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'My secret IVF group kept me sane - it's therapy'

Three women who found solace in a social media group created to support those going through fertility treatment share their stories with Liadan Hynes

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Orla Galvin from Wexford with her two-year-old son, Rory Corrigan. Photo: Mary Browne

Orla Galvin from Wexford with her two-year-old son, Rory Corrigan. Photo: Mary Browne

Amanda and her husband Dave have struggled to conceive

Amanda and her husband Dave have struggled to conceive

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Orla Galvin from Wexford with her two-year-old son, Rory Corrigan. Photo: Mary Browne

After discovering she had a depleted egg reserve, and would not be able to conceive naturally, Orla Galvin (40) and her husband embarked on fertility treatment, eventually welcoming their son Rory, now two. Right from the outset, Orla knew she needed to find others who had been through the same thing.

She started an anonymous blog, posting on Facebook. "It was a way of unloading. Writing it down was therapy. The fact that it was anonymous meant I really could be open." Very quickly, the Wexford woman had a huge response from women also going through in vitro fertilisation (IVF). She felt that all these women should have access to a communal conversation. "So that if I was asleep, or working or away, if you were having a bad day, there was somebody that you could talk to."

So Orla set up a secret Facebook group. (To join, you must contact Orla through her blog, ivfnme.com, and she will then invite you.)

As well as a sense of solidarity in what can be a deeply isolating experience, the group has, Orla reflects, proven to be a good space to think through decisions when a third voice is needed by a couple. "There's a wealth of information shared there," Orla explains. Not everyone in the group is a talker, she adds, some people just read, and that is fine.

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Amanda and her husband Dave have struggled to conceive

Amanda and her husband Dave have struggled to conceive

As well as sharing with the group, Orla began to be more open with her family and friends about what was going on. Rory was conceived through IVF and after the egg transfer, she recalls the difficulty of keeping things to herself. "I just felt like a ticking time bomb. Like I could not hold it in any longer. It was so much, and so stressful, and so upsetting, I just felt I can't cope containing this information. I need to talk and I need support."

She started telling the people around her what she and her husband were going through. "And every person that you told, you felt there's another person putting their arm around me that's going to make this whole thing easier. I just felt 'you know what, just open up. Say it to employers, say it to friends, say it family. And this whole thing will be 10 times easier'. And it absolutely was. It took a huge stress off us."

In the aftermath of her son's birth, Orla still suffered with anxiety that had been with her throughout her pregnancy, and again the group proved helpful. "That anxiety never goes away with an IVF pregnancy. I definitely suffered with it throughout the whole pregnancy. And I think afterwards; there's almost like a post-traumatic stress. That fear, 'OK you're telling me I'm pregnant, I'm 12 weeks, six months, but this could all be taken away from me tomorrow'. And even when they're in your arms, I remember being obsessed with checking Rory's breathing. Most of the girls on the group said they felt the same way. It apparently is quite a normal reaction."

Amanda Knott (29)

Amanda and her husband Dave have been trying to have a baby for four years now. They knew within a year that there were complications; Amada has an issue with her left tube and there are motility issues with Dave's sperm.

They were referred to a fertility clinic in Galway which recommended IVF. It wasn't a huge surprise; the couple had already come to this conclusion themselves. "But when it was finally confirmed it was heartbreaking in the sense that this was our only option," Amanda recalls. "I remember saying to a friend afterwards, 'the hardest part is you never have the experience of getting pregnant naturally, and seeing that positive pregnancy test, without having doctors and science and clinics involved. You're basically in their control'. You kind of lose a sense of yourself in it all."

There's also the crippling financial aspect of IVF, Amanda says, pointing out the lack of state aid. "It's very expensive, which you don't mind, if it was a case that you were guaranteed it was going to work."

Once the couple started IVF last September, Amanda began looking for support groups. "It's something that is not really spoken about. We're open, we tell people, that's the way we are. When we started telling family and friends, it transpired some of them had gone through it."

The Facebook group has provided a much needed source of support for Amanda. "We had an idea of what was involved in IVF. But until we had gone through it, and it failed, we didn't realise the extent of how hard it is. It can be lonely at times, if you don't have anyone. Joining this group, you see other people's perspective, and you realise you're not on your own with this."

Until you go through it, Amanda points out, there is so much about IVF people don't take into account. She describes going in for appointments and trying to make it back in time for work. "Your life is fully on hold," she points out. "You're trying to plan your life around IVF. And then everything is timed around injections."

When it came to their first round, of their four eggs, three were suitable for ICSI (intracytoplasmic sperm injection, where sperm is injected into the egg). "I remember at the time I was feeling so disappointed about that," Amanda says. "So many other people have had a lot more, and you think 'oh god, I feel like a failure, I could have done better, had more eggs'.

"It's such a tense few days, because you're waiting for that phone call first thing in the morning, and you can't really sleep at night," she says of the days before the transfer. Two eggs fertilised, which meant two embryos for transfer. "We were delighted to have got to that stage," Amanda adds. "You come out of the transfer and you're afraid to stand up, or to do something wrong. We were so excited. They say you're pregnant until proven otherwise. So for us we were like 'yes, we've finally gotten here'. We didn't expect it to go as wrong as it did."

Amanda started bleeding on the Sunday, after Tuesday's transfer. "It's horrendous," she recalls now. "I remember feeling 'that's our only hope, all this gone'. And thinking 'what did I do wrong? What went wrong?' My husband was so upset too. The two of us were trying to console each other."

