Endometriosis : Emily’s Story

In light of Endometriosis awareness week in Australia and also sharing part of my story in a recent blog post, I have been approached by so many women (and men too!) about their own personal Endometriosis stories. Emily is one of my closest friends and I really loved hearing her story – so much so that I asked if she would be comfortable to share, which she was.

I didn’t want to go too deeply into the facts of Endo so I have the Endometriosis Australia website for all the facts and FAQ’s, but the answers are all there. I highly recommend you have a read and understand what it might be like to go through this as an every day event. It is no easy task, not one with a light at the end of the tunnel, so I find it important to share and care, as such as we all can.

Emily’s Story

“When I think about ‘Endometriosis’ there are so many things that run through my mind. Firstly, plain and simple it’s a disorder I’ve been battling for over a decade and will continue to for a long time. Secondly, anger that this awful disease crept into my life when it was so unwanted. Thirdly, I feel guilt. Fourthly, the life defining moments and lessons I’ve learnt since diagnosis and finally, appreciation, hopefully after reading this you will understand why.

Endometriosis 

Endometriosis for those who are unaware only affects women and everyone would know someone who battles it, it affects one in ten women around the world. It is a disorder in which tissue that normally lines the uterus grows outside the uterus. Think of it like glue, it’s sticks to your insides and in bad cases it can bound your organs together, it also spreads like wildfire. Endometriosis primarily affects the pelvic region on the ovaries and other pelvic structures, such as the bladder and colon but it may also occur within the abdominal cavity and as far away as the lungs, arms, legs and even the brain. Endometriosis is very painful day to day and for people with severe cases like myself it has become life changing. I think the biggest misconception about Endo is that it only affects women during their periods (it does for some women, as well as when they’re ovulating) but my reality is that there aren’t many days I don’t feel lethargic and tired when I shouldn’t be, there are also bursts of random pain that can take your breath away. Unfortunately, I am not unique, there are millions of women living with these side effects silently every day. Endometriosis has no cure.

Anger

My anger mostly comes from my journey to become diagnosed with Endo. I knew from an early age that something was not right with me, some periods I was bed bound and unable to walk, I thought I either had an extremely low pain threshold or there was something that wasn’t right inside me health wise – either scenario was not ideal. Unfortunately, after five or so years talking to doctors and tests always coming back inconclusive I gave up searching for a diagnosis and decided to believe that it was a mental problem. Doctors would constantly tell me that I had bladder infections or just that I was simply unlucky and suffered terrible period pain. In my mid-twenties I was diagnosed with depression, I suffered extreme anxiety and felt like a hypochondriac. Endo certainly made me feel less human as it affected my everyday life in so many ways, it affected my relationships, sex life or lack thereof at the time and I ended up becoming quite reclusive as it was easier to hide away than participate in life even though there was nothing I wanted more.

Guilt

I am very (very) thankful that I have not lost many people throughout my life thus far but I’ve known/know many people who have battled cancer, diabetes, other illnesses or people grieving unthinkable loss which I can’t comprehend the human strength it takes to get through. My biggest battle living with Endo (aside from the pain) is feeling like a ‘complainer’ or feeling misunderstood. Out of everything guilt is something I probably still struggle with the most, I don’t want someone to think I’m not grateful for everyday that we all get to be on earth or that I’m not aware that there are so many people much worse off. Something I know for sure though is that this is a mental struggle only, I’ve been told countless times that this is not how people around me feel and if they do they’re probably not the best humans to be around anyway.

Some of the drugs/injections I took daily for my second IVF cycle. It was a challenging and very emotional time.

Life Defining Moments

There have been a few, the first one was the day I was finally diagnosed with Endometriosis after over a decade. I felt complete relief because it confirmed that I wasn’t crazy and that my body was trying to tell me something, I was in the right place at the right time where someone finally listened.

The next defining moment was when I was told my Endo was classified as a severe case and had affected my organs. After my first Laparoscopic surgery my surgeon was able to see that my bowel and uterus had been fused together and my ovaries and fallopian tubes were damaged as well. This led to more surgeries, all successful thank goodness.

