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AMA

I can't have children and am writing a book about real womens' experiences of infertility & pregnancy loss. AMA

43 replies

bananafish81 · 12/07/2018 22:04

I'm a longstanding poster on the infertility boards, and sadly reached the end of the road with our infertility journey last year, when Drs on both sides of the Atlantic confirmed we had exhausted all our treatment options and my womb was unable to sustain a pregnancy. As such, the only way we could become parents would be through adoption, or surrogacy with our frozen embryos.

I wouldn't have got through the living nightmare that is infertility & miscarriage if it weren't for the incredible support of other women in the same boat. The infertility boards are our sanctuary from a world where childless women are excluded & ostracised, amongst women who get it. They help us feel less alone

This hidden community of women supporting each other is full of amazing, heartbreaking, inspirational stories - stories that don’t get told, because everyone only wants to hear about the success stories.

So I decided to write a book, to tell these stories, to try and change the narrative around infertility and pregnancy loss

I'm passionate about trying to talk about these issues openly, to try and reduce the stigma and raise awareness and understanding - and hopefully in turn, empathy.

Happy to answer any questions about being childless-not-by-choice, the experience of being told you can't have children, and anything else that might be interesting or useful. WanttobeMumsbutcantnet, so to speak.

OP posts:
Baubletrouble43 · 12/07/2018 22:08

Not a question as such but sending you best wishes and respecting you massively for undertaking this project. I suspect it will greatly help others x

Lipsticktraces · 12/07/2018 22:46

What’s the worst thing anyone has ever said to you about your infertility?

Asking as I have POF and needed to use a donor to achieve pregnancy. I think the age old “you can always adopt” was always the worst for me.

damnderek · 12/07/2018 22:47

How many times did you get told just to relax? Angry

damnderek · 12/07/2018 22:50

A friend of mine was going through fertility treatment. Self funded as her DH had children already. I actually heard another friend say to her 'oh I'm really struggling with 3, have one of mine', and 'will you adopt'

So so inappropriate. I don't know how she didn't deck her!

bananafish81 · 12/07/2018 23:03

@Baubletrouble43 thank you so much, that's really kind. That's very much the goal of the book

@Lipsticktraces I'm sorry about your POF - it sounds like you have pursued donor treatment? I hope you have been successful and wish you the very best with your journey

In response to your and @damnderek oh God yeah infertility bingo!

You get totally inured to the 'my brothers cousin's sister's hairdresser's secretary's neighbour's friend was trying for 17 years and had 14 IVF cycles and 15 miscarriages and they stopped trying and went on the adoption list and went on holiday and got drunk and relaxed and OMG they have natural quadruplets!' stories

And yes SO many 'why don't you just adopt' comments. 'Have you thought about adoption?' is a good one. Of course I've fucking thought about adoption! I didn't get 4 IVF cycles and 2 miscarriages in without thinking, hey, apparently there's this thing called adoption, I'd never thought about it before!! FFS

The 'it wasn't meant to be' and 'everything happens for a reason' are pretty awful. As though I've done something to deserve this agony.

Any sentence that starts with 'at least...' or 'have you tried....' will never go well

And of course there's the comments about being so lucky to have lie ins and holidays etc

I particularly enjoyed one person, when I mentioned we were £45,000 down on fertility treatment (and no bloody baby), telling me that I should have said something, he'd have sold me his kids for a fraction of the price

It's the 'they're not all they're cracked up to be' (that may be true, but I'd give anything to find out for myself) and 'I never knew real happiness until I was a mother' (and that's happiness I will likely never know) are probably up there off the top of my head

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damnderek · 12/07/2018 23:06

Just thought of one more.

A partner jerking a thumb at the other saying I'll lend you him; I only have to look at it to get pregnant!

bananafish81 · 12/07/2018 23:08

Oh actually, the worst recently was on a MN AIBU thread about NHS funding of IVF where one of the many posters arguing against IVF full stop (as there's so many children in need of homes, why don't infertile couples just adopt etc) saying that IVF was meddling with nature and in the past infertile people wouldn't have been able to breed, and were we storing up genetic problems by allowing couples to reproduce who historically wouldn't have been able to

Yeah - why don't we infertiles just DIE OUT!!

