctor can’t give you an answer, neither can some random person off the internet with their own, wacky theory. The correct answer is actually surgery. But first you have to convince doctors that you’re not making it up.

People will tell you that it’s just a “bad period”, and F*** Y** is a perfectly reasonable response to this, even if you don’t say it out loud. Friends, bosses and doctors will dismiss your pain, and even worse, their words will be seared into your mind forever. Not being believed will make you feel like you are going insane. You are not delusional, you’re not making it up and you’re not exaggerating. Don’t allow anyone to make you doubt your own health, your own feelings and your own intuition. Only you can truly know how something feels.

Your boss is going to scold you for your absence in a year or two. When you explain the problem, he will tell you that his wife “just gets on with it”. He is a sexist pig, and you shouldn’t shed one single tear about it, but you will. This is not just a period, your insides will be swelling. Slowly intertwining themselves together. Bonding to rob you of your fertility and causing a lifetime of pain that eventually, can never be fixed. His belittling words will stay with you for years – unless you choose to shrug them off and trust yourself yet again.

You will try your best to get on with it. You will work hard between vomiting from the pain. When you black out in the morning, you will still show up to work. Do not let people gaslight you into thinking that is normal. Never, ever put a job above your health.

You will long to have your voice heard. You will walk away from yet another pelvic scan to be told nothing is wrong. It’s hard for a young woman to stand up to medical professionals, but you won’t regret doing that in the long run. You know your body best. Speak up, stand your ground, don’t leave without an answer. If you’re not happy, ask for a second opinion. Don’t give up the fight. We wasted years being undermined and messed about by the medical profession, and we could have saved valuable time. Don’t let them make you feel like a silly girl that’s making a big fuss over nothing – you are fighting for your life.

The first time you hear the word ‘endometriosis’ is your cue to freeze your eggs. You currently have two ovaries, but when you’re my age you’ll only have one. Don’t take no for an answer, don’t hesitate with this, and don’t forget to eat as much pizza as you like.

I know that right now you roll your eyes when you hear a baby crying. That’s going to change dramatically. Older Emma wants a baby more than anything. Older Emma has cried more over the loss of her baby than any breakup with any boyfriend. That was my worst nightmare, and I survived, and it makes all of my breakups seem ridiculous. Your priorities are going to change an awful lot, so don’t worry about things too much.

Is it all terrible? No. This is the time of your life right now. You will love and laugh, and there are many moments to be appreciated. But there’s a storm brewing in the shadows of the decade ahead. Your natural feistiness will serve you well. This isn’t going to be easy, but you’re a survivor. You will hate yourself for years and you will hate your womb for causing you so much pain and heartache. But you will eventually learn to love yourself, and you’ll even start to love your insides too.

Why not miss out those years of self-loathing and start loving yourself right now? After all, how can you expect your uterus to make you a baby, if you truly believe that it’s useless? You’ll discover that it’s not productive to hate any part of yourself, you don’t deserve hate on any level, even to the parts of yourself that cause you pain. And you will, I promise, be happy one day. This isn’t the life you chose, but you absolutely bossed it anyway. I’m so proud of you, well done, and Older Emma can’t wait for the next chapter in her life.

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