When Loss doesn’t have a name | IVF

When Loss doesn’t have a name | IVF

This week was baby loss week. Posts everywhere of heart breaking stories. Unimaginable pain. Strength no one would think they have until it happens to them. Women who have shown amazing bravery both privately and publicly.

In the midst of all that are women who’ve lost their embryos in IVF. Not a miscarriage, yet not just a failed medical procedure. Somewhere muddy in between that isn’t spoken about. That isn’t understood. Where women (and men) feel alone with this grief that doesn’t have a name or fit a category because it’s silent.

I spoke on instagram stories (@itsjulesfurness) on Friday about having a wobby day. Then it all tumbled out. I’ve often shared our IVF video diary. I haven’t shared how the failure feels. How I was struggling with feeling loss, but feeling it alone.

Did you know, that when a woman (let’s say woman A) has IVF, the day she has her embryos put into her tummy, she is at the same stage as  woman B, with a nearly 3 week non-IVF pregnancy? Both women have their embryos in their tummy and are hoping they manage to nestle in to attach. That the day woman A takes her pregnancy test to see if her embryo managed to stick, she would be the equivalent of nearly 5 weeks pregnant? If woman B’s embryo doesn’t attach and she is aware, it’s called a miscarriage. If woman A’s little embryo doesn’t attach, it’s called a period. “Just save up and try again….”

And we’ve done that. We are starting our next cycle of IVF now. But that doesn’t take away the fallout from last time. 

I’m not saying it is miscarriage. I’m saying it’s this painful, overwhelmingly sad thing that happens, that has no name and isn’t given much time. That for many many women it’s a loss, the beginnings of their baby. It was alive. They saw it dividing on screens. They saw it on the scan being placed in their uterus. They nurtured it. They hoped for it. Imagined what could be. It passed away inside their bodies. They went through the bleeding afterwards (FYI consultants, a “normal period” doesn’t ruin 3 pairs of pyjamas in one night).

And according to the hundreds of messages I got after speaking about it at the weekend, and the posts I see in forums, it’s causing a huge group of women to feel alone, to grieve and to not have support out there specifically for them. Who felt they couldn’t join in with baby loss week because their embryos where put in their tummy by catheters. Is it because they knew it may not work? Does that mean they don’t have a right to grieve too?

I tried to speak up for us as a group of women a few months ago and the message I felt back, all be it from a minority of people, was “you don’t belong here”. Go sit in national infertility week like a good girl. Your loss doesn’t count. It doesn’t have a name. Or worse, comparisons. Comparisons over loss in my opinion should never take place. Every loss is different. It is all painful. It all deserves us supporting one another through it.

Over 67,000 cycles of IVF take place each year. Around 65% of those fail every year. Thats thousands of women who might be feeling alone in this. So I’m sharing just a handful of the messages I received this weekend. I’m lucky to be in the position I am. To have these genuinely caring women around me through our rollercoaster. They made me feel less alone. Many people don’t have that. Whether these messages are from people who haven’t been there but genuinely care, or are from women who have been there and wanted to share how they feel too. If you have felt loss after IVF, they want you to know you aren’t alone. Just click each message to be taken to the next. Please never feel ashamed to feel your loss in your own way.

*Please note these brave women gave permission for me to share these messages on this blog. They must not be reproduced on any other site without my and the womens express permission*
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12 Comments

  1. October 16, 2017 / 4:18 pm

    Thank you so much for posting this. My first round of IVF in May resulted in a failed cycle and my second one in August resulted in a pregnancy followed by a miscarriage at 7 weeks. Despite the second time being more ‘real’ in a sense, both felt like a massive loss to me but I felt I didn’t really belong anywhere the first time round. I had technically never been pregnant so there was nothing to lose. Even with my miscarriage at 7 weeks my clinic kept reminding me that it wasn’t a baby, at 7 weeks it’s still an embryo. This just made me want to scream. That was still our baby that myself and my husband made, albeit with the help of IVF, but he was still there, for 7 weeks he was a tangible being that I could feel pinching and stretching around inside me. The more I go through this process the more I realise how intolerant and unkind some people can be. I naively thought people would understand; this is a big deal for us; it’s a constant rollercoaster of emotions and some days I just want to stab myself in the eye! I guess it’s true to say that until you’ve walked in someone else’s shoes, you really have no idea how they feel. Thank you for recognising and opening up a discussion on such a grey area of loss. Love Rachel xx

    • October 16, 2017 / 5:53 pm

      Oh Rachel, I’m so sorry for everything you’ve been through. Gosh you should have been treated so much kinder but you hit the nail on the head that until someone has walked in your shoes, sometimes they just can’t get it…or don’t stop and think about it long enough to put themself in our place. I hope writing down how I felt at least helped you feel a little less alone in it. Massive hugs x PS no stabbing in the eye!