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Sittinonthefloor · 12/07/2018 23:13

What would be a good response from others when / if you tell them that you aren't able to have children?

bananafish81 · 12/07/2018 23:24

@Sittinonthefloor great question. I think it is perfectly fine to ask IF someone has children. I respond very honestly and say that very sadly we can't have children - that's my way of trying to deflect the 'oh you're so lucky' comments, by trying to signify that I'm childless not by choice.

What isn't fine is to pass comment on why that might be, or what they might do about it. Please don't tell us about your friend's miracle baby. Please don't tell us 'Never give up!' Please don't tell us 'well there's always adoption'

There's never going to be a universally 'right' thing to say, but if someone says they can't have children, simply not pushing the issue is generally going to be safest, as they may not wish to talk about it.

It's totally OK to not know what to say.

When I was going through treatment (about which I was very open), some of the most helpful comments were 'I don't know what to say - I'm so sorry, it must be really hard' or 'I know I can't understand what it must be like, but how can I best support you'

If someone simply says they can't have children then I'd say leaving if at that, and not trying to fix it, is always going to be appreciated.

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crosser62 · 17/07/2018 18:13

How do feel now? Now it's over I mean.
Do you feel peace or do you feel anger/heartbreak at the unfairness of it?
If you feel anger, how does that affect you day to day?
After that long, after such focus on that one thing, have you been able to "park" it all? How did you do this if you have?
Similar boat here but I know no one who has been through this so just curious about how others have ended up.
ThanksThanks

PurpleMac · 17/07/2018 18:26

How have you found having to deal with pregnancies in the family and friendship groups? Do you find people walk on eggshells around you, or lack tact?

Also, are you still looking for input into your book? My DH had secondary infertility so we were unable to have a child together and I have very strong feelings about why I would be unable to receive IVF on the NHS because of my husband's previous sexual activity Grin although we did go on to adopt rather than pursue any treatment.

DayManChampionOfTheSun · 17/07/2018 22:16

Hi bananafish81

I have been following you for a while on here and reading your inputs to (mainly aibu posts, but some infertility ones) threads. I dont really have a question for you but just wanted to say I have found your posts to always be really supportive and want to express my sincere thanks for that. Im about 2 years into this journey, not looking at treatment yet and currently out of action due to an unrelated illness which means I should avoid getting pg (almost laughed when she said that tbh, chance would be a fine thing eh!)

I truely hope your book is a success and I for one would be very keen to read it. Flowers

bananafish81 · 17/07/2018 22:58

@crosser62 I feel like I’m standing on a wobbly rope bridge across a chasm - I’ve left one side, but I’ve not yet reached the other. We have frozen embryos left on ice, that all have the potential to become people - but only if transferred into someone else’s body, as my womb is now unable to support a pregnancy. That route has many many issues and challenges, so I genuinely don’t know if that’s a path we will pursue. I’m never more acutely aware of the issues than when a thread in AIBU or Chat will pop up about surrogacy, and many many posters will argue that it should be banned outright (both altruistic and commercial alike), and that couples exploring surrogacy are cruel and selfish . I am keenly aware of the ethical concerns about surrogacy, and the complexities of the many many issues surrounding it, and it weighs heavily on me - which makes it even harder to decide how to proceed. There are many, many threads on MN where the ‘why don’t you just adopt’ comments get trotted out - usually from fertile people who had no issues conceiving their children, writing with great authority about what they would do if it were them.

So yes, I feel anger, heartbreak and despair. On the one hand I have mostly come to terms with the fact I will never be able to carry a child - because our decision to stop treatment was taken out of our hands. We didn’t have to think ‘just one more go’, because after cancelled cycle after cancelled cycle, we’d exhausted every option to try and get my womb to cooperate enough to even try one last transfer. If that hadn’t been the case, I have no doubt we’d have done 5 more cycles to use up all our frosties, because it would have been next to impossible to draw a line ourselves.

On the other hand, I don’t feel like I can yet accept completely giving up on every becoming a parent, because we have 5 potential humans, genetically 100% DH and I, waiting in storage. Clinically whilst every Dr agrees we have exhausted every option with my womb, they also agree that it is very very likely that we would have a successful outcome in someone else’s . One of the worst things about infertility & pregnancy loss is the never-ending cycle of hope and hopelessness: as the quote goes “I can take the despair. It's the hope I can't stand”. I may not have any hope of having a child myself, I can’t close the door completely, when I know there is still hope that we could still become parents through a different route.