By far the biggest defining moment (and journey) was being told at 28 years old that my fertility had been compromised and the likelihood of becoming a mother naturally was very low. Motherhood has always been at the forefront of my mind even when I was quite young and being told that it might not be as easy as I thought was a huge blow. I was utterly crushed and I felt so much resentment towards all those doctors who told me for years that nothing was wrong with me but now I knew the toll of being undiagnosed had on my body and my fertility. It took a while to process this which I did quite privately and eventually made peace with this new reality, infertility struggles sadly affects so many and I knew I wasn’t alone. In March 2017 I completed my first IVF cycle to freeze my eggs. They were able to retrieve 15 eggs from my first cycle but hours later I’d lost nine as they weren’t mature enough so I ended up with 6 eggs frozen, a promising start. I started my next cycle four days later and was put on different drugs; this time I only lost one egg post-surgery and had 12 eggs frozen that day which left me with 18 eggs overall chilling out in the freezer until I am blessed enough to be in a position to use them one day. IVF was a very surreal experience which I’m so thankful for, we are so lucky a specialty like this exists and that I live in a time where I am fortunate enough to utilize it. After my last IVF cycle I was diagnosed with Ovarian Hyperstimulation Syndrome which was incredibly painful and I was pretty much bed bound for 8 days but I look back at these months as joyful as I took so many lessons away from this experience. IVF made me realise that my body isn’t as useless as I always thought, I responded well to the treatment and being proud of what my body was able to achieve was a foreign and wonderful feeling.

Grateful 

Although the majority of the affects that Endo have caused are negative, I have taken something away from every step. My biggest lesson and something I would tell anyone is to trust your instincts and listen to what your body is telling you. I was living with a disease undiagnosed for over a decade without medical attention and instead of hounding for answers I decided that I had mental problem. I don’t give myself enough credit sometimes as I did persist for so long but giving up left me in some scary situations before I was finally diagnosed where I had stints in hospital because the pain became too unbearable. Hindsight is a bitch but I’ve now learnt how important intuition is.

I try my hardest to live everyday being as present as I can and appreciate the times I am feeling healthy and pain free. Some may say I have energy and enthusiasm to burn when it comes to those around me, I never saw this as a bad thing but certainly learning to give energy to people who reciprocate it is a valuable lesson which took me 29 years to learn.

The past 12 months has been extremely challenging (health wise) and those who show up for you when they’re not asked are the ones worth keeping around. Again an invaluable lesson I wouldn’t have learnt without Endo.

Why I Wrote This

Some may think I’m yearning for sympathy but that is far from the truth. I am a pretty private person and sharing personal details isn’t something I would do without a lot of thought. I don’t believe there is enough awareness, funding or research about Endometriosis. For a disease that affects so many women there aren’t enough people who know about it. I realize it’s seems naive to think I’m going to make a real difference but if I can reach one woman seek help or even create some understanding for fellow sufferers I’d be happy about putting this out into the universe.

When you live with such an unpredictable disorder it is so important to be aware and not enough women know they could be living with this disease which when left undiagnosed can lead to many long terms consequences including infertility. Endometriosis is incredibly hard to diagnose and that is why so many suffer in silence for too long. Laparoscopic surgeries is primarily the only way to be 100% diagnosed (I wish I knew this in my early twenties) which is a very drastic approach but I would tell anyone that has Endo symptoms to not hesitate in doing this procedure. If you don’t have it, it’s wonderful news and if you do you can start seeking treatment and create some understanding of why you feel so terrible.

Every woman, every man and every boss should know about Endometriosis – if someone with Endo calls in sick there is a bloody good reason! The most important person to know about this disorder is your daughters, educate them and believe them if they say they’re in pain.

Waking up with 15 written on my hand after my first IVF egg retrieval, I will remember that feeling always – my body achieved something positive.

Appreciation 

There aren’t many occasions when you have the opportunity to thank people publicly so I’m not wasting it when I am so (so) thankful for the following…

I am so lucky to have my parents who were (and always are) beyond amazing and supportive, they also happen to be my bosses which has been a godsend as I’ve missed countless days off work this past 12 months’ post surgeries and with constant appointments so I can’t thank them enough. I’m also very lucky and thankful to have my sister and best mates for their unwavering support, visits, late night phone calls and ice cream deliveries.

