Lifestyle

As soon as my period started we went back for round three.

After a lot of discussion we had decided it was our final round and we wanted to throw everything at it. We knew we didn’t want to be parents at any cost, and we knew that pretty soon we needed to put ‘now’ first.

Although Rich’s sperm was great we opted for ICSI – where they inject an individual sperm into each egg.

The few weeks leading up to trigger were harder than the first two rounds – I felt physically sick and emotionally spent – but I had to believe this round was going to be it.

The final internal ultrasound before egg retrieval showed very many follicles, plus a cyst on one of my ovaries which would need draining during the procedure.

In hindsight I should have had a general anaesthetic for this egg retrieval, but I’d been awake for the other two and if I’m honest with myself, a part of me felt I had to endure it because I failed as a woman.

It was painful. I looked over at Rich at one point and his face was like a mirror – his concern told me I must have looked scared and like I was hurting. As I was being wheeled out of theatre I told one of the nurses I was going to throw up and so she whisked the morphine out of my port and replaced it with a shot of anti-nausea medication.

We got 21 eggs.

The following day the clinic called with an update.

19 of the 21 eggs had fertilised through ICSI.

I took the call in the back of an Uber and tears started to run down my face when I heard that. It made me realise that I subconsciously brace during calls from the clinic because they had always been delivering bad news. I finally felt that hope wasn’t foolish.

While I didn’t experience quite as bad hyperstimulation this round I was still pretty sick. I felt like I had a really bad flu and I knew something wasn’t right. That night I called the clinic’s emergency line – they knew my number by this point -and was told to go to Emergency. We headed to St Vincent’s at 1.30am where I was told I was either having an autoimmune reaction or that I was allergic to the anti nausea medication.

I had to take the next day off work and felt disappointed in myself. I’m big on keeping work life and personal life separate and my career has always been very important to me, but I was just too sick.

The clinic then called on day three with the next update. Most of the embryos hadn’t developed acceptably from day one to day three, which again was an indication of poor egg quality.

I was gutted.

On day five – D Day – the clinic called to let us know that none of our embryos were suitable. There were one or two they’d keep monitoring for an extra day, but it wasn’t looking good.

I was so thankful that day was a Saturday. I felt like someone had flicked my ‘off’ switch. I had nothing inside me but dead space and I just wanted to lay in silence.

Rich stayed with me.

On the Sunday morning the clinic called. One of the remaining embryos had made miraculous progress overnight and was now a grade 1/2 and was in the freezer, ready to be used

I felt overwhelmed. Hope rushed back and suddenly we were back on a rollercoaster we’d spent the past 24 hours dealing with finally getting off.

But hope is a weed.

On transfer day we saw our little grade 1/2 embryo on the screen, already starting to hatch, which was a great sign.

11 days later my fertility doctor called.

Not pregnant.

I felt defeated but not ready to give up, so I stalked every GP I had been to in previous years.

I pleaded.

I grovelled.

I begged.

The GP I had seen the year prior when I’d had the last chemical pregnancy took mercy on me and agreed to add a referral to the notes from that visit. It meant it was only valid for a few months but that was all I needed – it was enough to keep going with the current round of IVF.

The two or so weeks between starting and egg collection were okay. I definitely felt more bloated and emotional than the first round the year prior but I put that down to naivety the first time – plus I had more follicles on the scan this time. But all was progressing okay.

The time then came for the trigger injection, and egg collection would come exactly 36 hours after. At 8.30pm I went to the fridge to prepare the injections – two large needles for that night and two of the same for the next morning – but I couldn’t find the syringes in my bag of medication.

I rummaged through the other bag of older meds from the year before (a nurse had told me to keep them in case I needed them) and it wasn’t in there either.

I called the clinic’s emergency number.

It turned out that through a communication breakdown no one had notified me to tell me to collect the medication from the clinic. As the trigger was included in the bag the year prior, I assumed it was the same this time as well.