Anger, it varies. Oddly enough whilst the obvious things used to trigger me (pregnancy announcements, bumps everywhere, someone saying they planned their pregnancy to line up with optimal mat. leave timings. etc), I’m mostly OK with those on a day to day basis - but the anger rises at the unexpected times. It’s comments like when someone on TV or IRL will casually say ‘when I have children’, Because it’s such an easy, natural thing for people to say, and I rage at the fact that I am defective. Or when a news article will report on the victims of a given tragedy, someone who has children will be described as ‘mother-of-three’, whilst a victim of the same crime who has no children will get much less acknowledgement, as though their loss doesn’t matter so much.

Parking it has been a massive issue. As we were coming to the end of the road, I remember feeling panicked about what the hell was I going to think about, or do with all my time, if I wasn’t thinking 24/7 about treatment or spending all weekend in my PJs on fertility forums, avoiding the outside world. I genuinely couldn’t remember what life was like Before Infertility - my identity was entirely wrapped up with being a professional infertile, I didn’t know who I was anymore. Certainly a significant part of me died during that time. I didn’t feel ready to start trying to reconnect with the wider world overnight, after having retreated from it for so long - so I needed to find something else to direct my internet time into, so that I didn’t jump straight from infertility world into surrogacy world. I started spending a lot of time on Pinterest trying to get fashion ideas, as I’d completely checked out on caring about anything like that, and found I was mid 30s with no idea of my style anymore!

And now I’m stepping back into infertility world, to try and write a book to change the narrative about infertility and pregnancy loss, and tell real women (and men’s) stories. Actually spurred on in part by all the childless-women bashing threads and the endless ‘why don’t you just adopt’ comments - but mainly to celebrate the incredibly sisterhood and solidarity amongst other women in a similar boat, that I’ve found in forums like the infertility boards on MN. There’s also undoubtedly a strong sense that I feel the need to ‘do something meaningful’, to feel like I have some kind of legacy (and hopefully to actually succeed in creating something, when I’ve been such an abject failure at creating life)

I wished I’d been able to read a book with stories from women whose journeys didn't all end with a baby. I wanted to read a book that would reassure me that eventually we would be OK - even if things didn't turn out how we'd hoped. That would help me feel that I wasn't alone.

I’m so very very sorry that you find yourself in a similar boat - you really, truly are not alone

I’m getting submissions from women sharing their own stories, and the consistent theme with everyone so far has been the sense of feeling so alone - when actually we’re all suffering from the same thing, but in isolation.

I’m not sure where you are in your journey, but I can recommend the uber barrens thread on MN, and Gateway Women as a fantastic community for women who are childless-not-by-choice

And I would be absolutely honoured if you would consider sharing your own thoughts and experiences, as I’d love to represent as many voices and POV as possible:

Website: uberbarrens.club/
About the book project: uberbarrens.club/book/
Share your story: uberbarrens.club/share

God, sorry for such a massive essay!!

Flowers Flowers Flowers

OP posts:
bananafish81 · 17/07/2018 23:09

Gah sodding mumsnet mangling the URLs - let's try again!

The working title is:
Über Barrens Club: Sisterhood, Solidarity & Support - Stories from the Club No One Wants to Join

Über Barrens Club - website

Über Barrens Club - about the book

Über Barrens Club - share your story

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Silversun83 · 18/07/2018 08:20

Thanks for sharing.. it is so important to get this message out there as it can often only be when you yourself or a close acquaintance go through infertility that you realise why you should never ask questions like "When are you going to have children?"

It must be hard being so 'close' (you just need a spare womb, simple!) and yet so far at the same time. Would you pursue surragacy if a friend or family member offered?

crosser62 · 18/07/2018 10:26

Thank you, I have filled in your questionnaire.
I understand a fair amount of what you say but can I ask why you have put together infertility and pregnancy loss? These seem chasms apart with little common ground.. other than no baby.
For me it was both, long periods of infertility then loss over & over again, I know no one else with these issues but I do not feel like I can relate to people with pure infertility other than awful guilt that I have been pregnant and they sadly have not. God that's so bizarre, feeling guilty for experiencing pregnancy even in my horrific circumstances!! I'm sorry I don't know what to say or how to say things properly, I'm rubbish.

