38 Comments
Nov 27, 2023Liked by Jennie Agg

I think general fertility/menstrual health should be taken seriously from childhood. I had such bad period pain since I was a child, enough to keepe off school often. It was never looked into, I was just given the pill to cover up the symptoms.

As an adult in my thirties it turned out I had a short luteal phase and crappy quality eggs and suffered multiple miscarriages and I often wonder whether my symptoms as a child were my body telling me something wasn't right.

But the medical profession seems too keen to cover the symptoms and not look at the cause.

Tash x

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Nov 27, 2023Liked by Jennie Agg

I think what I'd like to hear more about is the treatment (as in 'bedside manner' and user experience) of those going through recurrent miscarriage. I think not many of us have a 'home'. It's not 'traditional' infertility and it's not really looked at until you are pregnant, or at least, not in my case because I'm only seen at the early pregnancy unit.

I also think how you are treated and how you navigate the health system (with not every part speaking to each other) is something that doesn't get a lot of air time. Being treated badly and/or dismissively by those you are seeking help from compounds the most difficult of times and is, often, rooted in the inherent neglect of women in the health system. I think also, unless you engage with it (and most service providers don't!) people don't know just how disjointed, and therefore time consuming/emotionally draining it can be. I gathering this information together would present a really strong picture. I don't think these are outlier experiences. And I think, as commenters below have mentioned, getting good quality information, like when to stop, is part of this fragmented approach to care. I think it would be good to give those engaging with these services a collective voice.

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Nov 27, 2023Liked by Jennie Agg

A bit similar to the comment you mention, I struggled to find much around the decision making process of how long do you keep trying and when do you stop. I felt like a lot of accounts where either people continuing to try or having had "success" in the end when I was very much in the middle of "do I want to keep going and what does it look like if I don't?". Also, I feel like often terminations for medical reasons are kept outside of the general fertility debate. There's great resources and support on them, but that seems quite separate. I had both a termination for medical reasons and miscarriages and sometimes struggled to find spaces or resources where both resonated.

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Hi Jennie. I began following your account after my miscarriage two years ago. At that time I started following many similar accounts in the hopes of finding some support, which I did. However, what I have noticed in the ‘world of fertility’ since then, is that most people talk about either miscarriage or IVF. And what’s left in between is hard to find information on. I have been trying to get pregnant for 4 years now, and have had multiple rounds of ovulation induction. I had one pregnancy, 2 years ago, that ended in miscarriage. I find it difficult to find accounts and people who are going through non IVF related treatments for infertility and people who are trying for years to become pregnant but can’t. People who know what it’s like to try every month and fail for years on end. Personally I feel this side of fertility is talked about far less than miscarriage and IVF is. I loved your book and enjoy your newsletters - thank you for what you do in this space!

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Nov 27, 2023Liked by Jennie Agg

I feel like, reading the posts below, there is just such a gap in providing the right information to women about their bodies and their choices. It feels like, in so many aspects of fertility/pregnancy/birth care, we are infantalised or told to do what the medical practitioner says is best, without being considered or left with no advice because they don't know what to say.

Even physical miscarriage care suffers from this -I attended A&E with a significant post-op infection, even though I was not displaying the symptoms I was told to look out for (leaflet listed 'flu-like symptoms' rather than a temp of 38+C). What would've happened if I didn't have a mum who'd trained as a nurse, who brought me up to know serious fever after surgery normally = serious infection?! I was also then given IV antibiotics whilst sat by a bin in A&E, because I'd been left there, not because there were no free bays... What does this say about how women are viewed?!

I wish we were treated like adults. And adults who were/are going through meaningful and/or difficult experiences. I wish we were cared for as humans.

The postcode lottery Lauren mentions too, around mental health, is awful. It's also often dictated by what said practitioners deem as 'bad enough' to require it. Or, at least in my experiences! 3 losses was normal but at 9 they took it seriously. But, as a result, I had losses 4-8 without even bothering to report them or seek medical advice (they were super-early, I would've sought help if I was seriously unwell).

I feel like the bad experiences people have whilst trying to have a baby must inform how they engage with medical services related to fertility/pregnancy after. It must also impact maternal and foetal health.

Also, I do think, if care was better (and by that I mean humanising and joined up, not necessarily more plentiful) I wouldn't feel as done with trying as I have done recently.

