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