GorgonLondon · 18/07/2018 15:13

banana I don't have anything of value to add but I wish you all the best with your book. It sounds like these stories should be told

PasstheStarmix · 18/07/2018 15:19

Op what a wonderfully strong and intelligent thread. You sound like an amazing woman and best of luck with your book. It sounds like it is going to inspirational and really help people.

PasstheStarmix · 18/07/2018 15:19

to be*

QuackPorridgeBacon · 18/07/2018 18:00

Nothing to add really but is surrogacy widely available or is it something that’s hard to get?

bananafish81 · 18/07/2018 18:06

@PurpleMac

"How have you found having to deal with pregnancies in the family and friendship groups? Do you find people walk on eggshells around you, or lack tact?"

God, it's awful. I find it really, really hard. Pregnancies much more so than babies. I find it really hard to deal with the fact that friends' lives are moving further and further away from us - their lives are moving on, and we're still stuck. Their lives quite understandably centre around their kids, playdates, birthday parties, meet ups with NCT friends etc, and we're just not part of that world. But we're not in a 20s partying, carefree stage of life - our lives as a childless-not-by-choice couple aren't the same as the lives of friends when they were still childfree. So we don't feel we belong anywhere, it's very isolating.

I seem to spend all my money on new baby presents as well! I must have spent hundreds and hundreds of £ on getting people new baby gifts, for child after child!

As to whether people walk on eggshells or lack tact - tbh for the most part, being open about our experiences has only been a good thing. It's not really fair to expect people to be extra sensitive to a situation they don't know about! Friends and family have generally been v supportive.

"Also, are you still looking for input into your book? My DH had secondary infertility so we were unable to have a child together and I have very strong feelings about why I would be unable to receive IVF on the NHS because of my husband's previous sexual activity grin although we did go on to adopt rather than pursue any treatment."

Yes, yes, yes, definitely looking for input! Very keen to understand the perspective of people who weren't able to have (or chose not to have) treatment, and have a dedicated section specifically for adoption after infertility and / or pregnancy loss

Would be delighted and honoured if you'd consider sharing any of your thoughts and experiences - there's also questionnaires for both the female and male perspective of infertility (regardless of which partner received the infertility diagnosis)

Both links on the 'Share your story' page :)

OP posts:
NC4T · 18/07/2018 18:07

What was the diagnosis/reason for your uterus not being able to sustain a pregnancy?

bananafish81 · 18/07/2018 18:14

@DayManChampionOfTheSun

Thank you so very much for your lovely message - that's so kind of you. I'm so sorry that you're walking down a similar path (and very sorry to hear you're suffering from an unrelated illness). I very much hope that you recover from your illness, and go on to have a successful outcome.

I am quite militant about jumping in on the AIBU threads (and being quite a vocal pain in the arse!), because I see so much ignorance and insensitivity around infertility - with comments ranging from the frustrating (infertility bingo anyone?!) to the downright hurtful (IVF is selfish, why don't childless couples just adopt, it's messing with nature etc etc). If even one person has cause to pause and think about what they're saying, then that's a win in my book.

Would love to include all different perspectives, so if you'd consider sharing your POV, all contributions would be very very welcome. Keeping fingers, toes and legs crossed for your recovery. Flowers

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bananafish81 · 18/07/2018 19:04

@Silversun83

"Thanks for sharing.. it is so important to get this message out there as it can often only be when you yourself or a close acquaintance go through infertility that you realise why you should never ask questions like "When are you going to have children?""

Thank you so much -that's exactly the goal. Most insensitive or hurtful comments don't come from a place of malice - they're said with (for the most part) the best of intentions. But as you say, it's only if we actually talk about this issues that we can raise awareness and open a more informed conversation about these issues.

"It must be hard being so 'close' (you just need a spare womb, simple!) and yet so far at the same time. Would you pursue surragacy if a friend or family member offered?"

