If it works, it’s a medical miracle. But, says Brigid Moss, we need to know the warts-and-all truth about fertility treatment.
If you wanted to design the most stressful life experience possible, you might come up with fertility treatment. It’s like a cruel board game – say, snakes and ladders – but the board is covered mostly in snakes. The chance of winning is low – around 27 per cent per treatment – and the stakes are life-changingly high, because there are only two outcomes. If you win you end up with a baby and your dream of becoming a parent comes true. But if you lose, you have to grieve for that dream and rethink your whole future.
I know this because I’ve been there – and I was one of the lucky ones. After four years of trying naturally and fertility investigations, our first round of IVF had the best outcome: our son Patrick. But when he was three, we had a frozen embryo transfer that didn’t work, and finally an IVF cycle that ended in a miscarriage when I was 15 weeks pregnant. After that, we couldn’t carry on, not only because of the financial burden, but also because I was utterly broken. It took at least a year, maybe even three, for me to feel whole again.
In the news, you hear mostly about the money aspect of IVF – each private cycle costs £3,000 to £5,000, and that’s without all the possible add-ons. A survey by the charity Fertility Network showed that the average spend on investigations and treatment is £11,378, while ten per cent of those surveyed had spent more than £30,000. You also hear lots of stories about questionable practices – most recently about IVF clinics offering unproven ‘add-ons’ to treatment.
What you don’t hear about is the emotional fallout; about how going through IVF can feel like driving a truck through your life and your relationship. ‘This side of IVF is often downplayed,’ says Professor Jacky Boivin, a psychologist at Cardiff University who specialises in fertility. In the Fertility Network survey, 70 per cent of couples said it had put a strain on their relationship – and 15 per cent had split up as a result. Having injection marks on your belly and massive hormonal spikes, as well as sex becoming associated with failure to conceive, is not great for your love life. And it takes over everything. ‘The desire to become a parent can be an all-consuming, primal subconscious drive,’ says fertility counsellor Tracey Sainsbury, co-author of Making Friends with Your Fertility. ‘It can feel as though it’s the measure of your success and validation as a woman, as a human being. People can routinely think they’re failing if they haven’t achieved parenthood.’
This sounds familiar. Trying to get pregnant consumed six years of my life. It became an obsession. For example, I fixated on having a ‘clean’ diet and gave up alcohol and caffeine. I spent a lot of money on supplements and had to eat ten different vegetables a day – not just as a general aim, I did it religiously. One friend became so obsessed with not consuming toxins that she threw out all her cleaning products and refused to eat anything that had even touched plastic or wasn’t 100 per cent organic.
However, with better support perhaps more people could achieve their dream of having a family. Studies show that the stress of IVF can stop people doing the full amount of cycles they may need in order to conceive. ‘In Australia, for example, where you can have six free cycles, people do just two on average,’ says Professor Boivin. ‘When we ask people why they stopped, they say it’s because the psychological side of treatment is too demanding, too stressful.’
In January, clinics were told they need to offer better emotional support. Patient feedback prompted the Human Fertilisation and Embryology Authority, the body that regulates the fertility industry, to update its code of practice to include mandatory counselling and emotional care for all patients.
Currently, emotional support varies from clinic to clinic. My experience was one of frustration and confusion: having to wait on the stairs for the daily appointments; seeing a different doctor each time, waiting ages to be called back with instructions of what dose of hormones to inject.
And there are horror stories: Kate had a positive pregnancy test but at a six-week scan, while she was sitting in a corridor between treatment rooms, she was told that her baby hadn’t made it. ‘There were happy smiling couples going past me, clutching their healthy scans. There wasn’t even a box of tissues, let alone a private area where I could sit to process information,’ she says.
One issue is that, just like marriage, people go into IVF expecting it to work. The sheen of medical science makes it seem like the answer, so when science fails it’s understandably difficult to process. People who have been through it always describe it as a ‘rollercoaster’. At every appointment there’s a possibility of bad news – and you have zero control over any of it. You may find out you don’t have enough eggs, or low or no sperm. Or you have a condition that needs attention before you can have IVF – perhaps cysts on your ovaries, which halted my first cycle, or polyps in your womb.
The regime is physically tough. You have to learn how to inject yourself with hormones, sometimes three to four times a day. It’s also pretty grim on a practical level – for example, if you’re at work you have to sneak off to do those injections in the loos that you share with your colleagues.
Hormonal fluctuations mess around with your mood and stress levels. For me, IVF felt like having a permanent low-level panic attack. From blood tests to scans, every appointment is intrusive. As one woman told me, you get so used to taking off your pants at every appointment, you begin to do it automatically.
