No more suffering in silence

EVEN if you’ve never experienced fertility problems yourself, the chances are you know someone who has.

The fact that one in seven couples struggle to conceive and a quarter of all pregnancies end in miscarriage means that there must be many tales of trauma, heartbreak and disappointment within our community.

So why do we hardly ever talk about it?

That was the question posed by Eleanor Perkins, who moved to Guernsey seven years ago. She had her son here by emergency C-section and, now in her mid-30s, she had hoped he’d have a sibling by now, but she has secondary infertility.

Her own experience, as well as hearing about some upsetting events in her friends’ lives, encouraged her to reach out to other women on social media last Mother’s Day, asking them to share their stories of infertility, miscarriage, IVF and adoption.

‘I wanted to move away from hushed conversations by empowering women to normalise conversations about these topics,’ she said.

‘I don’t think we’re fully aware of how common this is and how many women we work with or are related to are suffering in silence. I wanted women to feel confident that they could talk about their experiences, while at the same time being able to share my own.’

She was surprised by the responses she received.

‘Some people I knew would get involved, but so many others that I had no idea had struggled with fertility or miscarriage or just achingly terrible periods got in touch too.

‘I experienced so many emotions reading the contributions – guilt that I hadn’t recognised someone in my department had suffered with endometriosis to the point that her marriage ended, sympathy, love and later sheer joy for one of my oldest friends going through two miscarriages and against those odds giving birth to a gorgeous boy just a few months ago, heartache for someone who reached out to me on Twitter after a miscarriage and then completely disappeared.’

Once lockdown restrictions had ended, the Guernsey Pineapples fertility support group relaunched their monthly meetings so Eleanor reached out to them too.

She decided to collate all the stories she received into a book, which she has now published, called Let’s Talk About It – Letters to Other Women.

‘I wanted to call the book Let’s Talk About It because these topics aren’t talked about enough, certainly not before you’re in the thick of it. Women often avoid talking openly about things as natural as periods and as devastating as miscarriage, and those around them don’t always know what to say. This book provides the start of that dialogue.

‘The entries from women all over the UK and Guernsey are little letters of support, reassurance and knowledge that I hope will help women feel more empowered and more informed after reading them.

‘One entry actually discusses the issue of not being able to talk about her miscarriage, as it is too painful to relive the experience, and that is a valid point of view, so I included that too.’

One of the local contributors, Sophie Appelqvist, decided to share her experience of preeclampsia, a pregnancy complication characterised by high blood pressure and signs of liver or kidney damage.

‘I found my pregnancy a real shock because of how many things I didn’t know and felt frustrated by the secrets and negative elements of pregnancy that still exist,’ said Sophie.

‘Since contributing to the book, I have miscarried and struggled to conceive before falling pregnant with this baby and I genuinely feel the open conversations and attitudes created by contributing have helped me be more open and positive. I hope the book helps other women in similar ways.’

Fellow contributor Helen Young also hoped to help other women with her story of solo parenting using donor sperm.

‘My situation has been unusual, with added hurdles along the way. I find that talking and writing about it helps me, but [I hope] that it will also help others, especially if they don’t know of anyone who has experienced something similar.’

Eleanor said several women who initially volunteered to take part found that, when it came to writing their letters, their experiences were still too fresh or raw so they decided not to contribute.

‘I’m really happy to say that some of those ladies have since bought the book and they’ve found it genuinely helpful. The feedback I’ve had from readers has been overwhelming and many of the contributors have found the process of writing and talking cathartic and that’s wonderful.’

Men were welcome to respond too but none did. ‘I think sharing like this is perhaps even more challenging for men,’ said Eleanor.

‘I’d like to do another edition of Let’s Talk About It and would really love to have some male perspectives.’

She said the book is primarily aimed at women who are about to embark on starting a family, or who have experienced the issues included. ‘Although it’s here for everyone: men, women, young, old. Words like fertility, miscarriage, adoption and endometriosis should be part of standard vocabulary.’

Never having done it before, she found the publication process a huge learning curve.

‘I have only recently approached agents – I’m yet to hear back but fingers crossed – so I’ve self-published and learned a lot along the way. It’s been a small but totally worthwhile investment. There are only 160 books in print and any profit made from them will be given to the Fertility Network UK charity.’

Her hope is that this book will be just the first in a series of ‘Letters To Other Women’ that will include subjects such as single child or childless families, motherhood and mental health, periods, marriage and divorce, and grief.