I wanted to make mention of and thank my good friend Becky for letting me share my story on her blog – another fellow Endometriosis sufferer/warrior. We’ve talked a lot about our experiences and find comfort in each other, there is certainly a corner reserved in my heart for her special soul. She’s now pregnant with twins so she is my hero and inspiration every day and can’t wait to meet her little blessings.

So much appreciation to my surgeon and personal hero Doctor Tina Flemming, Dr Cu Tai Lu and all of the staff and nurses at Grace Private, Gold Coast Private Hospital and Monash IVF Gold Coast, I did eventually hit the jackpot!

I hope after reading my story (stated very briefly) you could understand why it can often feel like such a lonely disease. If you know someone who has Endo, be understanding if they cancel last minute or need a little extra support, they’ll love you for it forever.

One last mention to my angels – my support system, mine know who they are and how much I love and appreciate them, it would be so damn hard to do it alone.”

  • – Emily

If you would like any further information about Endometriosis, please contact your Doctor and jump onto Endometriosis Australia website and Facebook.

Do you suffer from Endometriosis like Emily and I? Please share your story below!

Leave a Comment

2 Comments

  1. Peta McLean wrote:

    Hi Becky and Emily,

    Wow! What a rea and an incredible story. I do believe that Endometriosis is a disease that is misunderstood and that people think that we, as women are complaining about nothing.
    Those that suffer from it, suffer in agony. I know because i was one of them.
    I was lucky enough to have two beautiful boys before my Endometriosis became really bad and took over my life.
    I had fallopian tubes fused to my bowel and my uterus fused together in places. My gyno told me that my endo was realy bad and went through my uterus and was starting to take over in other parts of my body.
    The pain is something like i had never experienced and drained you to the point of being a zombie.
    I ended up having a radical hystorectomy at the age of 37. It was the only thing that was going to cure the endo and for me to get back to being normal again. I wanted to be a Mum who could run around with the boys, go swimming, play soccer with them and not feel like i was confined to my home and my bed.
    Having a hystorectomy was the best decision that i ever made. It was truly life changing.

    Well done for this post Becky an Emily and the more people who tell their story, the less stigma wil be put on endo, i think.
    We are not complainig, we are in pain.

    Posted 8.2.17
  2. Emily Stone wrote:

    Thank you so much for your kind words Peta, there is such a stigma about Endo and I think because it only affects women it’s not made a priority as we (as women) always just get on with it… if only people knew how hard it is to do anything let alone “get on with normal life”! I am so sorry to hear how Endo has affected your life but it’s so wonderful to hear about your boys and that you’re not in as much pain anymore. Thanks for reading! Much love. Xo

    Posted 8.3.17

Instagram

  • What’s been plying on my mind lately you didn’t ask? (Lol) well, amongst many motherhood things, I’ve got to say my skin and make up routine. Firstly, my skin sucks. It’s always been prone to scarring and pimples have been so bad since I had the twins (cheers, hormones 👍🏻👍🏻👍🏻👍🏻). Secondly, time-poor (and lazy!) me doesn’t put make up on every day for being at home. Thirdly, when I actually do, I cuddle my babies in close and naturally my face touches theirs and I seriously think about the effects of my choices for my skin onto theirs. Could it harm them? Should it be more natural? Do natural products actually work? Well, in short, the answer to all these questions is YES. I think we are all aware there are products for skin and make up our there that are MUCH better for our skin, but did you know how amazing some natural and ‘clean’ make up products there are?? Bet you didn’t know this photo was taken 11 hours after I used all natural and clean products too... VERY impressed. You can see my blog post on my website (search ‘CLEAN BEAUTY MARKET’) to see my haul. You’re welcome x 
PS thank you @finnpoke_ for having me at your Pacific Fair launch last week! I made my own bowl and channeled my inner Nigella 😉

