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For YouReal-Stories

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

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

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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Amy Martin

Marketing Director

Amy is a high achieving individual with a number of marketing awards under her belt, including Young Digital Business Person of the Year 2019. She is a big believer in digital marketing and an expert in executing personalised targeted campaigns. Amy strives to learn from data and campaigns that show return on investment.

Robert Gordon

Managing Director, Gordons Chemists

 

Robert Gordon, director at Gordons Chemist's. Gordons Chemists is a chain of more than 60 pharmacies, located in NI and Scotland. Gordons Chemists is Northern Ireland's largest independent pharmacy chain.

Dr. Debbie Collins

MBBchBAO MRCGP

 

Dr. Debbie Collins MBBchBAO MRCGP, a practicing GP and partner in Belfast. She has a passion for patient education and advocacy. Her special interests are Women's Health and Fertility

Sarah Trimble

Nutritional Therapist

 

Sarah Trimble - a nutritional therapist with a passion for good food instead of fad diets. Sarah has a particular Interest in using the power of nutrition to support hormonal imbalances and reproductive health.

Barbara Scott

Director, Seren Natural Fertility
Chair, Association of Reproductive Reflexologists

 

Barbara Scott is Chair of The Association of Reproductive Reflexologists, founder of Seren Natural Fertility and author of Reflexology for Fertility. In 2017, she was awarded ‘Complementary Therapist of the Year’ by the Federation of Holistic Therapists and has been nominated for several awards within the field of complementary therapy. In 2019 she was awarded the Innovation in Reflexology Award by the Association of Reflexologists.

Barbara speaks and lectures globally on her integrative approach to supporting couples having difficulties conceiving. She has spoken at many of the Fertility Shows and Fertility Fest. Alongside her own busy clinics, she also trains practitioners in providing this integrative, approach to fertility and reproductive healthcare and well-being. The ARR (Association of Reproductive Reflexologists) has trained practitioners globally, from Australia, New Zealand, Canada, Europe, and most areas of the UK.

Her expertise and passion is in advocating a patient-centred and integrative approach to supporting both men and women on their journey to parenthood.

Cindy Charles

Fertility coach and Founder of Fertilelife

 

Cindy Charles- Fertility coach and Founder of Fertilelife. Cindy is a committed advocate of social and personal development. Her own life experiences inspired her fertility support services. Cindy has worked with the Fertility Network UK, and has had the privilege to work as a resident Fertility Coach for the London Women's Clinic on Harley Street. Cindy believes in the importance of nurturing our own fertility.

Dr. Lyuda Shkrobot

MD, MSc Gynecologist, Fertility specialist at unq.life fertility clinic

 

Dr Lyuda has a special interest in reproductive immunology. Dr Shkrobot assisted in establishing the first European Donor Egg programme at Sims, coordinating and liaising with Intersono Clinic in Ukraine Advisors. She is passionate about patient-centred, results-driven care.

Jill Martin

Business Development Director

 

Jill Martin is a trained nurse and highly experienced pharmaceutical professional. Most of her business acumen and skills were developed by the world class training she received at Glaxo Smith Kline (GSK). Hard work and focus have resulted in a varied and successful career working in several different disease areas. As part of the Diabetes team at GSK, an opportunity arose to develop and support education programmes that were rolled out to the NHS across the UK, which resulted in improvement of Strategy and Patient Care. Jill feels that education is the key to understanding and has made it a personal goal to self-improve and support learning for others especially within the healthcare arena. The last 10 years have been devoted to trying to impart the importance of Fertility Health early in the life cycle of us all, rather than when infertility issues arise. She is delighted to have joined Nua Fertility on their mission to support people and communities to understand the importance of gut health on our fertility well-being.
 

Share a little about yourself—the things we wouldn’t learn from simply reading your professional bio.

The most important thing to me in life are family and friends, it breaks my heart when people are broken and I know that I am always trying to find solutions to problems. I love being outside rather than sitting at a desk and would rather lift the phone and have a chat with someone rather than email or message. I find people interesting and will often be that annoying person who starts a conversation on a train or plane.
 

What was your journey to parenthood like?

