Experience

WHAT HAPPENS WHEN YOUR IVF IS CANCELLED DUE TO CORONAVIRUS?

Feeling anxious and out of control? Join the infertility club...

20.04.2020

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Nicole was just one week away from her embryo transfer when she got the call from her fertility clinic, on 17 March 2020, to say it would no longer be going ahead. She was home alone. "It was the worst phone call I've ever had,” recalls the 27-year-old from Birmingham who has been trying to conceive for two and half years. “I was utterly heartbroken.”

"It felt like the round had failed before it even started,” Nicole says. “It was in touching distance and I had the carpet snatched from underneath me. I then had to phone my husband, which was horrendous. I texted my family as I didn't want to talk. It was too raw. The hardest thing is not knowing the timeframe from here. There's no, 'you can start again in six weeks.' There's nothing..."

Nicole and her husband: "this was us on our holiday in Sri lanka in Jan 2020 between egg collection and starting the FET meds."

In the last month, women all over the country have been receiving similarly devastating phone calls, following the decision to stop all fertility treatment in order to reduce the burden on the NHS during the COVID-19 pandemic and comply with social distancing practices. In their latest statement, The Human Fertilisation and Embryology Authority (HFEA) said: "We will do all we can to lift this restriction as soon as possible but we cannot give a date when this will happen given the current situation."

To anyone experiencing infertility (that's one in seven of us according to the NHS; myself included) this is no consolation, and it is all too familiar. Because there are distinct parallels between being unable to conceive and the current, collective feeling of life being on pause. Feeling anxious, out of control, financially uncertain, or socially isolated? Welcome to the infertility club. We are well-versed in all of the above.

"Now, more than ever, there is an army of women out there who know exactly what you're going through"

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"Whilst everyone understands the reasons for halting treatment, clinic closures happened with very little notice. Meaning that many women were already halfway through treatments that had to be abandoned, representing unimaginable psychological and physical trauma and loss for many," explains Consultant Perinatal Psychologist Julianne Boutaleb who founded London-based counselling service Parenthood in Mind.

The trauma is real, whether you were about to start your first medications, or your frozen embryos were ready to go. Whether, like Nicole, you are embarking on your first round of NHS approved IVF (following the discovery of blocked fallopian tubes and a diagnosis of polycystic ovary syndrome (PCOS). Or, like 35-year-old Jenn, from the North East of England, you're pursuing treatment with the help of an egg donor, after an agonising eight year wait for a baby.

jenn wearing her #fuckinfertility t-shirt

Jenn and her egg donor had been taking medication for three weeks and her donor was due to begin her stimulation injections the day she got the call. "I never dreamed it would be completely stopped," she says. "After our donor and I had been through the side effects of the medications so far, it was a huge disappointment."

Jenn's cancelled IVF cycle is the latest setback in a heart-breaking journey that's so far resulted in multiple miscarriages and failed cycles of treatment. "My main fear, to this day, is that when fertility services begin to resume our egg donor doesn’t feel able to continue treatment," she says.

And if infertility grief wasn't already insurmountable, it often comes with an unwelcome side-helping of guilt, explains Becky Kearns, 34, a fertility and donor conception advocate, who now has three donor IVF-conceived daughters after going into early menopause.

"Those impacted are left feeling selfish and guilty for feeling as deeply as they do, with those who don’t understand the significance of a cancelled cycle brushing it under the carpet with “at least you...” comments which make them feel like their feelings aren’t valid," she says.

"the sense of being stuck in one place and time slipping away becomes even greater"

Emma Forsyth, who chronicled her TTC (Trying To Conceive; #TTC) journey alongside her friend Gabby's on their podcast, Big Fat Negative, agrees. "I had three cycles cancelled, and I can attest to the misery it causes," she explains.