Because she was bleeding so heavily, Amanda was brought for scans in an ante-natal clinic. "All you're surrounded by is pregnant women," she recalls now. "I remember just sitting there going 'this is just torture, it's so unfair'."

Knowing that other people were going through the same thing on the group was hugely helpful at this point, even more so because she could read the eventual success stories. "It gives you that positive vibe to go through it again. That it could work. I felt completely hopeless, but when you're reading other people's stories of success, it gives you that spur just to keep going."

The well-meant but ill-judged comments of those not going through IVF can be particularly painful. "I remember someone turned around and said 'well what's your plan B?' Well at the moment it's like, we don't have a plan B. Of course we've talked about it. We looked at adopting, but it seems to be impossible to adopt in Ireland. Our only option would be to move to England to adopt. That's the thing with people, they don't really realise that if this doesn't work, that might be what you're facing."

The couple point out how much more isolating IVF can be for men, given their natural disinclination to talk about such things. Dave admits he doesn't know any other men going through IVF.

"It was just a very clinical process. And most men out there, we wouldn't come out of the room and not feel a bit ashamed or embarrassed," he says of the initial parts of the IVF process. "You wouldn't go into a group of lads and talk about it. In a way you're on your own, because you think 'if I do talk about this, I'll be ridiculed'."

Sinead Considine (40)

Sinead is 19 weeks pregnant. After two rounds of IVF, she conceived naturally in September. "That was the silver lining in the clouds," she says now. She and her partner started trying for a baby in 2017. She knew very quickly something wasn't right, and in January 2018 began looking for medical help.

It transpired that she had endometriosis, a diagnosis she received after requesting the tests herself. "I used to have what I now know were abnormal periods; I thought it was normal. You always hear of people going through period pain," she recalls now. She had visited a gynaecologist when she was 18, but had been just given pain relief and anti-inflammatories, which she then used to manage the condition for the next 20 years. "I'm so sorry I didn't push it further, but I just didn't know," she says.

Sinead and her partner decided to try IVF in November 2018. Getting started was something of a relief. "I'm a very practical person," Sinead says now. "I don't mind if there's a problem, but I like to be doing something about it."

The couple didn't tell those around them what they were going through. "I just felt like a failure," Sinead explains now. "It was new to me, I just wanted to get on with it privately. I told family when we went for the second round, but you could say to them 'don't be coming to me every second day asking how I am'."

IVF can be hugely isolating, and Sinead explains how she found the Facebook group tremendously helpful. "I found it fantastic. Because you kind of feel like you're in the middle of the sea drowning. I didn't know of anybody else who had been going through IVF. The group is brilliant at pointing you in the right direction. You feel like you're not the only one."

Sinead was a full-time physio for the HSE. Before the couple began trying for a baby, she had also taken on extra private work, two evenings teaching Pilates, so they could build a house. "It was pretty full on, so bit by bit, over the course of the whole journey, I began cutting back on work, eventually dropping the extra work and going down to three days in the HSE."

As there was no identifiable problem bar the endometriosis, she had begun to wonder if it was stress. "Cutting back on work was kind of a last thing to try. I had been to nutritional therapists, I had done reflexology, acupuncture. I just didn't want to give up work. So it was kind of the last thing to take a hit."

On their first round, only one embryo was transferred, as she was deemed at risk of ovarian hyperstimulation syndrome. That did not implant and they began looking at options in clinics abroad, opting eventually for a clinic in Eastern Europe, and beginning consultations in January 2019. Sinead began prepping last April for another cycle of IVF. They retrieved 21 eggs. The ICSI (intracytoplasmic sperm injection) method was used, where a single sperm is injected into each egg: 19 were fertilised, and they were left with 11 at day five.

At this point Sinead ran into trouble, with her doctors concerned she was in danger of developing a blood clot, and so were unable to perform the transfer. Her consultant in the clinic suggested they come back (at the end of May) and do a transfer on a natural cycle. Two embryos were transferred, with Sinead just on steroids and blood thinners, no hormones.

Two weeks later, back home, they got a positive test. "It was amazing," Sinead recalls now. "We were delighted. We more or less went over and told both sets of parents straight away. And then eight weeks later it was all over. I had a missed miscarriage. The baby had stopped at six weeks, and I didn't find out until eight weeks. There was no heartbeat at the scan. I found that very strange of my body, to be holding onto something that wasn't alive."

She was sent home, it was a Friday, and on the Monday the miscarriage did end naturally at home.

Stopping was never a consideration. They had two frozen embryos in Ireland, nine in the Eastern European clinic. "I knew I didn't have to do a fresh cycle of IVF and egg retrieval." Sinead then suffered from depression for a period and the couple's relationship broke down for a time.

She worked with the A&E crisis team, then later a clinical psychologist, services she says now were hugely beneficial. "I had parked a lot; I did a lot of work. I think it took the miscarriage and hitting that point, but in five weeks, I felt the best I had in years; I felt really, really good in myself." They got their relationship back on track, and in September, they conceived naturally.

Sinead was admitted to hospital in November with a threatened miscarriage, "but this baby so far is making it," she smiles. She is currently studying for a Certificate in Interpersonal Communications, led by clinical psychologist Tony Humphreys, recommended to her by a friend who had had eight miscarriages before getting pregnant. "I find it fantastic in terms of managing stress."

"I don't regret it for one second," she says of the couple's IVF attempts now, adding they will go again after this baby; she doesn't have a cut-off point in her head. "I've heard of women who are 47, 48 having babies. I'll go for as long as my body allows me really."

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