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Nov 27, 2023Liked by Jennie Agg

I'd be interested in the post code lottery of mental health support after pregnancy loss. I had an ectopic pregnancy a few years ago and received life saving care from NHS, but absolutely nothing about mental health or even a leaflet pointing me to example the EPT or miscarriage association. It was very isolating and confusing. Also doctors telling you it will probably work next time when you try again... (guess what I had a miscarriage next time, "it will probably work next time.." and then I had a second ectopic which took my second fallopian tube). After the second a Dr apologised to me for how sexist medicine was and why we didn't have an understanding of how ectopics happen

Also linked to that, on my first loss I felt like I'd lost a baby (my first pregnancy had been straight forward and I was completely naive about everything that followed). But for my subsequent losses I never felt that way again as a way of protecting myself. I guess the coping strategies we take on ourselves in order to protect ourselves. Similarly I've just been through an unsuccessful round of ivf and just never allowed myself to think it would work because it hurts too much when it doesn't.

Finally I'm also interested in what support there is for people who have decided to stop trying. I wonder in places where mental health care is better there are any specific services around this. It feels like you just have to muddle through this decision.

Sorry that's a lot of things I'm interested in! Also just a thanks to you Jennie, your book and all the things you do really help. Sometimes it's just nice to be able to read things and say hey I feel those same things too!

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Nov 27, 2023Liked by Jennie Agg

For me, the topic that never gets addressed, even (especially?) within the infertility community, is what happens when that "rainbow baby" never materializes? People cannot fathom saying "enough" when you don't have even ONE living child to show for it -- but it does happen, more often than most people realize. It's not something anyone wants to think about, but it's the reality for many of us, and it needs to be normalized and de-stigmatized as a valid option. It's possible to have a good life without the children you once thought you would have (and tried so hard to bring here). It's not easy, but it is possible. For more information & support, I would recommend Jody Day & Gateway Women, Katy Seppi & Childless Collective, and Stephanie Joy Phillips and World Childless Week, for starters.

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Nov 27, 2023Liked by Jennie Agg

Hi Jennie, something I would love to see numbers of (I apologise if you have written about this already - I'm still in the early chapters of your book) is the the rates at which women leave the labour market / changed jobs, as a result of their journey with infertility and miscarriage (and recurrent miscarriage - surely the numbers increase with every miscarriage). I would love to bring more awareness of these topics in my profession (which is very international, so numbers from any country are relevant here), but I feel like my colleagues won't care unless I've got some solid numbers of how this topic could affect the diversity efforts of the profession (STEM profession, so very male dominated - how to retain women to the profession is a big topic). Thanks if you have any links or recommendations! xx

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Nov 28, 2023Liked by Jennie Agg

How infertility takes away your chance of planning age gapes. And not just that you cant plan in general but more that one feels rushed to try for another one because it took a while. I never wanted another baby before my first one was at least 3-4 years (why make it harder for myself haha) but now I feel like I have to start trying way earlier. But then.. what if it suddenly does work quickly? I cant complain about that, I guess. But its really not what I want/wanted

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Nov 27, 2023Liked by Jennie Agg

There's been two things on my mind recently, where I actually thought "I would love to read something from Jennie on this".

The first I think you explored in your book but I haven't seen addressed much beyond that: What are the wider mental and physical health implications of recurrent miscarriage or infertility - as they relate to future pregnancies and birth but also beyond that. Does it make other health conditions more likely and if so, could they be addressed? I read an article recently that pregnancy is like a stress test for your body and any issues could also flag other areas of vulnerability but it did not contain much more concrete information and it is so rarely something other health practitioners seem to take into consideration where it could be relevant.

The second is related to parenting after loss or after a long wait for living children, where there seems to be quite a bit out there but often not going far into the future and hardly ever from the experience of the children. I resonated a lot with what you raise in your book of not wanting to overburden your "miracle / rainbow / waited for" child. It seems a real challenge to me to stay true and authentic to one's own pregancy and motherhood story, incorporating losses or the difficult route to get there into one's life where and how that feels right (which might include thinking of living children as rainbow children and wanting to celebrate that whilst honoring lost babies or pregnancies) and at the same time not to overburden any living (biological or adopted or fostered) children or determining how they ought to relate to their parents' and family's story.