Makeup @cleanbeautymarket 
Hair @stefanhair @stefan_helensvale 
Dressed by @my.second.closet
  • Ohhhhkayyyy so I need your help! 
WHICH TEAM DO I CHEER FOR? Should be easy, but it’s not! Here’s the story:
I was born in Newcastle, NSW. I lived there until I moved to Melbourne for a few years, and now have lived on the Gold Coast, QUEENSLAND for 2.5 years. I can’t see myself moving from here for a while yet, and if anything it would probably be back to Melbourne... Fabian is an English-born-but-raised-as-a-kiwi New Zealander who claims himself as a QLDER, which means because we aren’t at all competitive, we naturally have a rivalry for NSW vs. QLD. 🙄 (I’m clutching at straws here) but the pups were NSW originals, PLUS the twins were born here in QLD, so it’s a real debate as to where I belong. I’M GENUINELY CONFUSED. Do I stick with the state I was born with or do I cheer for the state I call home? HELP! #StateOfOrigin
  • Confidence actually takes years to build. After going through all the big milestones, body changes and life challenges that the motherhood journey brings, it’s important not to forget who we are and why we are here. For me, after modelling for all those years, the body struggles have really affected me, being so used to putting such an importance on how my body LOOKED, and not at all on its functions or abilities. It’s hard to change that mindset and see yourself how others see you, or even not worry so much about negatives and begin to see the positives about yourself. Changing your own perspective takes time and is made easier when you’re in the right environment and surrounded by the right people. It also helps when you can wear outfits like this 😂 thank you to @my.second.closet for the complete overhaul of my wardrobe... it was needed, for the bod and the confidence! 
Sometimes we all need that little lift - wether it be a compliment, a haircut or a new outfit. Be sure to start this week off on a positive and give yourself and someone else a little positive reminder. It costs nothing! 
Dress, bag and scarf ➡️ @my.second.closet 💕 #beckylamb #CoulthardAndCo
  • Yesterday at Polo By The Sea.. I can’t tell you how many times I was asked if I missed the kids.. honestly, we have an amazing friend who takes such great care of them, I hardly worried! We were having so much fun with our friends too, I didn’t once have mum guilt. We all need time off - especially to enjoy time with Fabian was fun! I miss us and our old lives occasionally, but this new life is just as fun! It just takes a little adjusting, juggling and discovery of what’s most important. 
Also, can we have a moment for this outfit? The girls at @my.second.closet have so many gorgeous pieces, it was hard to decide on just one! I’ll upload more details today 💕 #CoulthardAndCo #PoloByTheSea
  • We were a little sad not to wake up to this view from @oakwoodbrisbane this morning.. Carter loved watching all the cars go past on the Story bridge. So cute to watch his little face light up as he gets excited and learns so many new things! Fab and I took the twins for a mid-week staycay this week and it was great to have a little get away just the four of us. I’d also been eyeing off @the_spaghettihouse for so long (lobster gnocchi, you’re welcome!) so we took the kids there too, and they slept in the pram like absolute gems (well, after a little while they did 😉). It was so nice to just get away together. Yep, it’s a lot of organising and preparation but it pays off and is super insightful for our upcoming trip in a few weeks. Where was your first holiday as a family to? We’re keen to do some more travelling in the next few months with the kidlets - this was a perfect first get away for us. We loved it!
#oakwoodbrisbane
#CiaoBrisbane
  • My happy and adventurous little guy,  Carter 💙 @cartercoulthard #CoulthardAndCo
  • When @misslorianne gives you mermaid hair🧜‍♀️ She is my @stefanhair at queen @stefan_helensvale ... Some foils, a tone and some tape extensions. I haven’t had these since I was pregnant and I’m loving the thickness and ability to style again. It takes a bit more time to do after a wash but I love making myself put in the effort for the way it makes me feel for the days after. My hair holds ZERO curl (it’s always strait!) so these keep it in and have me feeling goooooooood gurl 💁🏼‍♀️ What so you do for yourself after babies to make yourself feel good for days to come?  #StefanHair
  • People say not to work with children or animals... 😂 let’s just take a second to imagine how much spare time I didn’t have with my twinnies to take this boomerang 😂 the old COMFORTIS dog treat jack strikes again! Monthly protection against parasites a bonus ✔️ #ad
  • @BioOilAustralia has been there for me from the start - when I was a teenager and I acquired my first lot of stretch marks. And here we are again in full swing with these twinnies to help improve the appearance of those extra marks and make me feel like ‘me’ again. I just apply twice a day, morning and night, and it only takes two minutes, so I get more time with my little mate Carter. Those chubby cheeks get me every time! #BioOilTwiceDaily #Collab #BioOilPartnership

#CoulthardAndCo

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