Either I have an undiagnosed problem that no one can find, or I have really bad luck.

This essay is the first in a two-part series on fertility. Tomorrow: why is fertility treatment so expensive in New Zealand?

As told to Madeleine Chapman.

I always wanted to be a mum. Even as a child, I found myself looking after other children and knew, somewhere in the back of my mind, that I’d have my own one day. It was the classic (gendered) dream: a husband, a picket fence and two children.

So it was quite a shock when a doctor, almost in passing, told me that I would struggle to conceive. I was 18 and in good health. Doctors hadn’t been able to figure out why I hadn’t got my period yet. This doctor was no different but it didn’t stop her from blithely declaring: “you’re going to really struggle to have children.” So while all of my friends were busy worrying about accidentally getting pregnant, I found myself contemplating how I would feel if I couldn’t get pregnant at all.

As a teenager, I never figured it out, but it cemented in me the wish to have them someday. By my early 20s, I realised that the doctor never gave a reason for her statement. She didn’t do any tests and it never came up again.

Instead, I lived a full life in my 20s. I travelled overseas and lived in Europe for a stretch before returning to New Zealand. I dated and had relationships and always knew that with the right partner, the children would follow. Once I turned 25, I was ready for it.

Even in dating, I was preparing for children in the most pragmatic way. For a while in my mid-20s I was dating a guy who, let’s say, wasn’t really keen to hold down a job. I knew he’d be dead weight financially if we had kids, so I hustled to buy a house on my own before I was really financially ready, one that could have renters in it while I lived downstairs and then could eventually be a family home. If I was going to have kids I was going to make sure I was financially sorted and could provide well for them.

When I was 28, I met a woman through one of my hobbies who was trying to conceive as a single person, or as it’s more commonly known, a single mother by choice. She was on the donor waiting list – which I didn’t realise was years long – and I found her story empowering. She knew she wanted children and was getting older and just decided to go it alone. I was in a long-term relationship at the time, and when it ended a year later, I wondered if I’d need to do what my friend did.

But still I looked for a partner. I dated another guy for two years and when that ended I was 32 and had to make some big decisions. I put myself on the sperm donor waiting list because it would take three years to get to the top and in three years I’d be 35 – in the meantime I’d continue with “plan A”, which was to find a partner.

For the appointment with Fertility Associates to join the donor waiting list, I did an AMH blood test, which is used to determine how many eggs you have left. My AMH results came back fabulous. So fabulous that the fertility specialist told me not to worry at all about my future fertility. Looking back, I can’t believe she was so confident, given how little information we had (spoiler: AMH tests egg quantity, not quality). If she hadn’t been so sure, I’d have started trying to conceive earlier.

I had my fabulous fertility results and three years to find a partner but if I’m being very honest with myself, I was becoming increasingly dubious and giving fewer and fewer people a real chance. I felt that the dating scene in my city was dire.

As the three years passed by, I learned more about donor conception, and about the downsides of using anonymous donors, or ones that are anonymous until the kid is 18 – lack of medical history, a sense of disconnect for the child. I realised if I was going to use a donor (which felt increasingly likely) I wanted to know them. I think that the “right” way to do this is probably different for every family, but personally felt that I would be doing my kid dirty before they’d even been conceived.

My donor is a friend, and we did it as “officially” as we could, with a contract from a specialist lawyer, counselling and everything. We get along great, and his partner supports his donation. I really fundamentally believe that having a child through donation from a person who is not my partner, but with whom I have a stable, albeit “non-traditional” relationship, is so much healthier than if I ended up jumping into a potentially volatile relationship just to have children.

We tried DIY for six months. DIY (formally known as at-home insemination, informally known as turkey basting) involves the donor supplying sperm during the ovulation period, which is then inserted with a rounded syringe. When it was clear DIY wasn’t working, I went to the fertility clinic again, where the doctor told me to try IUI (intra-uterine insemination, basically a beefed up version of DIY). I don’t know why I agreed when I had tried myself for six months but I think maybe the doctor didn’t take my at-home attempts seriously. I’m a scientist by training, though, and I trusted that I’d timed correctly.