      • October 17, 2017 / 1:02 am

        Thank you so much Jules, and massive good luck to you on your impending round! Sending you lots and lots of baby dust xx

  2. Anne
    October 16, 2017 / 7:48 pm

    We kept very quiet about all of our rounds of ivf (3 in total, the final one successful) but, the few people who knew what we were doing (my manager, a couple of close colleagues, my brother) and the timescales, were all waiting for news.
    The hardest thing was the really downplayed language the loss required us to use. The most I could say was “It didn’t work”, like it was just a process. The words I wanted to use were the words that indicated my feeling of loss; “It was there but it went away”; “I lost my blastocyst”. It was a thing that was totally real to us. I was aware of the embryos in me, all my waking hours but the loss of them was something that could not be described or acknowledged by anyone other than my partner and myself.

    • October 21, 2017 / 12:42 pm

      I’m so sorry Anne. It can be a lonely journey. Hope it helped to read of someone else feeling that way too x

  3. October 16, 2017 / 8:34 pm

    We were lucky enough to have a successful round of ICSI first time round. I had three frozen embryos, I felt love for all of them, I thought my baby had 3 frozen triplets waiting for us to be reunited. The first egg didn’t thaw and perished, the 2nd egg ended in a negative test, and the last egg perished during thawing too … I feel guilty for wanting my son to be a brother, I also feel guilty that I cant make him a brother! It’s a horrible turmoil I don’t wish on
    Anyone! We’ve done accupuncture. We’ve change diets. There’s is no reason we can’t have kids which is the frustrating and painful reason: there is no reason! But i feel like I’ve been a mum to 4 just only 1 is here with us xxx

  4. October 16, 2017 / 10:33 pm

    We’ve been blessed with being crazy fertile and have gotten pregnant first try for each of our kids, when both of my siblings with children have had to go through IVF. I know how amazingly lucky we’ve been in that respect. Two years ago, our world had fallen apart. Our firstborn passed from SIDS. Our world came crashing down and will never ever be okay without her in it. Whilst our experiences and challenges are so very different; I read your post and I see fundamental similarities. It’s love and loss and hope. That little blastocyst is your every hope for the future. It’s no small thing and never just a period if your little bean doesn’t stick. It’s everything your dare to dream changing before your very eyes again, no control. Keep communicating lovely and break down those walls. Thank you for expanding how I think about the wave of light!

    Absolutely all the best!

    • October 21, 2017 / 12:43 pm

      Oh Nic I’m so sorry for your terrible loss. You are so so strong. Thank you for your kind words x

  5. Elaine
    October 16, 2017 / 11:22 pm

    My husband and I just finished our 1st FET after a failed ivf. (We don’t know the results yet) Our clinic gives you a photo of your embryo(s) to take home. We framed ours and put it with my father’s ashes after ivf failed. The pain is VERY real and as far as we’re concerned our little embryo was just too perfect for this world so he/she went to be with papa. It’s sometimes sad to see the photo but it really was the best way to acknowledge that he/she was real and loved beyond measure.

    Wishing you all the baby dust this world has to offer ❤️

    • October 21, 2017 / 12:45 pm

      What a beautiful way to remember. We planted a rose bush after our first failed cycle. It helps to have something physically there sometimes doesnt it. Sorry for your loss and thank you for your kind words x

  6. Claire
    October 18, 2017 / 12:21 pm

    You’ve said everything I’m feeling. We’ve just ‘failed’ our 9th transfer. Only one of those has resulted in a positive – only to miscarry at 7 weeks. It is the most consuming, overwhelming process that no one understands unless you’re in it. Telling my husband it didn’t take, again, breaks my heart all over again. We have no reason for our infertility, were tried everything. Acupuncture, diet, all sorts of injectables, a Balinese healer, spiritual cleaning & every superstition in between, ovulation induction, clomid & three rounds of ICSI with generic screening resulting in 9 transfers. There are no answers which makes it even harder. I want to be angry at someone or something but it’s no ones fault I know that.
    Losing an embryo – being told it’s a negative outcome – is a strange limbo land of grief. You’ve thought about this ‘maybe’ every waking second for the past two weeks only to know it will disappear in the next few days. Hope, dreams & fear all crash into each other into a mess. Day off? Feel guilty as it’s ‘just’ a period. Cry? Yell? Run away? Just be sad, pick yourself up & push on with this thing called life?
    Thank you for sharing your words, I needed them today x

    • October 21, 2017 / 12:47 pm

      Oh Claire, I’m so sorry for what you have been through. Such a long road, but my goodness you’ve been so strong. I have an “answer” I guess for why we need IVF, but unfortunately it doesnt stop the anger sometimes. I think even with a reason, there is still no reason why us if that makes sense? I really hope you are doing okay and I’m so sorry all this is happening x

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