The year prior I had ended up needing a different trigger to what was originally supplied in the bag, as I was at risk of hyperstimulation. This meant the trigger that went unused from that time would have to suffice now. It wasn’t ideal as it meant I could get sick, but it would essentially do the job. I was so thankful I had kept that bag of meds.

I put the phone on speaker while the nurse talked Rich and I through exactly how to do the dose. I could only have 12 ‘clicks’ of the pen that housed this medication. It had to be exact.

I injected myself with what felt like a minuscule amount in comparison to the other type of trigger which was four large needles.

I didn’t sleep a minute that night worrying that the dose wasn’t enough, or that it wouldn’t work and that if that medication was deemed unsuitable for me, what would happen now?

I called the clinic the next morning to voice my concerns and was told over and over that it would be ‘fine’. What would have really calmed me would have been an explanation of the difference between the two types of triggers and what I could expect in the coming days. Information makes me calm. Being placated does not.

But we didn’t have time to dwell on the matter because shortly after we received a phone call.

Rich’s step-brother had been killed in Melbourne.

He was 28.

I worked from home that day to comfort Rich while he took many calls from his family as the story unfolded.

The next day we went in for egg collection feeling a whole range of things. I wasn’t feeling great physically and my heart was breaking for Rich’s family. I wanted to be well enough to fly for the funeral but also knew the next five days from egg collection until my period were the worst.

We got 15 eggs.

The five days that followed were low. I suffered hyperstimulation, which means severe abdominal pain, bloating and difficulty breathing. It was a painful and anxious time. I called the helpline and while the nurse was sympathetic, the best they could offer was to go to emergency.

Meanwhile the clinic was calling with an update on our embryos.

They were fertilising poorly.

There was fragmentation.

It wasn’t working.

The night before the funeral my doctor cleared me to fly because she knew it was so important to me, but there was no way I could withstand a full day of travel, a funeral and a wake with how unwell I was. I honestly didn’t have clothes that could hide my expanded abdomen.

And so Rich went to Melbourne, feeling awful for leaving me alone sick, and I stayed at home, devastated that I couldn’t be there to support him and his family. I felt guilty for telling work and friends I was going to the funeral because I couldn’t share the hell I was in at the time.

We were on our knees at this point.

From that round we got one grade 2/3 embryo. Out of 15 eggs. A devastating result. The embryo wasn’t fit for genetic testing and my doctor suggested we do another round instead because the likelihood of it working was so low, but I couldn’t leave it in the freezer.

We went ahead with the transfer.

The process is very quick and easy, and not unlike a pap smear. They use a big instrument that looks like a rod to drop the embryo into the uterus, which takes less than two minutes.

Then you wait.

For 11 days.

You wait what feels like months to find out if you’re pregnant, and you listen to every tiny niggle within your body for a sign. But the cruel twist is that progesterone pessaries you’re administering everyday to create a healthy environment for the embryo exactly mimic early pregnancy symptoms. Sore breasts. Bloating. Cramping.

But I knew. I knew it hadn’t worked.

And on the 11th day my doctor called with my blood test results.

Not pregnant.

Shortly after the surgery Rich and I went on our trip to Hawaii – what would have been our babymoon.

There were whispers that HuffPost, where I worked, would be closing. Being in media for many years I knew where there was smoke there was fire, so knew I was about to lose my job.

I spent the trip drinking too much and checking in with the office for any news.

I also got my first period since the surgery halfway through the trip and to say it was bad is putting it lightly. I chewed through all of my prescription pain relief in one day and when there was no sign of the pain subsiding I begged for over-the-counter pain relief stronger than Advil at the American pharmacy. When I was refused I think I may have told the poor lady that it was because American’s all had a drug problem and that’s why her country can’t have nice things. Whoops.

