My Daily Negotiation
‘Endometriosis’ to those outside of the endo community ‘A condition resulting from the appearance of endometrial tissue outside the womb and causing pelvic pain, especially associated with menstruation’
‘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 reared its ugly head in my early twenties. I met my husband shortly after completing my studies and like an oversized lethargic bear, endometriosis followed. Almost as soon as I became sexually active I became very sick. 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 to all exploded into one ugly mess.
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 painkillers I could take before the pain subsided and a fell asleep.
I woke to my husband 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 know as the familiar experience of an ovarian cyst bursting. This cyst was eventually the one to lead 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 not only 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 life would be a balancing act between managing my pain that had become an everyday event and trying our up most 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 (fiance at that stage) was healthy. I had the endo removed a couple of times by laparoscopic excision, so technically my chances were good.
This is where it gets tricky. Over the following 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 EVERYTHING. As the years passed and my symptoms escalated and the quality of my life decreased, 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 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? 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 learnt 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.