IVF Lessons from Lockdown

A recording of the ‘Lessons from Lockdown’ event will be posted shortly on the Progress Education Trust’s YouTube channel. I’ll share the link when it’s available. In the meantime, you can read my presentation on the panel below.

Introduction

My name is Seetal Savla and I’m one of many fertility patients whose treatment was postponed when clinics closed in April due to the dangers of Covid-19. Before I explain what happened and how it made me feel, I would like to thank the Progress Educational Trust for inviting me to share my experience as part of this incredible panel (which included Professor Jacky Boivin (Cardiff University School of Psychology, leader of recent research into patient experiences of fertility clinic closures during the COVID19 pandemic), Dr Zeynep Gurtin (UCL EGA Institute for Women’s Health) and Carmel Dennehy (fertility counsellor). I hope that the valuable lessons that we have learned from the first lockdown will be applied to minimise the impact on fertility treatments during this one, as well as the damaging consequences of delays on patients’ mental health.

My Fertility Story

So, what’s my fertility story? It’s hard to condense four difficult years into a few minutes, but I’ll give it my best shot (pun very much intended!). On Christmas Day 2015, my husband and I found out that I was pregnant. It was our first spontaneous pregnancy and we were delighted about this unexpected festive gift. Sadly, I miscarried a fortnight later and was utterly devastated. It suddenly dawned on us that it was our sole pregnancy in eight years of marriage, so there was clearly an issue we needed to investigate urgently. After a year of tests and waiting, I was diagnosed with diminished ovarian reserve as we embarked on our first round of IVF. We have since suffered four failed cycles across three clinics, two of which are private, and are now pursuing donor egg IVF in the hope of success.

When COVID-19 Struck

It was our fourth and final cycle that was affected by Covid-19. We switched clinics in January and were eager to get going as it had been six months since our previous cycle had ended. After more tests and waiting, I started stimulations on 22^nd February. By this time, the UK media was constantly covering Covid-19 and so we suspected that our cycle wouldn’t go smoothly. As lockdown looked increasingly unavoidable, we discussed contingency plans with our consultant, who sensitively set and managed our expectations so that we always knew where we stood in spite of the limited information available. My egg retrieval went ahead on 19^th March, our embryos were frozen (which was always part of the plan as we were doing pre-genetic testing for the first time) and our treatment was paused three days later.              

Expectation vs Reality

Just because you expect something to happen doesn’t make it any easier to accept. Even though I had known for weeks that our cycle was going to be postponed, a small part of me kept clinging onto the hope that we would still be allowed to continue somehow. After months of waiting around, we could finally see the finish line, but when our clinic closed, it suddenly disappeared and we were left stranded. We had zero control.

Compassionate Care

There are so many obstacles to overcome at every stage of an IVF cycle as it is and then we were hit with the biggest one of them all so far. I felt destabilised, frustrated, angry, helpless and hopeless. Experiencing these emotions on repeat was exhausting. None of the negativity was directed at my clinic, however. I can’t praise the team highly enough for their regular updates via email, over the phone and on social media, as well as hosting and contributing to several webinars, all of which was very reassuring and made me feel like I was in the best possible hands. It was such a confusing, stressful time, but their calm, caring and consistent approach gave me the stability I needed when pandemic panic was out of control. I know that I’m one of the lucky ones because lack of communication from my clinic was something I didn’t have to worry about for which I’m extremely grateful.

Corona Baby Boom Jokes

But the one thing they couldn’t do was tell me how long I would have to wait before we could resume treatment and that’s all I wanted to know. I was 38 at that point – not quite over the hill, but not exactly in the first flush of youth – so I was acutely aware that time wasn’t on our side. As each day went by without any news about when clinics could reopen, I could almost physically feel this precious time slipping through my fingers and our chances of becoming biological parents dwindling. Hearing people repeatedly joke about expecting a “Corona baby boom” later in the year or complain about the lack of childcare or homeschooling on work and family Zoom calls didn’t help at all. I was screaming at them on the inside about the unfairness of it all while smiling and pretending to care on the outside. It amazes and enrages me to think that so many can conceive naturally for free, whether they want to or not, and yet my womb remains empty despite the thousands of pounds we have spent.

