Leanne was having her fringe cut when she was offered fertility drugs. It was leftover stock from her hairdresser’s treatment and she was giving it to Leanne for free on condition that she dispose of the packaging, as it was labelled with the hairdresser’s name and address. Leanne accepted the drugs – it would save months on NHS waiting lists.
A couple of weeks later, Leanne began taking the hormones that would stimulate her ovaries. There was no doctor overseeing the process, no scan or blood test, so Leanne had no idea whether her body was responding correctly. Instead of medical supervision, she followed the advice of several women in a fertility forum. When the pills gave her vertigo, it was these strangers who advised that she should take them at night “so you sleep through the worst of the side-effects”.
“I bought everything the women in the forums told me to: the supplements, the teas, the acupuncturist.” After more than five years of failed fertility treatments, she spent untold hours in these unregulated groups looking for support, advice and hope. “They became my doctor, my grief counsellor, my friend,” Leanne says. “They were my secret club.” But the drugs didn’t work. “I regret every minute I wasted in the forums,” Leanne says now. “My family and friends wanted to support me, yet, as long as I was online, I wasn’t seeking their real-life help.”
Infertility is common: one in seven couples in the UK experience it, with 12% of women aged 25-34 and 17.7% of women aged 35-44 saying they have unsuccessfully tried to get pregnant. After two years of trying for a second child, I recently underwent three rounds of IVF. The first ended in a chemical pregnancy (an early miscarriage, occurring within the first few weeks); on the second, we banked the embryos as insurance; and on the third round in October 2020, I became pregnant with twins, but lost one. I now have a three-month-old baby girl.
Despite the number of people it affects, infertility is often called “the silent struggle”. Discussing it with fertile friends is difficult, especially when it feels as if everyone around you is falling pregnant by sex alone. It creates a divide, and you risk being on the receiving end of lots of well-meaning but unhelpful, even hurtful, advice: “Just relax”, say, or “Maybe it’s just not meant to be”. I rarely found comfort in talking about it, unless it was with someone who had had a similar experience.
So, like many women, I sought answers and solace in online message boards, niche Facebook groups and closed communities. I began by poring over photos of other women’s pregnancy tests; reading when they last had sex and in what position. I knew their partners’ sperm counts; I noted tips such as how to use a mooncup as a fertility aid. As I went through the different stages of my quest to get pregnant, I left behind the TTC (“trying to conceive”) forums and moved on to closed Facebook groups, from IVF Support UK to Low Ovarian Reserve Support Group to IVF Babies Due Date Group.
I started to lose hours to these forums. I realised I’d hit a low when I found myself scrolling through pictures of other women’s bloodstained knickers as I tried to convince myself that my period might be implantation bleeding. These images are uploaded in the wishful hope that other women will respond positively. If you keep searching, you will eventually find the answer you want.
I became more than just a lurker: I posted, I replied, I uploaded photos of my own pregnancy tests. Finding women who were happy to discuss in minute detail how diluted your urine should be when taking a test was a relief – there were people as obsessed as I was and they made me feel less alone.
“It’s a compulsion,” says Gabriella Griffith, co-host of the Big Fat Negative podcast. “I’ve gone online at 2am, 4am, 6am. Inevitably you will land on a Mumsnet thread where one woman had five negative tests and was still pregnant.” Griffith and her husband were diagnosed with male factor infertility. “When you’re trying, you’ll do anything to hold on to a glimpse of hope, including handing over your sanity to a thread last active 10 years ago.” In April 2019, they conceived their son after one round of IVF with ICSI (where the sperm is injected into the egg before being transferred to the womb).
I’ve experienced the good side of these forums: through reading other women’s stories I’ve been able to understand the reality of fertility treatment. In a way, it is the fertility education I never received at school. People are turning to these online groups not just for information, however, but also for emotional support. When I was at my most anxious, on embryo transfer day, I found “transfer buddies” (women who had their treatment on the same day) to compare symptoms with.
A lot of the detailed information contained in these forums isn’t readily available on mainstream medical sites. The HFEA (Human Fertilisation and Embryology Authority) website is beginning to cover more, but still doesn’t include basic information such as an expected timeline of fertility treatment. While women are starting to demand more transparency, there’s still a lot of opaqueness to navigate, including whether you qualify for funding. “We receive almost no education on how to use our fertility,” says Dr Anita Mitra, an obstetrics and gynaecological consultant and author of The Gynae Geek. “Sadly, many women report only feeling well informed about how fertility works because they had been through infertility and IVF.” It was in the IVF forums that I learned about ovarian reserve and its implications on ease of conceiving.
