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

[bananafish81]

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.

Hi banana just wanted to say how much I appreciate your posts. Very much looking forward to your book and so pleased you’re writing it. Promise to let all your MN supporters know when we can buy a copy.

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.

This is my place too, at the moment. Thanks for taking on the project. I've filled your questionnaire this morning.

Hi banana, I have posted on the infertility threads sporadically over the years and I just wanted to say that I have always found your posts so eloquent and moving. The book is a fantastic idea. My question is, have you any intention to share it with professionals working in the field? Some of the most insensitive comments I've heard came from doctors who displayed a stunning lack of awareness despite this business being Their Whole Damn Job.

@GorgonLondon @PasstheStarmix

Thank you so very very much for your very kind words - they really do mean a great deal. Just hope I can actually write the bloody thing! I'm beyond moved at the responses that are coming in (thank you to the posters on this thread that have shared their thoughts), and so very inspired by the eloquence and emotion in their words. I really hope I can make a decent stab at this - and that I can do these amazing stories justice.

@NC4T

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

Sadly I don't have one. We know exactly WHAT the problem is, but unfortunately we don't know WHY. I have completely baffled the top fertility specialists. My womb lining doesn't thicken properly, but more problematic is the fact that it doesn't regenerate properly: even if we do get it to thicken, it seems to break down and get reabsorbed, instead of being shed as a menstrual bleed (I don't get a proper period, just some black gunk). So my lining just isn't working as it should, and seems to be unable to support a pregnancy.

My lining issues got worse and worse, so that we ended up having something like 7 cancelled transfer cycles, that we had to abandon because my lining wouldn't thicken up, despite trying every conceivable (haha) test and treatment, incl some pretty experimental stuff. The only thing we hadn't tried was very very experimental stem cell treatment - which would have involved having lipo, culturing stem cells from the fatty tissue, then transplanting the stem cells into my womb lining, to try and encourage the womb lining to regenerate with new cells. Which I did look into, but no Dr would do! So we couldn't even get off the starting blocks - we only had 4 IVF cycles and 2 miscarriages before reaching the end of the road, as my uterus just wouldn't cooperate to try any more transfers. We make great embryos - the buns are great, but the oven is on the blink.

The world's leading expert into the role of womb lining in infertility and miscarriage said that I was 'the weirdest case he'd ever seen', and that he had absolutely no idea what was going on. He said that statistically, with persistence, most couples do get there eventually - but that persistence can mean 10+ IVF cycles or miscarriages, and that comes at an enormous cost (physically, emotionally & financially). So he said that he rarely tells a couple that from a clinical POV that he recommends they stop trying - but he said that I was a case entirely on my own. He said there was absolutely no point in continuing with any further treatment, and that we had exhausted all our options, and that the only sensible way forward was to pursue surrogacy with our frozen embryos (or adoption, or give up entirely on ever becoming parents).

Not having a diagnosis is one of the most frustrating things - although even if we did, I don't think there's anything left we haven't already tried! Sadly, as DH observed, we'll probably never find a reason why, it's likely 'just because'.

I would urge anyone who has suffered or is suffering from infertility to check out Banana’s website & questionnaire, it was wonderfully cathartic experience to actually answer all the questions xx

Me having done your questionnaire has actually sparked some quite nice conversation with my DH today, so I'm thankful for that, too. It can easily become one of those things we don't want to mention to each other in an attempt not to upset. He says he will look into filling it himself, as well.

Thanks for answering bananafish. That sounds so so hard. I had a couple of years of subfertility between DS1 and DS2 and it took up my entire brain and emotional capability. It was the worst 2 years of my life and actually I was so lucky. I don't know how you've coped. Thank you for sharing your experiences.

Thank you so much for telling us about your experience bananafish

@QuackPorridgeBacon

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

So sorry for late replies, have been manic at work and wanted to give these (great) questions a proper response

The answer to this is that it's very very difficult

Surrogacy in the UK is altruistic only - surrogates must receive payment for reasonable expenses, but cannot be paid for the pregnancy and delivery itself (although some people argue that the expenses may be perceived as payment by another name, as typical expenses are around the region of £15,000)

Crucially, it is illegal in the UK to broker a surrogacy match, and any surrogacy arrangemen is based entirely in trust and friendship - there is no legal provision for surrogacy agreements. What this means is that unless a friend or family member offers to be a surro, then it's based on strangers becoming friends and trusting each other. Agencies can't broker any arrangements, and more and more surrogacy matches happen via closed FB groups where surros and IPs get chatting and if they get on, may decide to 'match' and pursue a surrogacy arrangement. So it's not unlike dating in that respect.