More Obstacles

I didn’t have time to dwell on our bad luck because we had some other major life changes happening which pulled our focus away from IVF. We had sold our flat shortly after lockdown started and we, along with the new owners, were keen to transition as quickly as possible before any further complications arose. We therefore had a week to move out of our home of ten years and get creative since storage facilities, rubbish tips and charity shops were all closed. Thankfully we weren’t moving very far, so we spent our evenings packing, loading and unloading the car and unpacking. By the end of that week, we were absolutely shattered and emotionally depleted. Another challenge was that we were moving in with my in-laws, which I’m still adjusting to seven months later. These distractions, albeit very stressful, prevented my mind from going into overdrive about our postponed cycle. Without them, I would have driven myself crazy fixating on my fertility woes and being angry at the world. As it was, I just felt numb.

Emotional Media Interviews

However, the emotions I had pushed to one side to concentrate on the move resurfaced when I started speaking to the media about my IVF lockdown experience. Over the course of a few weeks, I was interviewed by the BBC for Woman’s Hour, London News, Asian Network and their 100 Women series, Channel 5 News, The Guardian, iNews and Huffington Post’s ‘Am I Making You Uncomfortable?’ podcast, as well as co-writing a piece with my husband about his side of our infertility story for the Metro. Retelling the story made me relive it and reconnect with my fear, crushing disappointment, grief, anxiety and anger. It made me feel like an even bigger failure than usual because none of this would be happening to us if my body could do what nature intended. I felt overwhelmed and took some time out to process everything by working out, eating well, meditating, taking long walks and a week-long break in Rye.

Relief When Clinics Reopened

In the end, our cycle was only delayed by a month. When the HFEA authorised clinics to apply to reopen on 11^th May, I was obsessively refreshing their website every day to check if mine appeared on their list. It was such a relief to finally see their name three days later, although I felt a pang of guilt for those who would have to wait much longer, some of whom may still be waiting. Watching others share their delight while they were left in the dark must have been extremely painful.

No Happy Ending

I wish I was about to tell you that my story had a happy ending, but our frozen embryo transfer resulted in a big fat negative as they say in the TTC community on Instagram. Hearing our consultant say the two words that no fertility patient wants to hear following the two-week wait was heart-breaking. After all the uncertainty and extra challenges, some good news would have been very welcome. Our consultant kindly scheduled a post-cycle debrief over the phone the next evening, which meant that we could start coming to terms with yet another failure instead of having to wait a few weeks and keep wondering about what went wrong.

Back In Limbo Land

My husband and I now are pursuing donor egg IVF using a Portuguese donor, which will be facilitated by our clinic. We were hoping to start our first cycle this year, but things are taking longer than expected for various reasons. Thankfully the treatment will be carried out in London, so travel bans won’t affect our plans. But being back in limbo land is dampening our excitement and hanging onto the last shreds of hope is a daily battle, especially now with another lockdown starting today and the incessant doom and gloom in the news and on social media.

Being a Fertility Advocate

While we wait, I’m continuing to document our journey on my blog and Instagram. Having conversations with people who are in a similar situation and offering them support through my posts is rewarding and gives me much-needed strength, as does raising awareness of the impact of infertility to educate others and destigmatise it among South Asian communities. I’m so proud to be in a position where I can represent those who can’t or don’t wish to speak openly about their experiences so that they can identify with someone who looks like them and who is also struggling with infertility, making them feel less alone. While there are so many things I dislike about my reality, I’m immensely grateful that so much good has stemmed from it.

LINKS TO MY IVF BLOG POSTS

Me, Myself and IVF
Third Time Unlucky
How to Fail and Lessons Learned
What Not to Say to Someone Struggling With Infertility