But the doctor told me to do IUI so I did IUI. It didn’t work. Each round costs about $3,000, unless you’re a single woman or using a sperm donor for other reasons, in which case there’s an additional “sperm donor addition” fee of $1,800 dollars per use. So my two rounds of IUI cost $10,000, with a <20% chance of success. I ran the calculations and decided that IVF was more cost-effective, even though it’s a much larger up-front cost.

One of the first pieces of information sent to me was an invoice ($20,710 for one cycle). I asked about doctors’ appointments included in this bill, because I was interested in when I could ask medical questions for my own reassurance. This insane quantity of money did not include a meeting with my doctor. In fact, in all my dealings with the fertility clinic, there has been no single person across my care. Nurses run me through my medication and embryologists call to discuss each round’s results but it’s a different person each time so you don’t really build rapport. The only time I speak to a doctor in person is moments before the egg extraction, which is an operation that makes me anxious, so my mind is not on details.

The bill also included $3,235 for a procedure called intracytoplasmic sperm injection (ICSI), which had never been discussed with me by anyone at the clinic. ICSI is where they inject sperm into an egg instead of just putting all the gametes in one petri dish together and letting them find each other (conventional IVF). This is an “optional add-on” to IVF, according to the clinic’s website, because it’s been shown to be helpful when there is low fertility in the male partner (which was not the case for my donor). Long story short, it would almost certainly have been a total waste of money in my case, according to all large recent studies in the peer-reviewed literature.

So, I asked whether I could get this procedure removed from my bill. In a phone call with a nurse, I was initially told that I had to do it “because it is a standard protocol”. When I pushed her on that, she reluctantly said she’d ask the doctor. A day later, I had a phone call with the doctor who discouraged me from conventional IVF but then confirmed that I didn’t have to do ICSI if I didn’t want to.

I felt like I had been upsold during one of the most stressful periods of my life. If I didn’t have a PhD in biology and a lot of faith in my ability to assess the credibility of scientific literature, I would never have had the courage to push back on a specialist in a position of authority and would’ve just handed them the $3,235. I wonder how many people out there have paid for it unnecessarily. I’ve now done three rounds of IVF, so that would’ve been a total extra cost of $9,700 for a procedure with no evidence of benefit for me.

Turns out, I have heaps of eggs but they’re mostly shit. I think that’s why I wasn’t able to conceive using lower tech methods. My first round of IVF had good numbers – they got 17 eggs and 14 fertilised. I had 14 fertilised eggs but only two survived to day five, which is when implantation happens.That’s a very, very poor result.

For the second round of IVF, I opted to genetically test the embryos. Because there’s a clinical shortage for embryo testing, they put me on the pill and then took me off again to trigger my period when they expected to have capacity. My hormones have been cooked in every direction since this whole process began. Sometimes I do something uncharacteristic at work and I just have to apologise. I can’t explain that it’s because I’m on 20 times the normal amount of estrogen which then collapses in this huge emotional tidal wave.

My second round, on the face of it, was extremely successful. A whole 11 embryos survived to day five. On that day I got a call from the embryologist to tell me my results. She then asked how many embryos I wanted to test out of the 11. A straightforward question, except the test costs $1,700 per embryo and I’d never even considered that there could be 11. Did I want to pay an extra $18,000 on top of the $20,000 for the IVF round to test all 11, or just some? I asked her if I could have some time to think and she sighed. Fifteen minutes, she said. It’s time sensitive.

I got off the phone and hurriedly assessed my finances, my future and my risk appetite. After exactly 15 minutes, I sent her a message. It was a $10,000 decision. She didn’t reply for more than two hours, and said she was “just getting to them now”. I got that decision wrong, by the way, and later had to pay an extra two grand (on top of the testing fee) to defrost and refreeze the remaining embryos in order to test them too.

One of the really hard things about going through fertility treatment is that you’re paying a premium price for what feels like a premium product, and it’s marketed as such. The brochures are all glossy and the clinic looks more like a salon than a doctors’ clinic. But when I’m there, I feel like I’m meat on a conveyor belt. I feel that decisions concerning my care centre around convenience to the clinic. I don’t even get any choice in appointment times. It doesn’t matter whether I have to reschedule a work meeting with clients or government officials – if that’s the time that works for the clinic then it’s “you jump, I jump, Jack”.