But information found in forums isn’t always reliable. These groups are unregulated, prescription drugs are traded, and personal experience is touted as medical advice. Five minutes after visiting my fertility doctor, I found myself on Facebook questioning her treatment plan. Why did I put my trust in strangers instead of an expert clinician? “It’s easy to fall down the rabbit hole of forums written by people who don’t have the right qualifications,” Mitra says. “The anecdotal experiences of others can be helpful, but everyone’s medical history and health is different, and what is right for one person may not be right for another.”
“The volume of opinions online can leave people overwhelmed,” Griffith says. “It would be impossible to police – the platforms would have to have a doctor check every single post – so we need to exercise caution ourselves.”
It’s difficult to stand back while commentators give other women false hope. One 45-year-old member asked if she had more chance with her own eggs or a donor’s, adding that she could only afford one round of IVF. To watch many women answer “definitely try with your own first” was hard. The live birthrates of an IVF cycle with a woman’s own eggs at age 40-44 is 4.7%, for a woman 45 or over it is likely to be even lower, while for a donor egg cycle it is more than 55%. I commented with the statistics and relevant scientific studies, and never got a reply.
As my chemical pregnancy played out, my need for the forums became debilitating. There were weeks when my screen time rocketed to more than eight hours a day. I charted the rise and fall of my hCG pregnancy hormone by peeing on sticks every morning. I would line up the tests, photograph them and then compare the density of my two pink lines with other women’s tests.
The women in the forum colluded with me against the evidence of my own body; reassuring me, they told me I was pregnant. But after 10 days I started to bleed. I went to my clinic – I was indisputably no longer pregnant.
In such a fraught environment, it’s not uncommon for contributors to become divisive. An impossible hierarchy of grief is imposed based on how long somebody has been trying to conceive, or how many failed rounds of IVF they have experienced. “As I’m currently experiencing secondary infertility [infertility after already having a child], I feel precluded from joining some TTC conversations,” Kate Meakin tells me. She had her first son via IVF and had six miscarriages while trying for her second child, now six months old, also conceived with IVF. “Sometimes I don’t feel my pain is legitimised. But having a son doesn’t mean I don’t feel the grief of a miscarriage.”
Michelle Kennedy launched the free app Peanut TTC, to connect women who were struggling to find a community. “We looked at how we could understand the difference between the woman trying for six months and the woman who has been trying for six years,” Kennedy says. “We wanted both women to be able to express ‘I am trying’.” Peanut allows women to display how long they have been trying to conceive, alongside details such as the cause of their infertility, allowing women to find their online counterparts.
But others are leaving closed forums. Keeley Dwight liveblogged many of her nine IVF cycles on Instagram (@_tryingtobeamum_). This is unusual – people normally only share their struggle publicly once they have been successful. She has experienced the support of the online TTC community, but she has also seen the less helpful side – a tendency for certain forum members to stop following those who have become pregnant. “You can’t profess to be this comforting and supportive club and then extradite people the moment they get a positive test,” she says. Dwight recently had a son via a donor egg.
But other than with a positive test, how can women escape the anxiety cave of the fertility forum? In 2020, Natasha R went through three IVF transfers, and each failed. In the summer, as she celebrated her 40th birthday, she was surprised to discover she had fallen pregnant naturally. “I miscarried six weeks later and was not prepared for the turmoil.” She turned to the forums. “They took over my life.”
But then something shifted. “I was having a bad day and opened my laptop as usual, but my husband said, ‘The more time you spend in those groups, the more time you take away from you and me processing this together.’” They had a cathartic conversation where he said that he wanted to be with her whether they could have a child or not, and to be part of the planning for any future treatment. “No woman in the forum could have given me the relief that chatting to my husband brought.”
Throughout my pregnancy, l remained in the forums. They were a place to go at 2am to ask how to spot the difference between regular discharge and a mucus plug (sorry, TMI). Even post-birth I’m still a member of online groups such as “IVF miracles”, but I am no longer addicted, perhaps because I don’t need them in the way that I did when I wasn’t conceiving. I hope we can make conversations about infertility more public. Driving them underground means they stay there, unchecked, and encourage potentially damaging behaviour.
As Leanne learned after years of failed treatments: “The thing about fertility forums is that they perpetuate hope – and that is exhausting. They don’t let you get off the fertility treadmill, and they don’t let you move on and grieve.”
