They said: ‘I’ve never seen anything like this before’.
The reason this particular comment meant so much to me is that this is exactly what I’m trying to do here, with this newsletter. I want to share writing and stories about fertility and pregnancy that might not otherwise find a home.
So, with this in mind, I’m throwing it over to you:
What are the aspects of fertility, pregnancy, and reproductive health that you think don’t get enough airtime?
What have you not read about, or heard people talking about - but wondered if others felt the same?
Is there a topic you would like me to explore, with my journalist hat on (i.e. doing some digging, speaking to experts)?
As always, I’d love to hear from you. You can also email me privately if you would rather not comment publicly here. On which note, in order to add an extra layer of privacy to these community discussions, from next week, these are going to be for paying subscribers only. I think for most of you who are regular commenters, this will mean nothing much changes, as you’re already paying to support my work here, but if you’ve been meaning to upgrade and just not got round to it yet, consider this a handy (gentle) reminder to do so, if you’d like to keep getting these Monday posts.
And, finally, if you’d like to participate in the discussion, but really cannot justify the extra money right now, please email and I will comp you a subscription, no questions asked.
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.
Completely. The lack of concrete/useful knowledge in this area is astounding. And what we do know rarely gets relayed to people at a young age. (I vaguely remember interviewing a doctor years ago who said something like: there’s a whole mythology around the Pill affecting fertility which is likely to stem from women often being prescribed the Pill when they’re much younger to ‘treat’ issues to do with periods - and it’s those issues that have the impact on fertility, not the Pill, the Pill was just masking those issues, iyswim?) Xx
And sex education which focuses more widely than on scaring teenagers to avoid them getting pregnant... Or, is at lest explicit in that being its aim. None of what I was taught at school, on that topic, has served me at all as a teen or adult!
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.
THIS - 100 per cent, this. It’s shockingly fragmented. Tbh, I’ve also heard that bedside manner and care can still be less than joined up and compassionate, even in the private IVF world, which is inexcusable, really. I’m actually giving a talk next year about communication between professionals and recurrent miscarriage patients, so I will definitely have this one on my agenda! Xxx
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.
I think you’re right about termination for medical reasons - though I think slowly that separateness is changing. (I know some of the pregnancy loss charities have taken steps to make it clear they support this kind of loss).
And couldn’t agree more about when do you stop, how do you know, etc. I wonder if partly it’s because it becomes too difficult to acknowledge - that someone had to stop before they got what they wanted. And also because perhaps it’s hard to say definitively ‘enough’ and by the time the decision is ‘made’ for you, it feels hard to go over it again? Xxx
Also to be considered is there is absolutely no support or guidance from fertility clinics/doctors on this point -- no off-ramps from treatment offered, no post-treatment counselling, etc. They are happy to keep on taking your money as long as you're willing to open your wallet (and encouraging you to try different things while doing so), but once you tell them you're done (or just stop calling to make that next appointment), you never hear from them again.
Good point - I can't speak from experience, but I suspect it varies clinic to clinic, doctor to doctor. In general though, I think the emotional and psychological support across the board in this area lags behind. It really ought to be a standard requirement, I think. ESPECIALLY given the amounts charged in private practice. xxx
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!
This is a really good point. There is, in my experience, a general misunderstanding that IVF is the cure-all for anything related to reproductive health. (I remember some people being a little confused that IVF wouldn’t really improve matters in our case). So I agree any other kind of fertility treatment is sort of relegated - or invisible. Will definitely give this one some thought. Thank you for commenting! Xxx
I don't know if this is helpful, but if you can ask your gp for a referral to Siobhan Quenby, I'd recommend. She treats recurrent miscarriage but also really rates ivf and doesn't want to waste people's time. You might be able to go for a second opinion if you don't meet the usual referral criteria.
We went for a second opinion with her and she was helpful. I don't know if it will 'work' but she was prepared to try things and we felt heard. We left with something to try after years of unexplained infertility and then recurrent miscarriage. She operates in the space I think you are talking about, of not full ivf.
She's not super woman, but she is compassionate and well-informed. And it's usually done via telephone, which makes life easier!
Sorry if not the space for 'advice', please did disregard if not helpful, I just wish I'd known what she did a year ago!
I'm so very sorry Aisling. I would second Sarah's recommendation. I self referred to Prof Quenby and Prof Brosen in Coventry. I paid (a relatively small fee which covered everything) they're leading experts in this field and their advice invaluable xxx
I think we may be talking about 2 different things -I would recommend seeing Prof Quenby via NHS referral, which is free, not the Implantation Clinic, which is self-funded. The Implantation Clinic is now run by Prof Brosens, not Prof Quenby and I cannot recommend seeing him, although the tests may be useful to some people, they won't be for everyone and they now make no further referrals or recommendations themselves (I got the try, try, try again talk...) as Prof Brosens only looks at the implantation tests.