I feel very blessed to have had my family naturally, although not without some challenges. Following a miscarriage and thyroid issues conception wasn’t as easy as I would have hoped. My personal experience made me appreciate how important it is to value ways to improve your fertility health. This set me on my own journey to find out more, by surrounding myself with a network of experts in this area who I am continually learning from. When possible I take every opportunity to share best practice or send information to others that I know who are also seeking to understand more.
 

What is your ideal way to relax and unwind?

Juggling home life and working full time with a lot of travel, for most of my adult life made me find a way to relax that may seem strange. I love getting my trainers on and going for a long walk or run, even in the rain! Sometimes I will listen to a podcast and other times just be mindful of my surroundings. I find this a great way to clear my head, think about priorities and take time out for myself.
 

If there was just one thing you could impart on women on their journey to parenthood, what would it be.

From an early age I loved to make jigsaws, little did I know that this skill would help me later in life to understand the complexity of fertility and the miracle of life. Everyone is unique, every situation is different, like a jigsaw there are lots of pieces that need to be put together to become complete. Explore all options, chat to experts don’t be afraid to ask for help.

Aoibheann Murphy

Chief Financial Officer

 

Having trained with PWC, Aoibheann qualified as a Chartered Accountant in 1997. She subsequently spent eight years working in industry, gaining invaluable experience in many areas In 2005 Aoibheann became MD of Pangur Consulting, providing professional expertise to a broad client base. She is looking forward to the new challenge of Nua Fertility.
 

Share a little about yourself—the things we wouldn’t learn from simply reading your professional bio.

 

What was your journey to parenthood like?

Right craic!
 

Do you prefer podcasts or books? And of the one that you prefer, what is a show or title that you recommend?

I love sport…any sport…and the outdoors. Living in the Barrow valley I get to enjoy swimming and kayaking in the Barrow and exploring the Blackstairs mountains. Since I hung up my soccer boots (the body just couldn’t take it anymore!), I’ve been cycling with my lovely friends in Mount Leinster Wheelers and was chuffed to have completed the Ironman 70.3 triathlon event in Dublin in 2019!
I’m an avid reader…books beat podcasts hands down!...although recently I’ve dabbled with audio books through the library app Borrow Box. “A Little Life” left its mark on me. A harrowing story, definitely not for the faint hearted.
 

If there was just one thing you could impart on women on their journey to parenthood, what would it be?

Don’t be consumed by the roles in your life – parent, partner, employee etc. Parenthood, be it getting there or going through it, will have its tough times. Cherishing yourself as an individual and making time for yourself can help you through those times….it’s good to be a bit selfish!!

Mark Mullins

Director of Sales

 

What was your journey to parenthood like?

To be honest it was very difficult. At the beginning we thought that when we decided that we wanted to start a family Deborah would fall pregnant shortly afterwards like many of her friends. As time went by, we started to suspect something was wrong. After initial tests we found out that I had a low sperm count which meant that we would have to go down the assisted pregnancy route. This took me several months to get my head around as I blamed myself for this. All I wanted was my wife to be able to go through the pregnancy journey. We couldn’t wait to become parents. There were many long and painful nights where I thought this would never happen for us. After several failed attempts we decided to look at further ways of improving our chances. This led us to look at fertility supplements, our diet, exercise. I will never forget when that morning during our Two Week Wait when Deborah woke me up at 5 a.m. to show me those two lines, we had both been yearning for! We are blessed to now have our beautiful daughter.
 

On challenging days, what kept you going? Where did you find inspiration?

My wife was my inspiration. She kept me going through those challenging months and years. She was there to help me deal with everything. The guilt I felt when I saw her having to go through everything.
 

What is your ideal was to relax and unwind?

My latest passion is cooking on my BBQ. I find it so peaceful and I just switch off. It just gives me a bit of alone time which everyone needs.
 

If there was just one thing you could impart on men as they begin trying to become parents, what would it be?

I would highly recommend communicating with friends and family. A problem shared is a problem halved. Failing that there are some really good private Facebook groups for men suffering from infertility. I found this great support through the good and especially the bad times.