(Fast forward to the next February in Australia and over-the-counter codeine products were also taken off the shelves in Australia. A huge blow to those with chronic pain, creating meaningful negative impact to many lives, particularly when you’re caught off guard by pain – Panadol is like having a sprinkle for dinner – it doesn’t touch the sides).

We returned to Sydney and I was made redundant. I was suddenly unemployed at the exact time I would have been going on maternity leave in my parallel life.

My father had also had a fairly serious melanoma diagnosis and as result had had a large part of his ear removed and then reconstructed.

Although I’d read I’d likely be more fertile following the surgery, I was not in the greatest place to jump back into trying. Dad was not well, and although I was lucky enough to be approached for several jobs, I was still unemployed and faced with starting a new job with a new company. There was so much uncertainty.

So we didn’t stop trying but we didn’t give it our all at that time, either.

Christmas and New Year came and went and in January I started a new job at Mamamia. My second day there was my due date. I spent the day picturing what would have been happening in my parallel life and I wanted to be anywhere but where I was.

I knew I needed time to heal from the pain of the year prior. I needed time to observe the results of the surgery. I was in a new job. I was in no huge rush to focus on getting pregnant again.

Then doctors found two tumours in my father’s chest. He had lung cancer.

Immediately I became obsessed with having a baby again. It was a compulsion. Over and over in my head I said ‘my dad is going to die before I have a baby. He will never meet my child.’

It was the only thought I had.

I contacted my fertility doctor 10 days before my period was due to let her know we were ready for round two of IVF.

My period came on a Friday night and so I headed to the clinic on Saturday morning to start my bloods, pick up my meds and start the injections.

The following Monday became The Worst Day.

I received a call from the clinic – they had noticed my referral they keep on file had lapsed. I couldn’t proceed (to claim part of the cost on Medicare) without a current referral, even though I’d been on three days of the injections already.

I explained that I’d been in touch 10 days prior to ensure all my ducks were in a row. They explained I couldn’t proceed without a current referral.

I dashed to my GP on my lunch break where I was told that asking for a backdated referral was asking them to break the law. I explained that it wasn’t my fault and that I had done All The Right Things and I’d been seeing the fertility doctor the whole time so really it was just a renewal and that my dad was dying and that I really needed to keep going with this round because I really needed to have a baby so my dad could meet my child or I would never be able to live with myself and could they please just write me a referral dated two days prior?

I was turned away.

I was frantic. I called one of my best friends whose father was a retired doctor at the Children’s Hospital at Westmead. I heard the pain in his voice when he explained that they so badly wanted to help but he couldn’t because being the referring doctor meant that all correspondence would be sent to him and that if there was any complications it would be an issue.

I dried my eyes in a meeting room and sat back at my desk and interacted with my team like everything was fine.

I wanted to scream at the top of my lungs at the utter indignity that not only could my body not do what should have come naturally and what I so desperately wanted it to do on its own, but that medically I couldn’t do it either even though I followed all the rules. I’d done everything right and still I was denied the chance to have a baby before my father might die.

I went to meetings like everything was fine. I so desperately wanted to get up and leave – but it wasn’t physically where I was I wanted to get away from – it was my life.

I well and truly didn’t want to be me anymore.

But I pretended everything was fine.

Following that loss our fertility doctor advised we do a few things. I started taking her list of supplements which have research behind them to indicate they might aid in improving egg quality.

She also said she felt it was time for the laparoscopy, to get in there and see what’s going on…and she suggested we might like to see the fertility clinic’s in-house therapist.

Rich and I went together for a therapy session.

We discussed the fact that I felt Rich’s optimism meant he wasn’t facing the reality. Rich explained his positivity was an attempt to lift me up.

“How heavy is this jug of water?” the therapist asked me.

“Uh. Um, well it looks like about 500ml, so, half a kilo?,” I said.

“It depends how long you’ve been holding it.”