I would recommend Prof Quenby as a first stop, as she'll give wider consideration (Implantation Clinic is very focused on implantation failure). She may recommend the Implantation Clinic (they both use the Tommy's Clinic facilities at University Hospital Coventry and Warwickshire) but as she has a broader eye (and has done studies in most things herself, so really knows the research) I'd start there.
You can now only see Prof Quenby via NHS referral from GP. Approx 4-5 month waiting list for initial appointment (you self-book, they just book that far in advance; follow-ups can be arranged in about a week), and there is no cost.
Of course, you can do both simultaneously, I did, (so had the Implantation biopsy whilst waiting for my appointment). I just wouldn't recommend going straight to Implantation Clinic as you may not need to.
Ahhh ok, when I saw them I couldn't be referred on the NHS (the Tommy's recurrent miscarriage clinic at St Mary's recommended I self refer to them) and I saw them both and not just for implantation. That's brilliant if you can now be referred on the NHS. I found them both to be highly knowledgeable.
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.
Infantilisation is absolutely a glaring theme in all of this. One of my most hated things when going through a suspected miscarriage is that it's standard procedure to assume or even insist that you 'might have your dates wrong'. The idea that a woman cannot know her body that well, or be a reliable witness to something like when she conceived/ when her last period was is.... beyond insulting. And it's definitely part of a broader picture, as you point out. xxx
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!
It's insane, isn't it, that we don't know more about why ectopic pregnancies happen, when they are so dangerous for the woman or pregnant person. I'm so sorry you went through all of this. The postcode lottery of mental health support is a really good suggestion for a piece. As is what exists in terms of support when it comes to stopping trying - I haven't come across any specialist services yet, but that doesn't mean they don't exist. Definitely one to look into. Thank you for all the suggestions! xxx
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.
I could not agree more. It's something I'm always very conscious of, given how my own story has gone, because it could very easily play into that problem of only certain 'endings' being allowed any airtime. I've actually just finished reading an essay collection which is very, very good on this question of when a rainbow never arrives, and what that alternative future without children looks like. Will share soon! xx
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
Oh this is such an important topic - I agree! As for actual figures… I know that something The Lancet miscarriage series from a few years ago pointed out was how we don’t really have any long-term data on miscarriage/recurrent miscarriage, and I would imagine workplace stuff falls within that. But I will definitely put this on my list of things to look into for next year. Apart from anything else, it’s very close to my heart, as I know my own experiences resulted in a career shift that I don’t know would have happened otherwise. Not because my workplace weren’t brilliant about it all, but more because it just becomes such a lot to cope with, appointments take time etc. (And there is a little bit about the workplace in the book, later on!) xx
Yeah, the lack of data is so, so frustrating! One of the studies on careers in academia found trends with people (especially women) with children were more likely to have transitioned to other jobs and it was immediately assumed that the lack of childcare etc. was at the origin. The impact of fertility and miscarriage are never even considered as an option of impacting career choices. The invisibility is just infuriating. Anyway, I look forward to reading the rest of your book (I get a bit emotional reading it, hence I've been a bit slow...). xx
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
Absolutely. This is a really good suggestion. Age gaps are such a difficult thing, when conceiving and pregnancy aren't straightforward for you. Personally, I've found it very difficult to engage in conversations around 'ideal' age gaps or really allow myself to consider what I might prefer, because any idea of preference has become so far removed from my experience of pregnancy and birth.
And fwiw, I absolutely think you *would* be entitled to experience a quicker-than-expected conception with mixed feelings, because while it might be better than the alternative, ultimately it's not what you'd choose, if you could. I know I found pregnancy such a heightened, exhausting state, I could not begin to contemplate doing it again, until my son was nearly two. And I was very aware that I had the luxury of that time, as someone who - as yet - has not had to go through assisted conception. xxx
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.
Thank you - I'm so glad that part of the book resonated. I agree, I would like to read more about parenting afterwards from a longer perspective. Personally, I find writing about parenting now quite a tricky balancing act, out of wanting to protect my son's right to his own story etc. But that doesn't mean it's impossible.
