That phone call with the doctor was officially the lowest I have ever felt in my life. I remember having the doctor on speaker and hanging up and collapsing at my husband's feet and wailing.
We spent the first two months of the pandemic bunkered down in Los Angeles, leaving only to grocery shop or breathe in the fresh air from our surrounding block. In March of 2020, the Australian government announced a series of mercy flights, with one of the last flights leaving Los Angeles at the end of April. After many years in the US, we hurriedly packed up our life and booked one-way tickets to Brisbane.
The flight was like being transported to a dystopian future where the world had become too toxic for human existence and hazmat suits were required to survive. Everything we touched was treated as infected and had to be disposed of in a sealed bag. We exited the Qantas flight to be greeted by the Australian military and police who escorted us onto buses bound for the hotels we would spend the next fourteen days isolated in.
A few days into the quarantine, I started to experience a heavy period and stomach cramps. I took painkillers and baths to ease my symptoms but a week into the bleeding I started to feel lightheaded and spaced out. My husband insisted I speak to a doctor. I shrugged it off and attributed the pesky symptoms to my body trying to adjust to life after the pill.
After a dizzy spell that rendered me horizontal on the bed and another more serious plea from my husband, I relented and called the Queensland Health service. The nurse said it sounded like a bad period, but she would prefer I go to the hospital just in case. I felt embarrassed at the thought of going to a hospital for a period but there was no option to send a doctor to our hotel room during the pandemic. Twenty minutes later I was in the back of an ambulance careering through the streets of Brisbane.
I was tested for Covid, however, my test results would not be available for another thirty-six hours so I was put in the Covid ward, in a bed behind a thick yellow line that no staff member was allowed to cross without full PPE. At that time, many of the Covid wards worldwide were bursting at the seams but Brisbane’s was empty. In fact, I was the only patient in the ward. I felt radioactive, isolated and alone.
I was asked by the nursing staff if there was a chance I was pregnant. I shook my head furiously.
“There’s no way, I’m in the middle of a long and heavy period”, I said.
The doctor left and the nurse approached me again and with a gentler tone and soft and sympathetic eyes, touching my arm, she asked me
“Are you sure you don’t have any other symptoms? Do you have any shoulder tip pain?”
“Well, I just had a little pain in the middle of my back, on one side but I know it’s just from sitting in an uncomfortable chair working on my laptop. It’s not related, so I didn’t bother mentioning it”
Her face dropped. She disappeared and then reappeared with the doctor at my bedside.
“Miss, you’re pregnant,” the doctor says.
Time stopped. I entered a vortex, trying to process what I’ve just heard.
Pregnant.
Bleeding for eight days.
Dizzy.
I was then rushed into the ultrasound room where I saw the ruptured fallopian tube that had been causing the week-long bleeding and back pain for the first time. I had survived a week with a ruptured fallopian tube, brushing it off as a bad period. I would come to learn that ectopic pregnancies are the leading cause of first-trimester mortality in women so I will be forever grateful to my incredible husband who instinctively knew something was wrong with me before I did. Without him insisting I speak to a doctor I’m not sure how much worse things could have become.
The nurse can see I’m in shock and bewildered. She comes over again with that gentle voice.
“Do you understand what we are saying? Do you know what an ectopic pregnancy is?
I shake my head no.
“The fertilised egg got stuck inside your fallopian tube. That pain in your back was a sign of the ectopic. We need to remove the whole tube and we need to get you into emergency surgery immediately.”
I’m terrified and can’t remember anything about female anatomy from PE class. Tubes…wait how many of those do you have? Does it mean I’ll be infertile? Can I get the tube replaced?
I feel like an idiot, so I do what any good millennial does, I whip out my phone and start furiously googling, trying to understand all my options. The doctor tells me that I have no other option than the surgical management of this ectopic pregnancy due to the rupture, but she assures me I can still get pregnant naturally with one tube. Miraculously she tells me that one tube can float between your two ovaries, going to the ovary which is releasing an egg that month.