"Infertility already feels like you are frozen in time: all your friends are speeding past you in the Race of Life and you're sort of standing there, waiting to hit this huge milestone. Then your cycle is cancelled, and you have no idea when it'll start again and the sense of being stuck in one place and time slipping away becomes even greater.” Add to that the guilt of having these feelings when others around you may be going into what are currently very dangerous workplaces every day, or even losing loved ones. “It's a recipe for very, very poor mental health."

So, what can those of us in this position do to protect ourselves when the world feels like it's crumbling around us and people keep making thoughtless jokes about a Corona baby boom?

"One way to deal with this is to see it as an opportunity to get your body as ready as it can possibly be for the treatment that will eventually take place: give up smoking, ditch the booze, and cut down on the caffeine," suggests Emma.

Controlling the one thing that can be controlled is an approach both Nicole and Jenn find useful. "I lost three and half stone last year to get into the BMI bracket for IVF and found a passion for fitness, so I've kept up with that and tried to refocus myself," explains Nicole. "We can't control the situation, but we can control what's going on in our minds and bodies. Pick something you can focus on whether it be a new hobby like painting or just doing a jigsaw puzzle."

"The next few months are about doing what we need to, to survive and stay physically and emotionally healthy," adds Jenn. "Regular exercise and being amongst nature by going for walks really helps my mental health. I also try to actively manage negative self-talk - I try not to think things about myself that I wouldn’t think about my best friend. A real game changer for me was discovering gratitude; every day I acknowledge three things in my life I’m grateful for, from my husband to something as simple as a nice cup of tea in peace!"

Both Nicole and Jenn are active members of the #TTC community on Instagram alongside Becky who recently wrote an open letter to (private) clinics after 88% of her following said they felt abandoned. The letter has been viewed over 7,000 times with major clinics already starting to take notice. And while the future might still look unclear, one thing's for certain - nobody needs to go through this alone.

"Finding the TTC community on Instagram changed my experience of infertility," says Emma. "I went from feeling completely alone in the world to having a massive girl gang who understood exactly what I was going through. Now, more than ever, there is an army of women out there who know exactly what you're going through. Embrace it - even if you start an anonymous account, nothing is more valuable than finding a place you feel you belong."

Okay so, now what?

Consultant Perinatal Psychologist Julianne Boutaleb offers her advice on the practical ways to cope

Feel your feelings

"Whether you want to cry or get angry, do it. A good cry helps us move into the parasympathetic (part of the autonomic nervous system that controls functions of the body at rest) part of our brains and releases soothing neurochemicals such as oxytocin."

Speak to someone

"Talk to a trusted friend or a therapist specialising in fertility issues. Feeling understood and connected to someone who cares for you also has neurochemical benefits as our brain releases oxytocin, the bonding hormone which soothes and balances out stress hormones such as noradrenalin and cortisol."

Find a purpose

"Reinvest in spiritual practice or meditation – something which allows you to reconnect to something higher than yourself. For some, this might be meditation or prayer or getting involved in a local community effort to deliver meals to the vulnerable. Altruism and being connected with others can give respite from feelings of hopelessness and helplessness."

Look for distraction

"Getting engaged in an activity, such as knitting, crosswords, gardening or a decorating project helps us move away from more overwhelming emotions such as fear and/or anger."

Reframe your thoughts

"Cognitive reframing and affirmations can be helpful. Such as saying to yourself: “I have to let go for now, but I will continue to do what I can to stay healthy.’”

Remember to breathe

"Grounding and breathing exercises such as the: 'Name five things you can see, four things you can hear' grounding exercise and the use of the 4-7-8 breath (known as ‘relaxing breath’) help with coping when dealing with surges of emotion."

Organise your time

"Chunk the day and week into a range of activities, i.e. spending an hour talking with friends online then turning to a home improvement project or yoga class helps move you in and out of different parts of the brain and helps you feel more in control."

Plot positivity

"Make a pin board and fill with inspirational quotes, aspirational pictures and photos reminding you of how strong and loved you are. Perhaps ask family and friends to contribute."

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