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Nov 27, 2023Liked by Jennie Agg

I would also love you to explore induction of labour - when it is being recommended, what info / choices women are given, whether it’s too early in the pregnancy, whether induction is commenced in the morning shift, whether women are given sufficient info about pain relief, whether it’s fair that women being induced don’t have access to birth pools (as it’s deemed a “medical labour”), whether women should be offered the option of transferring to midwife-led care once an induced labour has got started, whether NICE guidelines are being followed.

I have 2 of my 3 babies via consultant recommended IOL and years later I still feel traumatised by how fast, how painful they were and how alone I felt. Neither time did I get to have 1-1 midwife care in a Labour ward room - both babies born on busy antenatal ward rooms, whilst midwife’s downplayed my progression. Both times the induction was delayed day after day (despite being told it was urgent for the baby’s survival) and then both were commenced c 9/10pm at night because the day shift was too busy. Meaning both babies born in the middle of the night shift with few staff around. NICE guidelines state that women being recommended for IOL should be told that it is proven to be more painful - and therefore have upfront conversations about pain relief. And guidelines say IOL should be started in the morning on a week day. My experience suggests these standards are rarely met. I am also left wondering if I really need my babies to be induced at 37 weeks - which led to a downward spiral re jaundice, weight loss and - ultimately - the failure of breastfeeding. ;-(

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Dec 9, 2023Liked by Jennie Agg

I might be a bit late to the game here but there are two things I would love to hear more about. The first is secondary infertility. What are the physical reasons why it can happen? How can someone conceive naturally, have a live birth and then not be able to do it again? I'm also curious about the definition? If you have had pregnancy losses after a live birth is this considered secondary infertility? Some sources suggest that it is. We had a live birth conceived naturally followed by 4 consecutive losses and now nothing for over over a year and never mind not having any answers for either the losses or why we don't know seem to be able to conceive anymore I don't even know what terminology I should be using for our situation! I'd also love to hear more on the emotional toil of secondary infertility. When you find yourself in a place where you don't fit in with your childless (for a variety of reasons) friends anymore and you can't be around people with multiple children, smaller children, bumps etc. You've written about how when you lose a pregnancy you see pairs of children everywhere, I'm now at a stage when my mum friends from my mat leave are now having child number 3. I feel like I am in a no mans land.

The second thing I would love to read from you is around membrane sweeps. What is the current evidence/research evidence around them? In what circumstance are they offered? Are they routinely offered and not if should they be? How effective are they and does it matter when they are given and by who etc? I'd also love to know if there is any national guidance on them. My local NHS trust won't give them in the hospital unless a Dr has medically advised you should have one. In what circumstances would/should a Dr do this? Should they be given if requested or should a hospital be able to have a policy such as the one in my trust? Are there any risks?

I nodded along like one of those bobble headed dogs you see in the back of cars to your piece Maybe I don't want another baby 'enough'. Every word resonated with my current thinking. Thank you for writing it.

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Nov 30, 2023Liked by Jennie Agg

There is so little on reproductive immunology out there, given it’s still considered a no-go by most of the NHS, yet so many women are undertaking it - pouring money they don’t have and a whole lot of hope and trust into the process - as they’ve been given, what feels like, no other options after multiple losses. It’s a gruelling physical and mental process and yet it’s never mentioned alongside IVF in terms of the impact of fertility treatment. Would love to see more written about this! Your writing is so brilliant, it always seems to perfectly articulate what I can’t!

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Maybe some analysis around the politics of surrogacy. I'm just experiencing my third miscarriage at the moment and while the decisions re: other types of assisted reproduction are far away for now, they are also unanswered and somewhat terrifying questions in my mind. As an ardent feminist, I'm not sure how to feel - I've seen lots of stories of surrogacy as empowering and lots of stories of surrogacy as exploitation. I can also feel my own desperation and need for certainty cloud my thoughts on it. Some trusted analysis would be great xx

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Nov 27, 2023Liked by Jennie Agg

I would like to hear more about women’s treatment during labour - by (often female) midwives. I lost count of how many times I was belittled, shamed, told off and told to stop my body from doing what it naturally needed to do - whilst in the throes of labour. I remember about 90seconds before my 2nd one was born, a midwife finally agreed to examine (my husband had asked c 7 times over the previous hour - they’d refusing thinking I was being dramatic) - when she commented “you’re 7cm, we need to move you to labour ward, whatever you do don’t push”. Next contraction, I pushed. I couldn’t not. Then I got a dressing down from the midwife because she didn’t want to have to deliver a baby on an antenatal ward at 1am when she had 5 other women to look after. Well guess what, neither did I.

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