You've hit the nail on the head there. The fact of the matter is that my answer would be yes, in a heartbeat. But that's from a place of desperation to have a baby. We have embryos, someone offers to look after our embryo for 9 months, result = baby (a surrogate on another thread talked about her experience of a surrogacy pregnancy as being like 'extreme babysitting'!) But the fact is that it's way more complicated than that. That's why clinics in the UK mandate implications counselling, and all cases have to be approved by the clinics ethics committee. DH is annoyingly right when he says that while it's very raw and we're acutely desperate and vulnerable, we're much more likely to make bad decisions - and not necessarily think more objectively about the different considerations and possible outcomes. Is it fair to put a family member or friend through the risks and rigours of pregnancy and birth just so that we can have a child? They wouldn't be offering to go through it if my womb worked - so if anything happened, it would be all on us.

Most of the comments on a recent thread about surrogacy (WRT to Tom Daley and his husband announcing the birth of their son) were primarily around the ethics of commercial surrogacy - some posters made a differentiation between this and truly altruistic surrogacy. However many expressed their disgust for it as a practice altogether - these are just a few examples from that thread (a few weeks ago, in Chat):

"I just feel morally, it’s wrong to create another life when an existing life should be prioritised. There are thousands and thousands of children needing adoption. Whether the parents involved are gay or straight is besides the point."

"I don’t agree with surrogacy. For anyone. Male, female, heterosexual or homosexual."

"Surrogacy is similar to sex work to me"

"I don't support surrogacy for gay couples or heterosexual couples unless it's for a close friend or family member."

"I don’t agree with surrogacy. For anyone. Male, female, heterosexual or homosexual."

"It's buying and selling humans. Even in the UK most surrogates are paid, the 'expenses' rule is easily worked around.

People comparing it to prostitution, at least with (most/legal) prostitution your not involving a child that has no consent in the matter.

If couldn't have had kids I would not have bought one. I wouldn't have adopted either as I didn't think I could support a child with potentially complex issues. I would have just had to accept I can't have kids, because having a child isn't a right and you can't reduce it to the level of buying puppy."

"I deplore surrogacy and actually feel worse about women who "use" surrogates than men."

"Its like the handmaids tale using certain women to reproduce. Thats all they're good for. Baby machines."

So it's a very complex issue, and I don't know what the answer is Sad

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bananafish81 · 19/07/2018 08:26

@crosser62

Thank you, I have filled in your questionnaire.

Thank you so very much - I hope that I can do your stories justice

I understand a fair amount of what you say but can I ask why you have put together infertility and pregnancy loss? These seem chasms apart with little common ground.. other than no baby.
For me it was both, long periods of infertility then loss over & over again, I know no one else with these issues but I do not feel like I can relate to people with pure infertility other than awful guilt that I have been pregnant and they sadly have not. God that's so bizarre, feeling guilty for experiencing pregnancy even in my horrific circumstances!! I'm sorry I don't know what to say or how to say things properly, I'm rubbish.

Oi, you're not rubbish and don't say that! You're expressing yourself perfectly. And the fact is that guilt is a HUGE part of the experience. Not just guilt for feeling like we can't get or stay pregnant (in many cases), but guilt for how we feel about the issues and our own position within that narrative. The primary vs secondary infertility issue is one such example. It's really bloody hard! Please don't be so hard on yourself. We all need to stick together, and ultimately I believe we are all in it together

I'm really really interested in your experience of infertility and pregnancy loss feeling like chasms apart - that's certainly not my experience, BUT that doesn't mean your experience isn't valid. We all have our own stories and takes and that's precisely what I'd like to represent

In my experience, and experience on lots and lots of infertility related groups, infertility and pregnancy loss very much go hand in hand. Whether you struggle to get or stay pregnant, the result is, as you say, the same - no baby. It's not a relay race where you get to pick up where you left off - the isolation of not being able to have a baby, of being surrounded by pregnancy announcements and friends popping out babies, and the heartbreaking agony of wondering if you will ever be able to become a parent - they seem pretty common experiences for many. There's also a significant overlap - many many people with infertility will have experienced pregnancy loss at some point. You don't get a prize for just getting pregnant - if you can't stay pregnant, the net result is the same. The only time I felt there was a difference was amongst miscarriage threads where there were people with recurrent miscarriage who conceived very easily, so for them 'TTC again' was very straightforward, and it was a case of 'when' they were next pregnant, not if. Their snakes and ladders were a bit shorter than when it had taken you 3 IVF cycles to get to that point, but it's not infertility or pregnancy loss Olympics. The net result is still the same.

Please be kind to yourself Thanks

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