‘Endometriosis’ to me: My stolen life, my stolen inner power, my stolen friends, my stolen unborn children, my stolen creativity, my time, career, energy, friends, family and my broken heart.
Endometriosis is my daily pain and my daily negotiation. I am not given each day; I fight for each day. I am given some days and those are the days I live. The other days are made up of moments of compromise. I am a full time mediator. I constantly negotiate between the symptoms of endometriosis, my quality of life, my best interest and the expectations of life and those around me and it can be exhausting!
I first noticed something wasn’t quite right in my early teens. I used to roller-skate competitively as a child and clearly remember the moment endometriosis first impacted my energy. I had taken a year off skating to enjoy some time off with my friends over the summer between primary school and high school. The first time I felt true fatigue was when I returned to roller-skating after having the time off. I was training after school one day and remember having a hard time keeping up with what would normally be a high energy session, however it had never been an issue in the past. I was exhausted half way through my lesson! The exhaustion and flu like symptoms hit me like a ton of bricks. I remember putting it down to being a teen and having time off. I thought my fitness had rapidly decreased and that I was simply getting older and wasn’t as energetic and strong as I used to be. I thought nothing more of it. I eventually quit skating as I simply couldn’t keep up.
I was a lucky teen. Yes, I had bad cramping and fatigue but what teen isn’t sleepy? It’s normal to be tired as a teen and ‘period pain’ is normal right? That’s the most part of societies view anyway. I thought my experiences were normal. I would spend hours in the nurse’s office at school with cramping and fatigue. Some days I would have to go home to rest, but who didn’t? At that stage I hadn’t noticed the vast difference between ‘tired’ and ‘endo tired’.
I was fortunate to graduate from high school and go on to study interdisciplinary art. I loved art and still do. I always felt it was my gift and comfort. It was something I didn’t have to work too hard at to achieve results; it was and still is my passion (although I don’t have the energy for it these days). I had a few good years at art school before graduating and having every intention of living a full life.
Endometriosis reared its ugly head. I met my husband shortly after graduating art school and like an oversized lethargic bear, endometriosis followed. Almost as soon as I became sexually active I became very sick. I stopped painting. My periods became heavier and longer, along with grinding fatigue. I started experiencing hot stabbing bowel pain after eating and before bowel movements. I experienced bladder pain, bloating, painful intercourse, lower back pain, mood swings, and waves of weight loss and weight gain. The bouts of pain and fatigue became longer and my good days became fewer. If I found a dress I really liked I would buy it in 2 dress sizes as my weight would fluctuate constantly. I started to develop the shakes. Over a one-year period (no pun intended) the pain intensified, until one day BANG it all came to a head.
After a couple of years of presenting my symptoms to more than one GP and being told, ‘Everybody gets tired’, ‘You’re a vegetarian’, ‘Period cramps are normal’ I collapsed in the toilets at work. The pain I experienced caused me to lose momentary consciousness. I awoke on the floor of the cubical barely able to move. It felt like my stomach, legs, uterus and back had been stitched together with barbed wire and someone was pulling the barbed wire so hard that I was unable to move from the fetus position.
When the pain subsided enough for me to be able to move, I cleaned myself up and crouched (enough to appease the barbed wire) as I walked to an office for help. I was driven home and took the maximum dose of Naprogesic before the pain subsided and I fell asleep.
I woke to my partner coming home from work. As I woke I was violently ill. I vomited, was nauseous, faint and the barbed wire had started to pull at my insides again. What I was experiencing I now recognize as the familiar symptoms of an ovarian cyst bursting. This cyst was eventually the catalyst to my diagnosis of endometriosis. I was 22 years old.