My husband was still in the hotel room thinking I would stroll through the door with a smile and some painkillers at any moment. I begged the doctors to get in contact with the health department to request a compassionate exemption be made so he could leave the hotel and be by my side. Each attempt was denied. Eventually, my phone ran out of battery and I gave up hope of him ever coming. After many phone calls through the night, and a failed escape attempt, my husband burst through my hospital room door at 2am. I have never been more relieved to see him in my entire life. We fell into each other's arms and sobbed. He was only allowed ten minutes with me before having to go back to the hotel, but those ten minutes were everything.
I didn’t sleep at all that night. I Iay staring up at the ceiling until the morning when I would be wheeled into the operating theatre for my laparoscopic surgery. My whole body started to shake uncontrollably from fear and tears leaked out of the sides of my covid mask. The team of female nurses and one female doctor surrounded me, put warm blankets on me, and in unison placed their hands on my body and told me I was safe and everything would be ok. I will never forget the kindness and empathy of those women and the many others I would come across throughout my journey. This journey has shown me the best of women.
The three incisions where they inserted instruments in my stomach healed well, however, the pain in the neck from the gas would persist along with heavy feeling in my chest. It sounds corny but I guess that’s why they call it heartache. About a week after the hospital stay, a fog descended. I would sleep late every day and in the moments I was alone, I would sit in a chair and just stare. I became convinced that I was sick in some other way as I was spaced out and dizzy most days. Feeling like I was on drugs and somewhat separate from the world around me. I demanded the doctor run an exhaustive list of blood tests. The doctor sat me down and told me I was “a perfectly healthy girl, but are you a happy girl?”. At that moment I realised my symptoms were ones of psychological distress. Whilst I was never formally diagnosed, I read about disassociation and the description seemed to fit. It was my brain's way of trying to protect me from the trauma I had experienced.
I was told by my doctors and everyone around me that I simply had terrible luck and the odds of it happening again were slim. 1 in 10. No further investigation was made. Four months later I would find out I was pregnant again. I was surprised as it had taken three months for my period to return and then I had become pregnant again straight away. My husband was excited, but I cried secretly in the shower. We told the friends we were away with at the time. They all assumed we would have a baby in nine months. I knew that view was too simplistic. Only those that have experienced pregnancy loss understand that any subsequent pregnancies are shrouded in anxiety, fear and dread. I insisted on being taken to the hospital for an ultrasound at three weeks pregnant, but it was far too early to tell.
The moment I hit the six-week mark, I again insisted on an early ultrasound to see if the pregnancy was viable.
Another ultrasound.
Another embryo out of place.
Another empty uterus.
This time my husband was beside me in the room, so I had a front-row seat to his heartbreak instead of just my own.
I was numb but deep down I had this feeling the odds were against us. I just knew this would happen to me again. I had a feeling that I would continue to fall on the wrong side of the statistics. This feeling wasn’t just a fleeting moment of anxiety, it was a persistent inner knowing.
This time the ectopic pregnancy was managed through a methotrexate injection which was administered to me in the chemotherapy ward of the hospital – a very sobering moment that reminded me to be grateful I wasn’t battling cancer. The injection was followed by weekly visits to the Early Pregnancy Assessment Service at the hospital. This was to monitor my HCG levels until they were down to zero so they could declare me no longer pregnant. Other women in my position were going to the clinic for weekly monitoring to see their baby grow but I was going for weekly monitoring to make sure the life inside me was ending. The injection had very few physical side effects, but I found the inability to try for another pregnancy or begin IVF for three months after the injection the most gruelling part. Time seemed to be ticking loudly and something deep inside me told me that the goalposts would shift on me many more times. I was right.
A 40% risk of a third ectopic, I was done with trying naturally. I'd fallen on the wrong side of the statistics twice now, so I needed to regain some semblance of control over the situation. I was overwhelmed at the thought of IVF but I turned to my friend who was knee-deep in the process. She begged her doctor with a multi-month waiting list to see me that week. The doctor ordered a transvaginal ultrasound, HyCoSy and Sonohysterogram to assess my reproductive system before beginning IVF. These initial tests were crucial to getting an understanding of my situation before beginning the emotionally, physically, and financially taxing IVF process. These are the procedures that I wish I had done after the first loss as it would have prevented the second.