She explained that the jug was the weight of what we’re going through and that I have been holding it with my arm out for a while now. I told her that I don’t really share what’s going on in my head, not even with those closest to me, because…well, I just never have. I deal with pain on my own. Because I don’t want to be burdensome and also because I feel deep shame.

She explained that what I was carrying was getting too heavy.

“Give it to Rich to hold. Lighten the load. Put it down for a few months and then pick it up again.”

It was a very helpful session.

I also had the laparoscopy operation.

I had the surgery on a Saturday and had the coming five days off work. I’d told my boss I’d be back in a few days but was glad I had the full week in the end.

Recovery isn’t too bad, mostly just bloating around the abdomen and tenderness near the incisions, but dressing for the office would have been difficult. The most unexpected part is very painful shoulders – a result of the gas leaving your body which they use to blow up your midsection to get to all the organs.

The surgeon, a colleague of my fertility doctor, found three things.

My uterus was an unusual shape. This meant it was possible there wasn’t enough blood supply getting to where the embryos would implant, resulting in miscarriage. He made two incisions on either side to essentially reshape my uterus.

I had what he referred to as ‘high immunity’ in my uterus. Commonly known as ‘natural killer cells’, the purpose of these cells is to protect the womb and detect foreign substances, but in higher levels the cells can also kill a healthy developing embryo. Of the range they deem risky, I was somewhere in the middle. My fertility doctor and the surgeon have different views on natural killer cells. The surgeon explained that if I were his fertility patient he would put me on immune-suppressing drugs. My doctor feels those drugs are too risky and there’s not enough research in the area yet*.

I had widespread endometriosis. It was classed as ‘mild’, stage 2, but it was in many places. He was able to remove a large percentage if it. I did not have PCOS, I had polycystic ovaries, which is different.

I was relieved that my suspicions of endo were finally confirmed and frustrated that I’d been misdiagnosed a decade earlier and that despite voicing my feelings, I was dismissed.

Through a project I had been doing at HuffPost at the time, No Two Women (a content series on women’s reproductive health), I’d already learned a lot about endometriosis.

I learned that the stage of a diagnosis had no bearing on the associated pain. Someone with stage 4 might experience little to no pain, while someone with a mild diagnosis of the chronic disease might find it debilitating every single day.

I also learned that removing endometriosis through surgery does not always ‘fix’ the pain. This was the case for me.

I am hyper aware I’m very lucky with the cards I’ve been dealt with regards to endometriosis. The disease is not debilitating throughout the month – although there is mild (to sometimes moderate) pain I am able to function normally. When I get my period it’s a different story, but that severe pain lasts 24-36 hours.

What is difficult though, is the anxiety that comes with trying to plan a busy life around pain. You don’t just track your period for fertility reasons, it’s so you can crosscheck it with your diary to try and avoid having to cancel important meetings or events because you’re bedridden. Although the pain isn’t constant, the anxiety is, because you know it’s just 28 days away again – at best.

I find it frustrating to observe ‘healthy’ people taking sick days because they are feeling tired or can’t be bothered, yet they still come to the office when they have a cold. What they don’t understand (besides their own privilege) is that people with chronic illness fear getting ‘regular sick’ – like catching a cold or the flu – because they know they’re going to need every single one of their sick days to manage pain and other symptoms.

Like I say, I’m lucky. My endometriosis, for the most part, does not affect my every day…though the effect on my fertility was still unknown.

*A reminder that I respectfully request you refrain from offering medical or treatment advice. I am aware of The Bondi Protocol and the like. 

Prior to this pregnancy I had no emotional connection with the process. I wasn’t yearning to be a mother, I just wanted to get it done. I felt impatient. I felt frustrated that I was unable to control this aspect of our life – that I was unable to plan it into fruition – but it wasn’t an emotionally longing.

Until now.

My invisible friends in the forums of despair – one way dormant conversations I read off a screen – told me that I would be very fertile in the months following a D&C.