The longer-term impact on health is another tricky one. As far as I know, the best evidence is for a potential increased risk of cardiovascular disease, but it's not very clear why yet. I did write a newspaper piece on this, earlier this year, but I know that some people found it upsetting to read, because it felt a bit like 'great, more terrible news' when I'm already dealing with something so soul-destroying. Which I completely understand. On the other hand, I'm not sure that's a reason for the medical profession to just ignore this as a subject. (And also not a reason for me to shy away from it here, either - it's definitely a topic I will add to my list!) xxx
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. ;-(
I could talk for HOURS about induction of labour. And I am so sorry you've had to process all of that. There is actually a section in my book about induction (that's not meant to be a plug) and something I discovered while writing that chapter is that there is basically no data on women's long-term wellbeing and quality of life after induction - a gap that's acknowledged by the NICE guidance, and yet.... what a gap!!
Again, I think this is such an important and complicated subject. I was induced with my son and had a really positive experience, however, I know that's far from the case for many women and in general I think information and communication around induction is often very, very poor. I suspect one of the reasons I had such a positive experience is that I was probably very close to going into labour spontaneously any way (as well as it feeling like the least bad option, when I was so unbearably anxious by that point in my pregnancy). The obvious underlying problem (speaking very much as a non-expert) is that we don't really have a sophisticated understanding of what happens in the body to trigger labour or why inductions work in some cases but not others. xx
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.
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!
Oh goodness...this one is a minefield, I agree. There's a section on this in my book (not a plug) and, even after interviewing multiple people about it, and reading into it, I still don't know what I think. It's incredibly frustrating because, as one expert said to me, there probably are women for whom there's an immunological cause for miscarriages, however the evidence is really complicated and often over-interpreted by the private sector. Adding this one to my list! xx
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
I’m so sorry you’re going through this again. And thank you for the suggestion, I will give it some thought. It’s such a difficult subject - and so often a lot of analysis and comment around it comes down very hard on that empowering/exploitation binary. Often, too, people tend to lump commercial surrogacy together with altruistic surrogacy (the only kind that is possible in the UK). Xxx
Thank you so much, I was reading your book through the early pregnancy and then the loss and and I just want to say a massive thank you, I found it so comforting and I appreciate your ability to parse all the research (and lack thereof!) so much. It's a real gift you've given the community. I'm so sorry for everything you went through too. Totally agree on the binary, I live in Ireland and we don't actually have any laws surrounding surrogacy at all, which makes even altruistic tricky as the intended mother would have no legal rights and would have to undergo an adoption process. I also wonder sometimes if banning, rather than properly regulating, commercial surrogacy leads to the exploitation just happening in other places, mostly lower income countries. Mostly I'm just so sad at the desperation, panic and loneliness this third loss has brought. Thanks again for creating the space for people to connect through it all xx
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.
This is a huge problem, with so many nuances and difficulties. And I'm so sorry you were treated like this. I know there are midwives who feel increasingly broken by the system they work in and the kind of care they're having to offer, which feels completely at odds with what the job they set out to do is meant to be. Will need to have a real think about this one. xxx
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
Completely. The lack of concrete/useful knowledge in this area is astounding. And what we do know rarely gets relayed to people at a young age. (I vaguely remember interviewing a doctor years ago who said something like: there’s a whole mythology around the Pill affecting fertility which is likely to stem from women often being prescribed the Pill when they’re much younger to ‘treat’ issues to do with periods - and it’s those issues that have the impact on fertility, not the Pill, the Pill was just masking those issues, iyswim?) Xx
And sex education which focuses more widely than on scaring teenagers to avoid them getting pregnant... Or, is at lest explicit in that being its aim. None of what I was taught at school, on that topic, has served me at all as a teen or adult!
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.
THIS - 100 per cent, this. It’s shockingly fragmented. Tbh, I’ve also heard that bedside manner and care can still be less than joined up and compassionate, even in the private IVF world, which is inexcusable, really. I’m actually giving a talk next year about communication between professionals and recurrent miscarriage patients, so I will definitely have this one on my agenda! Xxx
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.
I think you’re right about termination for medical reasons - though I think slowly that separateness is changing. (I know some of the pregnancy loss charities have taken steps to make it clear they support this kind of loss).
And couldn’t agree more about when do you stop, how do you know, etc. I wonder if partly it’s because it becomes too difficult to acknowledge - that someone had to stop before they got what they wanted. And also because perhaps it’s hard to say definitively ‘enough’ and by the time the decision is ‘made’ for you, it feels hard to go over it again? Xxx
Also to be considered is there is absolutely no support or guidance from fertility clinics/doctors on this point -- no off-ramps from treatment offered, no post-treatment counselling, etc. They are happy to keep on taking your money as long as you're willing to open your wallet (and encouraging you to try different things while doing so), but once you tell them you're done (or just stop calling to make that next appointment), you never hear from them again.