Once again the ultrasound showed bad news, this time an abnormal uterine cavity. I was referred to a specialist who performed a Hysteroscopic surgery and confirmed I had a condition called Asherman's Syndrome. This was the name given to scar tissue inside the uterus that can occur in varying degrees, from mild to severe. Ashermans Syndrome is typically acquired after a Dilation and Curettage (D&C) that has caused damage to the uterine lining. Many women have D&C procedures and do not acquire the condition, but there are some that do. Many women endure years of frustration and loss before getting this diagnosis so initially I felt grateful to know the reason behind my losses.
More googling. More terror.
The information on the internet varied but it was presented as a rare condition. The words from one article would haunt me for the rest of my fertility treatments.
“Severe Asherman’s sufferers' only chance for a baby is through surrogacy.”
The big S. That S word that would bring me to my knees literally. I would hear that word mentioned at various points by three out of three doctors I consulted over the next 18 months. Surely it won’t be severe, I couldn’t be that unlucky, could I?
“You have severe Asherman’s syndrome. The way the scar tissue is right now there is no way you could have a baby.”
That phone call with the doctor was officially the lowest I have ever felt in my life. I remember having the doctor on speaker and hanging up and collapsing at my husband's feet and wailing. I gripped onto his ankles like life rafts and a sound came out that I had never heard myself make. It was a deep guttural, primal wail. It felt like someone turned the lights out on my life. At that moment I felt like he told me I was dying, and I had no future. This is not to compare my situation to those who do get that tragic phone call but to attempt to quantify the level of psychological distress experienced by couples experiencing infertility. I would later learn that studies have shown that the psychological symptoms associated with infertility are similar to those associated with cancer, HIV and cardiac rehabilitation.
My doctor tells me I will need one to two hysteroscopic surgeries to clear the scar tissue and then I can move forward with IVF. Even with severe Asherman’s, he assures me he has had good results. Hope seeps back into my veins. The lights are dim, but they turn on again. I would go on to have a second, third, fourth and then fifth hysteroscopy over the course of the next year. Each surgery uncovered a new piece of information with the final surgery concluding that I did not actually have Asherman’s Syndrome. I had a congenital defect of the uterus classified as a Mullerian Duct anomaly. There are many types of Mullerian Duct anomalies, but specifically I had the T-shaped kind. I don’t blame my doctor for this, as the uterus is a complicated beast and my distorted uterine cavity as well as a concealed fibroid had created confusion. He tried his best to create more space in the cavity through a procedure called a hysteroscopic metroplasty.
This congenital defect had caused the ectopic pregnancies and obstructed the uterine cavity. Whilst the cavity was now looking better, the surgeries had caused the uterine lining to be thin and patchy. Another difficult problem to overcome.
I did eventually start the IVF process but was completely unprepared for the unique heartbreak of embryo loss through IVF. Embryo loss is early pregnancy loss. Life has been created from the moment the embryo forms. It’s not a competition of who has it worse, and every woman is different, but I can share that my embryo loss was more personally devastating than experiencing the ectopic pregnancies that were conceived naturally. So much time, effort, money, and hope had been poured into those little embryos and no one around us understood that this was a pregnancy loss. I could say the word miscarriage and people understood but embyro loss is different, they failed to see that each embryo loss represented a child who could have been born who now would not be.
IVF is the part of the journey where you believe it’s all meant to come together and work in your favour. You’ve put in the work, done all the things - acupuncture, massage, vitamins, blood tests, PRP treatments, kinesiology, given up wine and coffee, seen a shaman, done hypnotherapy… the list goes on. IVF also typically comes at a time when it’s the last resort and the grief has already swamped you. We watched those embryos literally grow via a video on our phones. We told our family members about those embryos. We had photos of them. We knew what stage of life they were at. It was a level of intimacy with the reproductive process that typically couples do not have. It is not common for you to watch the exact moment of creation or for you and your husband to watch the embryo arriving into the uterus. For many women IVF will work but there are some of us who will not leave with a baby.
My husband and I have been consumed by the IVF process for a year and half now and after two egg retrievals, three prepped for, but ultimately cancelled, embryo transfers, three failed embryo transfers, and one embryo that did not survive the thaw, we have decided to take a pause, to go travelling and remember what we still love about life and each other.
I’m not sure what the future holds for us, but I want to make meaning from this experience, so I hope to continue giving back to other infertility warriors through Pink Elephants and my Instagram community.
- Libby