Even so, having treatment can feel more positive than what follows after the embryo is implanted: the two-week wait, during which you can do nothing but that until you can take the pregnancy test. My mind would go round and round, searching for a hint of a pregnancy symptom. I bought 50 cheap pregnancy tests on the internet and did three a day (this isn’t advised). Then I bought some more tests at the chemist just in case those ones were faulty. Obsession can do this to you. But the thing with IVF is that, even if the test is positive, the likelihood of a miscarriage is nearly one in four.
After becoming pregnant on her first cycle, Annabel miscarried at ten and a half weeks, something she discovered during her 12-week scan. Now aged 38, after four more cycles she tells me she’s almost certain she won’t undergo IVF again. ‘Every time you do an IVF cycle, you are buying hope. I’m a naturally positive person but nothing prepared me for the overwhelming depth of feeling. My husband and I had to deal with the grief of each failure. It’s cruel.’
It’s not unusual for women and couples to spend many years having IVF. ‘I feel as though it has stolen the past six years of my life,’ says Kat, who is now 18 weeks pregnant. ‘When not in treatment all you want is to be in treatment.’
IVF can take over your life in other, unexpected ways – you can’t plan holidays in case they clash with treatment dates, which in turn depend on your cycle and hormone levels. Treatment can mean two appointments a day, scans and blood tests. Can you take sick days for these or do you have to use up your holiday? Do you tell work you’re having a medical procedure? I was lucky enough to be working for supportive female bosses who I could confide in each time I had IVF, but so many women I interviewed aren’t. Which is why many cut down on or quit work. It’s so stressful, especially if you don’t want to share this kind of personal information,’ says Natalie Silverman, creator of The Fertility Podcast. ‘Normally you wouldn’t say anything suicidal but close enough; I have thought, how can I actually go on if I don’t get pregnant?’
When you feel you’re the only childless person in a sea of Instagram-perfect baby showers, it is isolating. ‘It’s really hard not to feel jealous,’ says Kate. ‘It’s an awful thing to admit to but the more not pregnant you are, the harder it is to hear other people’s good news.’
For those who finish treatment without their longed-for child, it’s a grieving process for a family that won’t happen in the way you imagined. But the good news is that there has been an upswell in support groups. Berenice, who’s 47 and did six cycles of IVF over ten years, started Walk In Our Shoes – a website where people can share stories – and in doing so has been made a World Childless Week Champion. ‘When you find your community, you can find support,’ she says. ‘I’ve made close friends because of failed IVF.’
It’s powerful when people share their stories: each one chips away at the stigma of infertility. Izzy Judd, wife of Harry from the band McFly, has written two books on the subject; her first, Dare to Dream, was a bestseller. The actress Lisa Faulkner, who adopted her daughter after failed IVF, has a memoir, Meant To Be, out this summer. I researched my own book of 22 women’s fertility stories while I was having treatment, and these women, who I interviewed at length, carried me through the grief of my miscarriage.
Fertility support groups of all kinds have multiplied, in person and online, since I did my last round eight years ago. I wish they had been in existence back then; the positivity and support you can now access is so consoling. Connecting people has to be the best thing social media does – look at the hashtags #TTC (trying to conceive), #infertility, #fertility, #ivfcommunity as well as more specific ones, such as #PCOScysters (for those with polycystic ovary syndrome). There are also hashtags for finding others during the most challenging moments: #infertilitysucks and #TTCSOS as well as #2WW [‘two week wait’]. ‘We need each other for the simple reason that other people do not understand,’ says Jem. ‘We have created a new world for ourselves online.’ She organises meet-ups in Leeds, with husbands and partners invited along, too. ‘My husband didn’t want to go, but on the way home he was like a different man. He was saying, “She’s been through this, too” and “They had that as well”. He’s felt a lot better since meeting the other men.’
After 11 unsuccessful rounds of IVF, Jessica Hepburn started Fertility Fest, a programme of arts events that illuminate what IVF is really like and all the ways families are being created in the 21st century. There are events for single mothers, same-sex parents, adoption and fostering, as well as those who are childless not by choice. ‘IVF is misunderstood. It’s not a perfect science,’ she says. ‘You’re likely to be on this journey for five or six years. You need to prepare yourself for that emotionally, physically and financially – so that you can get through it but still have a life.’
She’s right: if people can get a clear picture of what IVF involves, if they can get prepared and connect with others in the same situation, and if clinics do get the support right, perhaps they won’t lose so much in the process of trying to have the family they so desperately desire.
Brigid Moss is the author of IVF: An Emotional Companion, published by Collins at £12.99.