Good point - I can't speak from experience, but I suspect it varies clinic to clinic, doctor to doctor. In general though, I think the emotional and psychological support across the board in this area lags behind. It really ought to be a standard requirement, I think. ESPECIALLY given the amounts charged in private practice. xxx
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!
This is a really good point. There is, in my experience, a general misunderstanding that IVF is the cure-all for anything related to reproductive health. (I remember some people being a little confused that IVF wouldn’t really improve matters in our case). So I agree any other kind of fertility treatment is sort of relegated - or invisible. Will definitely give this one some thought. Thank you for commenting! Xxx
I don't know if this is helpful, but if you can ask your gp for a referral to Siobhan Quenby, I'd recommend. She treats recurrent miscarriage but also really rates ivf and doesn't want to waste people's time. You might be able to go for a second opinion if you don't meet the usual referral criteria.
We went for a second opinion with her and she was helpful. I don't know if it will 'work' but she was prepared to try things and we felt heard. We left with something to try after years of unexplained infertility and then recurrent miscarriage. She operates in the space I think you are talking about, of not full ivf.
She's not super woman, but she is compassionate and well-informed. And it's usually done via telephone, which makes life easier!
Sorry if not the space for 'advice', please did disregard if not helpful, I just wish I'd known what she did a year ago!
I'm so very sorry Aisling. I would second Sarah's recommendation. I self referred to Prof Quenby and Prof Brosen in Coventry. I paid (a relatively small fee which covered everything) they're leading experts in this field and their advice invaluable xxx
Hello,
I think we may be talking about 2 different things -I would recommend seeing Prof Quenby via NHS referral, which is free, not the Implantation Clinic, which is self-funded. The Implantation Clinic is now run by Prof Brosens, not Prof Quenby and I cannot recommend seeing him, although the tests may be useful to some people, they won't be for everyone and they now make no further referrals or recommendations themselves (I got the try, try, try again talk...) as Prof Brosens only looks at the implantation tests.
I would recommend Prof Quenby as a first stop, as she'll give wider consideration (Implantation Clinic is very focused on implantation failure). She may recommend the Implantation Clinic (they both use the Tommy's Clinic facilities at University Hospital Coventry and Warwickshire) but as she has a broader eye (and has done studies in most things herself, so really knows the research) I'd start there.
You can now only see Prof Quenby via NHS referral from GP. Approx 4-5 month waiting list for initial appointment (you self-book, they just book that far in advance; follow-ups can be arranged in about a week), and there is no cost.
Of course, you can do both simultaneously, I did, (so had the Implantation biopsy whilst waiting for my appointment). I just wouldn't recommend going straight to Implantation Clinic as you may not need to.
Ahhh ok, when I saw them I couldn't be referred on the NHS (the Tommy's recurrent miscarriage clinic at St Mary's recommended I self refer to them) and I saw them both and not just for implantation. That's brilliant if you can now be referred on the NHS. I found them both to be highly knowledgeable.
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.
Infantilisation is absolutely a glaring theme in all of this. One of my most hated things when going through a suspected miscarriage is that it's standard procedure to assume or even insist that you 'might have your dates wrong'. The idea that a woman cannot know her body that well, or be a reliable witness to something like when she conceived/ when her last period was is.... beyond insulting. And it's definitely part of a broader picture, as you point out. xxx
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!
It's insane, isn't it, that we don't know more about why ectopic pregnancies happen, when they are so dangerous for the woman or pregnant person. I'm so sorry you went through all of this. The postcode lottery of mental health support is a really good suggestion for a piece. As is what exists in terms of support when it comes to stopping trying - I haven't come across any specialist services yet, but that doesn't mean they don't exist. Definitely one to look into. Thank you for all the suggestions! xxx
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.