And so we tried for two more months. I tried every day to fix it. I did All The Right Things. I had fertility acupuncture. I drank the Chinese herbs that tasted like bin juice. I had kinesiology to unblock the ‘I don’t want kids’ narrative I used to tell myself.

I couldn’t fix it.

A few months back when we had found out we were pregnant Jetstar was having a sale on flights to Hawaii, so we’d booked a trip for our babymoon. I became obsessed with being pregnant again for that trip. There was no way I was going to Hawaii not pregnant.

We went back to the fertility doctor.

She talked us through our options at that point. I could have the laparoscopy to diagnose (and hopefully remove) suspected endometriosis, or we could try a round of IVF first. Many women with endometriosis need reproductive assistance to fall pregnant anyway, so we could potentially cut to the chase without having to have surgery.

(can we just pause for a minute here to marvel at the insanity wrapped in the very sobering reality that IVF might be considered a more favourable option because endometriosis is so difficult to diagnose, let alone treat? I’d bet my life that if endo wasn’t a gendered chronic disease we’d have a much easier diagnosis than surgery. Decades ago. Anyway.)

I really didn’t want to do IVF, but I also really didn’t want to have surgery. Or surgery and IVF. We’d had friends who had done IVF and although it meant a few weeks of hell and a decent chunk of money, it was a means to an end. It meant we got our baby.

We started IVF.

The stimulated cycle, the first part of the process, lasts around two weeks. It begins the day after you get your period, at which point you go into the clinic to have a blood test and collect your medication.

Medication comes by way of lots of syringes, in my case housed in a bright blue cooler-bag with abstract circles on it – I assumed they are supposed to represent eggs – which is about as discreet to carry back to work as having leprosy.

In the cooler bag is several boxes of daily injections – for me it was one for the first few days and then two daily – as well as a special drug called a trigger. The trigger is self-administered around the time you’d ovulate, exactly 36 hours before the eggs are collected. I cleared a whole shelf in our fridge to make room for the loot.

I loved doing the injections. I lived for it. They made me feel like I could be somewhat useful in a process I couldn’t otherwise control.

In addition to the needles you’re at the clinic every second morning, on average, for bloods and an internal ultrasound to measure and count the amount of follicles growing on your ovaries. If you’ve ever experienced IVF you’ll know feeling of having a blood test, seeing your insides on a monitor and taking a muesli bar for the road, all before 7.30am.

Overall I was fine. I felt slightly more emotional than normal throughout the two week process but having bad periods and PMS anyway, it wasn’t so bad. Plus it was temporary – it was a means to our baby.

The only time I got a little upset was when the clinic called a few days before trigger tell me my hormone levels were too high for a fresh embryo transfer – it wasn’t safe for my health or the embryo – so instead of putting one of my fresh embryos in five days after collection they’d need to be frozen and used next natural cycle (or even the cycle after) once my hormones were at safe levels.

I was perturbed. This threw my plans off by a month, maybe two. But I reasoned with myself that if this delay was our hurdle between us and our baby, we’d jump it. The clinic also explained that the trigger I had in my fridge wasn’t compatible with my hormone levels – it would put me at higher risk of hyperstimulation – and so I dropped by the clinic to collect a different trigger drug.

A few days later walking from the carpark to the clinic I was acutely aware of the size and weight of my ovaries – it felt like I had a boccee ball on either side of my uterus.

You can either have a general anaesthetic for egg collection or be awake and have pain medication through an IV. I chose to be awake.

With Rich in a chair by my side I lay on a bed in theatre with my legs in stirrups. My fertility doctor used a whopping big needle in and through the walls of my vagina to reach the follicles on my ovaries so she could extract the eggs.

A scientist – known as an embryologist – receives the eggs through a tube, one by one, and checks them for maturity. We had 12 eggs.

12 eggs! A lovely number. We only want one baby, I thought, and so we will donate the rest of our embryos to science.