‘I’m hoping that women, and the men in their lives, who have read the book will feel more empowered to talk about and perhaps write about their own experience in the second edition. I’d like the book to be more diverse and include a wider range of backgrounds and experiences.’

To follow the progress of the series, and to volunteer contributions, you can follow @LettersToOtherWomen on Instagram.

This summer, Eleanor will also be organising a fundraiser and setting up a support group for women and their families.

‘I would like to say a very public and extremely loud thank you to all the women who have volunteered to share their experiences of heartbreak, shattered dreams, joy, happiness and hope. Thanks also go to those who have picked up a copy, shared their opinions of the book and started their own conversations about becoming and staying pregnant.

‘Cheesy though it may sound, I am so glad we’re starting to Talk About It.’

• Let’s Talk About It – Letters to Other Women, priced at £7.99, is available from Lexicon and Lucy Rose Jewellery and can be ordered by emailing letterstootherwomen@gmail.com. Any proceeds will go to the Fertility Network UK charity.

Book Extracts:

Leonie – secondary infertility

I am consumed by the world of infertility/IVF and now, pregnancy loss. My life consists of scheduling and attending appointments, ultrasound scans, blood tests, injections, sorting prescriptions, side-effects from all the hormones. I can mostly cope with the physical discomfort from IVF but I struggle with all the emotional aspects. One of the most challenging parts is after egg collection, finding out if any eggs have fertilised, and then having to wait for phone calls to see if any of them make it to day five for embryo transfer. It is torture. And then comes the even longer ‘two week wait’ before test day arrives, wondering if the symptoms are from the hormones, PMT or pregnancy. There is a lot about infertility that can’t be controlled but I try and control what I am able to, such as my lifestyle choices, food and drink, exercise, self-care and mind-set.

Sophie – preeclampsia

I know now why it’s important to associate these symptoms with preeclampsia and not just late pregnancy, because if monitored, preeclampsia can be a managed part of your pregnancy, however, if left it can be fatal to both mother and baby. And this is where the keen eye of a fabulous midwife saved both me and my baby.

I met a wonderfully powerful and forthright midwife during a routine check-up on the ward. She wasn’t my usual midwife, just a member of staff on shift who came to check on me. By this point my headaches were getting worse, and the swelling meant I could barely walk. Instead of classing this as normal pregnancy, like I and many others had already done, this midwife marched across to the ward desk, and made a very determined (and may I add scary and loud!) phone call to the specialist. I heard her clearly demand that a doctor be sent to the ward immediately, and I don’t blame them for following her assertive commands.

Lorna – miscarriage

I told a friend a couple of days ago that I am grateful for my miscarriage. This might seem a strange thing to say, but bear with me. I mentioned earlier about society’s decreasing ability to sit comfortably with the uncomfortable. I firmly believe that this has to change. One way of doing this is through mindfulness, which I found almost accidentally through practising yoga. My miscarriage gave me the opportunity to put everything I’d learnt into practice, and it has strengthened my ability to stay present, something for which I am increasingly grateful as I experience pregnancy for a second time.

Dee – a second miscarriage

We managed to get a scan for the following day and it was inconclusive – we were measuring a week behind and they couldn’t detect a heartbeat however they said that was fairly normal and to come back in 10 days. I dipped between hope and despair during those 10 days and again, I don’t know how I got through them. I sobbed most days at the possibility of losing our baby again.

10 days later and our fears were confirmed – the baby hadn’t grown at all and there was still no heartbeat. I was booked in for surgery a week later – another period of waiting – either to bleed naturally or to go in for that same operation.

Helen – solo parenting using donor sperm

All went fine and one embryo was transferred – but unfortunately an early scan revealed issues and on 22nd December I had to have a laparoscopy as this was an ectopic pregnancy. I hadn’t really thought this might happen as they place the embryo in the uterus, but I know now that they can drift, which is what happened. So, under general anaesthetic (which terrified me), one fallopian tube was removed and I was sent home to recover.

Emotionally, I was feeling pretty rotten, but I am quite pragmatic and recognise how lucky I was that the scan showed this and that I didn’t end up with a ruptured tube and a far worse fate. I was fortunate that there were three embryos frozen on this round of IVF so I remain hopeful and cross my fingers that when the Covid-19 situation has passed, I can try to use one of these and have a sibling for Olive. Time will tell.