I could not agree more. It's something I'm always very conscious of, given how my own story has gone, because it could very easily play into that problem of only certain 'endings' being allowed any airtime. I've actually just finished reading an essay collection which is very, very good on this question of when a rainbow never arrives, and what that alternative future without children looks like. Will share soon! xx
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
Oh this is such an important topic - I agree! As for actual figures… I know that something The Lancet miscarriage series from a few years ago pointed out was how we don’t really have any long-term data on miscarriage/recurrent miscarriage, and I would imagine workplace stuff falls within that. But I will definitely put this on my list of things to look into for next year. Apart from anything else, it’s very close to my heart, as I know my own experiences resulted in a career shift that I don’t know would have happened otherwise. Not because my workplace weren’t brilliant about it all, but more because it just becomes such a lot to cope with, appointments take time etc. (And there is a little bit about the workplace in the book, later on!) xx
Yeah, the lack of data is so, so frustrating! One of the studies on careers in academia found trends with people (especially women) with children were more likely to have transitioned to other jobs and it was immediately assumed that the lack of childcare etc. was at the origin. The impact of fertility and miscarriage are never even considered as an option of impacting career choices. The invisibility is just infuriating. Anyway, I look forward to reading the rest of your book (I get a bit emotional reading it, hence I've been a bit slow...). xx
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
Absolutely. This is a really good suggestion. Age gaps are such a difficult thing, when conceiving and pregnancy aren't straightforward for you. Personally, I've found it very difficult to engage in conversations around 'ideal' age gaps or really allow myself to consider what I might prefer, because any idea of preference has become so far removed from my experience of pregnancy and birth.
And fwiw, I absolutely think you *would* be entitled to experience a quicker-than-expected conception with mixed feelings, because while it might be better than the alternative, ultimately it's not what you'd choose, if you could. I know I found pregnancy such a heightened, exhausting state, I could not begin to contemplate doing it again, until my son was nearly two. And I was very aware that I had the luxury of that time, as someone who - as yet - has not had to go through assisted conception. xxx
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.
Thank you - I'm so glad that part of the book resonated. I agree, I would like to read more about parenting afterwards from a longer perspective. Personally, I find writing about parenting now quite a tricky balancing act, out of wanting to protect my son's right to his own story etc. But that doesn't mean it's impossible.
The longer-term impact on health is another tricky one. As far as I know, the best evidence is for a potential increased risk of cardiovascular disease, but it's not very clear why yet. I did write a newspaper piece on this, earlier this year, but I know that some people found it upsetting to read, because it felt a bit like 'great, more terrible news' when I'm already dealing with something so soul-destroying. Which I completely understand. On the other hand, I'm not sure that's a reason for the medical profession to just ignore this as a subject. (And also not a reason for me to shy away from it here, either - it's definitely a topic I will add to my list!) xxx
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. ;-(
I could talk for HOURS about induction of labour. And I am so sorry you've had to process all of that. There is actually a section in my book about induction (that's not meant to be a plug) and something I discovered while writing that chapter is that there is basically no data on women's long-term wellbeing and quality of life after induction - a gap that's acknowledged by the NICE guidance, and yet.... what a gap!!
Again, I think this is such an important and complicated subject. I was induced with my son and had a really positive experience, however, I know that's far from the case for many women and in general I think information and communication around induction is often very, very poor. I suspect one of the reasons I had such a positive experience is that I was probably very close to going into labour spontaneously any way (as well as it feeling like the least bad option, when I was so unbearably anxious by that point in my pregnancy). The obvious underlying problem (speaking very much as a non-expert) is that we don't really have a sophisticated understanding of what happens in the body to trigger labour or why inductions work in some cases but not others. xx
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.
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!
Oh goodness...this one is a minefield, I agree. There's a section on this in my book (not a plug) and, even after interviewing multiple people about it, and reading into it, I still don't know what I think. It's incredibly frustrating because, as one expert said to me, there probably are women for whom there's an immunological cause for miscarriages, however the evidence is really complicated and often over-interpreted by the private sector. Adding this one to my list! xx
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
I’m so sorry you’re going through this again. And thank you for the suggestion, I will give it some thought. It’s such a difficult subject - and so often a lot of analysis and comment around it comes down very hard on that empowering/exploitation binary. Often, too, people tend to lump commercial surrogacy together with altruistic surrogacy (the only kind that is possible in the UK). Xxx
Thank you so much, I was reading your book through the early pregnancy and then the loss and and I just want to say a massive thank you, I found it so comforting and I appreciate your ability to parse all the research (and lack thereof!) so much. It's a real gift you've given the community. I'm so sorry for everything you went through too. Totally agree on the binary, I live in Ireland and we don't actually have any laws surrounding surrogacy at all, which makes even altruistic tricky as the intended mother would have no legal rights and would have to undergo an adoption process. I also wonder sometimes if banning, rather than properly regulating, commercial surrogacy leads to the exploitation just happening in other places, mostly lower income countries. Mostly I'm just so sad at the desperation, panic and loneliness this third loss has brought. Thanks again for creating the space for people to connect through it all xx
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.
This is a huge problem, with so many nuances and difficulties. And I'm so sorry you were treated like this. I know there are midwives who feel increasingly broken by the system they work in and the kind of care they're having to offer, which feels completely at odds with what the job they set out to do is meant to be. Will need to have a real think about this one. xxx