Many medical decisions are never even explained to me. Most choices that IVF patients overseas are discussing online, like ICSI, are simply made for me, and it’s up to me to question it if I disagree. I don’t think it’s a function of people trying to do me dirty, and most of the people I’ve dealt with in person have been lovely, but it’s a system that works for them as a business. And it works because it’s an industry clientele that’s entirely desperate people.

I have no options for fertility treatment. Fertility Associates is the one provider in my area, and it’s the same for most of the country. I can’t help but wonder if the cost, the service, or both would suddenly improve if I had the option of going to another clinic. I already felt like I had limited choices when I couldn’t conceive naturally, but not even being able to choose a provider when I’m spending tens of thousands of dollars is just depressing.

At the end of my second round of IVF, I had two failed transfers. That’s when they stick the embryo that they made in the lab back into your womb. The first one was unsuccessful and the second one produced a positive pregnancy test but didn’t make it. That was devastating for me after all it had taken to get to that point. About 80% of women are successful with two transfers of genetically normal embryos. The fact that I wasn’t is either bad luck or there’s something else wrong. But after a battery of tests, they haven’t found anything.

I’m now on round three and have spent approximately $100,000. I never thought it would cost this much. I knew it was expensive but figured about $40,000 would be the total. Not many people have $100,000 to spend, I know that. There are so many people who have trouble conceiving, take one look at the cost of fertility treatment, and have to accept that they’ll never have children. I hate the implications for our society – that this very well-established tech is confined to the rich and that the poor and much of the middle class can’t have these important dreams come true. And these broken market forces that have created a virtual monopoly are really contributing to that.

There is government funding but I know lots of people who aren’t covered. I have a friend who couldn’t try because of the money and years down the line you can still hear the sadness in her voice. I know I’m lucky, but I’m currently using my future to pay for this. My retirement savings are gone and I’m not expecting any substantial inheritance. I live frugally in a converted garage and had planned to reduce my hours as a single mum but won’t be able to now that those savings have been spent. Eventually I’ll hit a bottom line and will just have to give up.

The past year has been horrible. There’s the money, yes, but also the hormones are ridiculous. They’ve made me more anxious and unable to enjoy things I used to. I barely trust my judgement, ironically during a period where I’m making massive life decisions. My beautiful, full life feels like a distant dream. I can’t make myself focus on my work which I normally love, I’ve had to step back from many of my hobbies and all I think about is my fertility treatment. It sucks that in the middle of all that, in the bottom of my heart, I feel like I’m the only one who’s fully invested in my care and outcomes. Mostly I just feel depressed about it now.

But I still have hope that it will work. This one unfortunate thing in my life has completely reshuffled the deck for me, but I believe if there’s nothing wrong with my uterus, and I just had bad luck until now with the transfers, then this third IVF round will almost certainly be the end of it.

I have three genetically normal embryos frozen as I am planning ahead for a second child. Under normal circumstances, that would be considered a 95% chance of having a child. The chances of two children from that are lower. So depending on what happens in this round, and if I can’t afford any more rounds after it, I will try with those three embryos for just the one child. And at that point, I’ll figure out my future. It breaks my heart to think my child wouldn’t have a sibling. I’ve always been very close with my brothers. My family is a very important part of my life and I’d give up a lot to give that to my child.

I have to believe it will happen. The desire to have children has been a defining feature of my life, but I would never have chosen this. I wouldn’t choose this for anyone.

Response from Fertility Associates CEO, Alex Price.

IVF treatment can be difficult, we appreciate that outcomes are uncertain and the process is complex medically and has a number of regulatory requirements around it. This is particularly the case in donor treatment. Throughout this, the team do strive for empathetic communication.

During treatment with us you will deal with a number of individuals, depending on their area of expertise, embryologists and nurses being two key groups. The team involved in your care has access to your medical record so are up to speed on your situation. We also run a 7-day-a-week clinic across the year and so while we do try and provide personnel continuity this is not always possible.

ICSI is not a default procedure and in fact is used in only around half of our IVF patient cases. It is discussed with patients ahead of time and patients will consent, or not, to this procedure. Generally speaking, most patients have considered embryo testing well before the biopsy stage, so it is usually relatively straightforward to confirm the procedure. Throughout IVF our team does endeavour to assess how comfortable the patient is with treatment options and we do obtain written consent for treatment. They will look for cues such as additional questioning or concerns from the patient and address these.

Our website has full information on costs and the background to treatment.