After a diagnostic laparoscopy I was finally diagnosed with endo. When I awoke from the anesthetic, in a maternity ward of a local public hospital I was confronted with the issue of fertility. I remember bursting into tears after being told I probably wouldn’t be able to have children. I remember being comforted by the other women in the ward, all lovely and pregnant, waiting for their bundles of joy to arrive. I was devastated. My husband (at that stage boyfriend) and I had been together for over one year. We were enjoying our youth and hadn’t thought about much beyond that. I couldn’t believe that I not only had a disease that was incredibly hard to pronounce but also caused infertility as well as a world of pain. We had a choice to make. We had to focus on getting pregnant or chose to treat the endometriosis. We chose both in a way. The next few years of our lives would be a balancing act between managing my pain that had become an everyday event and trying our upmost to get pregnant.
The pressure was on; I was 22 and needed to get pregnant so I could seriously consider the option of hysterectomy for relief (yes, I was told that this was the ultimate option for ongoing relief). We tried everything. While our friends were travelling, partying and enjoying their youth most of our spare time was spent in waiting rooms and trying to balance our lives as much as possible. I saw several gynecologists and fertility specialists before being fast tracked to IVF at the tender age of 26. I was resentful and grateful at the same time. We had hope. IVF at our age was almost guaranteed pregnancy in our eyes. No matter what the doctors said, it had to be! My husband (fiancée at that stage) was healthy. I had the endo removed a couple of times by laparoscopic excision, so technically our chances were good.
This is when life became complicated. Over the next few years we tried. We tried EVERYTHING! Early mornings at the IVF clinic, afternoons on hold waiting for results. I tried eating healthier, exercise, more surgery, private health, cutting my hours down at work, cutting down my pain meds, rest, acupuncture, homeopathy, more IVF.
As the years passed, my symptoms became worse, the quality of my life decreased and my heart broke. Remember the friends that were traveling and having fun in their youth, when my husband I were trying to get pregnant? Most of them had now returned home, had settled down and were having little ones of their own. My partner and I married when I was 28. I am now 37 and all I have to show for the years of trying to conceive are medical statements, many scars and a broken heart that I am working on healing.
The hardest part about living with endometriosis for me is the social isolation resulting from infertility. I belong to a minority group of women; I am the 1 in 10 women that live with endometriosis and fights to reclaim quality of life on a daily basis. In that minority lives another minority. The women with endometriosis that and been robbed of their fertility. The women that can’t bear to think about walking through the card section of a news agency, or the baby section of a supermarket; The ones that cry themselves to sleep on Christmas Eve and Mother’s Day. It is very hard to explain the depth of emotional pain endo related infertility has caused me. It’s hard to identify exactly where it comes from. Is it the bitterness of sacrificing my youth to know that I tried everything? Is it the guilt of not being able to provide my husband with a child or my parents with grandchildren? What if the years of fertility treatments made my endo worse? What if? Is it the guilt of someone else’s happiest moment triggering my pain? Who knows! What I do know is it has made me strong and humble. My journey has taught me compassion and has left me with a strong passion to make a difference.
What do you wish someone had told you about endo when you were first finding out your diagnosis?
Honestly I don’t know. I was diagnosed before there were support networks for women with endometriosis. What I would say to women that are diagnosed now is that you are not alone. Get networking! Through adversity you will find truth and in truth there is comfort. If your friends walk away from you because you fail to meet their expectations, forgive them and move on. It is not in your head. You are not letting anyone down. Endometriosis is letting you down and all you can do is your best. Be kind to yourself. You are the mediator and that can be exhausting, the mediator needs a break sometimes too.
At one stage when most of my friends had walked away, or weren’t there for me I learned to be there for myself. Through networking I have found a wonderful group of women that also live in Western Australia. We can laugh about the fact that we cancel plans at the last minute, we compare notes and resources, we empower ourselves. Take control, empower yourself, trust yourself and be kind to yourself!
Thanks endo for challenging me. You have shown me how to be kind, compassionate and both gentle and strong at the same time. Thanks to you I have met some beautiful souls and learned so much. You have given me wisdom beyond my years and although you are a literal pain my side I am grateful for the life lessons learned at a young age.