Now it was Rich’s turn. He left with a nurse to give a semen sample while I ate raisin toast in recovery.

From that point on our work was done – it was time for the scientists to pour Rich’s sperm on my eggs so they could get to work.

(All those stock IVF images you see of a sperm being injected into an egg is actually an additional process called ICSI, but for the most part strong sperm doesn’t need injecting – it’ll wriggle in there on it’s own).

12 eggs! Happy days.

I don’t really remember the car ride from the obstetrician but I know I would have called mum and I know she would have cried.

I didn’t cry.

When we got home I went to my safe space – the bath – and in there I sent a text to my editor at the time, Tory. Rather matter of factly I explained that I was 9 weeks pregnant but that my baby was measuring small and there was no heartbeat and that most likely my baby was dead and could I please have Thursday afternoon off to go for a scan?

“Take as much time as you need, but Leigh, this isn’t a small thing. Don’t make the mistake of pretending this is no biggie. We’ll take care of whatever you need work-wise.”

(From that point on Tory – who knew firsthand the hell of infertility – would become such a comforting source of both information and understanding. I’ll always be thankful I had a boss in my corner in those coming months who *knew* and I didn’t ever have to say anything.)

I read Tory’s words a few times over and at that point I went from numb to feeling my heart catch up with my head. I got out of the bath and found Rich in the kitchen. The tears ran down my cheeks and he held me.

We stood like that in the kitchen for a very long time.

I ended up working the two days between Monday and Thursday from home. On the Tuesday Rich went into work to tie up a few loose ends before coming home to be with me. When he got back he said “I cried when I told my boss,” and it was at that moment I remembered this was his baby and his pain, too.

He fed and watered me while I worked on auto-pilot those few days.

He gently suggested I take a shower.

I knew what had happened and I knew the outcome and still I ran the scenario over in my head, on a continual loop, where maybe the embryo implanted really late, or maybe I entered the dates in Clue wrong. I tried so hard to not let hope in – to fight it away with logic and facts – but hope is a weed.

Then I Googled.

“9 weeks no heartbeat late implantation”

It was then I discovered the forums. Dormant chatrooms full of acronyms and desperation and exceptions to the statistics. Threads from 2009 and 2011 full of women hurting. Women bragging. Of stories and questions and hope. Of despair.

These forums are a graveyard.

They made me feel a less lonely.

The scan on Thursday afternoon confirmed our baby’s fate – I had had a missed miscarriage – which is when you’ve lost the baby but have not yet started to bleed.

The obstetrician explained the three options we had. We could wait it out and I’d eventually miscarry naturally – a blood test could tell us roughly when that would start. I could take some pills which would bring on the miscarriage in the next 24 hours. Or I could have a dilation and curettage (D&C), where they put you under general anaesthetic while they dilate the cervix to remove the contents of the uterus.

I opted for the D&C, and as the obstetrician gave us instructions of where to meet her that evening at the hospital so she could perform the procedure (on her day off) I felt so much comfort from her sincerity and tact. I was so grateful. This is a conversation she has often, likely weekly, yet she made me feel safe and like my baby mattered.

My physical recovery from the D&C was easy, just some cramping and blood – hardest part for me was that I wasn’t allowed in my safe space for 3 days – no baths.

But mentally, it’s was really hard to be gentle with myself at the very time I needed it.

I knew logically and factually that stress can’t cause miscarriage and that it was overwhelmingly likely to be a chromosome abnormality.

Yet my internal dialog questioned getting the flu shot. Did I kill my baby?

My reaction to that text message. Did that kill my baby?

I switched to natural products right way and didn’t colour my hair but I still had unlit scented candles in the house.

I killed my baby.

I was struck by how profound the grief of miscarriage was. Although based on a life event with a short and clear start and finish, it doesn’t leave you. The grief goes with you to Woolies. It sits with you in boardroom meetings. It’s silently in you, everywhere.