This is obviously unregulated and both surros and IPs have little to no protection under the law. The surro is the legal mother at birth, until a parental order is granted (which can take up to a year in some cases). In practice things rarely go wrong (although these are the stories that make the news, of course), but legally the surro has no guarantee that IPs will pay her expenses or that they won't change their mind and leave them with a baby, and the IPs have no guarantee the surro won't change her mind.

In practice, this very rarely happens and the vast majority of UK matches have very happy endings - the groups are full of beautiful stories of incredible friendships between surros and IPs, and of families being made. But it's foolish not to acknowledge that the law doesn't protect either party. There were two cases within the space of 6 weeks on one of the groups last year that really stuck out for me : one where the surro terminated at 13 weeks without telling the IPs till afterwards (absolutely her right and her bodily autonomy, but very difficult nonetheless) and one where the surro changed her mind during the pregnancy and decided to keep the baby and raise in a co-parenting relationship with the two intended fathers.

Both cases were traditional surrogacy (the surro's own eggs, conceived via home insemination) rather than gestational surrogacy (surrogate has no genetic relationship to the baby) - if undergoing GS with a UK fertility clinic, all cases have to be approved by the ethics committee and all parties have to undergo implications counselling. I don't know if counselling was undertaken in these TS cases or not, or whether it would have made any difference if it had. But it's certainly the fear that every IP has about surrogacy. The fact is that for the vast vast majority of surros, they absolutely don't see the baby as theirs - @mustbemad17 was a surro (and has just recently had her own DC2, she is one amazing woman!) and I loved her description of surrogacy as 'extreme babysitting'. The surros I have spoken to find the idea that they'd keep the baby laughable - most say that if they wanted another child, they'd have one of their own, not keep someone else's! They describe it not as giving the baby up or away, but as giving the baby back to its parents.

A friend of a friend is really keen to be a surro and offered to surro for us, however unfortunately it's looking like physically this won't be a viable option (when she was sterilised after having her 4th child, she was advised that this wouldn't prevent her from being a gestational surrogate. However there are two methods of female sterilisation - and it turns out on further consultation with fertility specialists that the method she had can create complications in pregnancy, so very sadly it's looking like she's not going to be able to achieve her dream of doing 4 surrogacy journeys - one for each of her children).

So if we were to pursue surrogacy, we would have to get on the 'surrogacy dating scene', and hope that someone picks us to be their IPs, and hope that there is a strong connection & bond for what will be a lifelong friendship). Which carries huge uncertainties, risks, ethical considerations - and could take years to find a match (or might never find 'the one')

The alternative is to go abroad - Ukraine and Georgia are terrifying as it's commercial exploitation of vulnerable women.

The US is much more regulated with much greater provision for surrogates' wellbeing and welfare, and pre birth orders provide a measure of legal protection for both parties. But that obvs has enormous ethical considerations - as well as costing approx £150,000-200,000.

And you just have to scroll up thread to see some of the recent comments on one MN thread about surrogacy, to see how it's perceived.

So in summary - no, it's very very much not widely available, very hard to access, and very complicated.

This is fascinating - and heart-rending - thank you for the information.

bananafish81 Wow, this is all fascinating but sad at the same time. I’ve always known that you can’t be paid but can get money for expenses. I think it’s similar when donating eggs, so you don’t eat paid but get giving money for travelling and being out of work etc. It must be so scary though because for those nine months and even after the birth you could lose your baby, or as a surrogate you could be left with a baby that you didn’t plan for. I believe it should be legal in a sense because there will always be people needing or those willing to carry the baby and having a contract or something will at least make it safer for all round. I guess that mustn’t be possible though given how risky pregnancy and birth can be. It’s tough, I think I’d happily carry a baby for a friend or my daughter if they couldn’t themselves, not sure I could put myself through so much for someone I barely know, I think I’d get too attached and broody lol I think it takes someone strong to be a surrogate, definitely.

Bless you bananafish81 but nothing amazing here! The two cases you highlighted are extreme; if the first is one i know of she was an experienced surrogate? If its who i am thinking of - could be wrong - then sadly she is a prime example of IPs being held to ransom by their surrogate.
The second obviously has been thrashed around a lot, but the surrogate was badly supported by somebody held in high esteem by many.

Mostly ime surrogates are just women who have completed their family - usually very important for obvious reasons - but enjoy pregnancy. As a TS I had no structured counselling, altho an indepth discussion with my GP took place. Would counselling stop examples as above? Well perhaps because it would come apparent the first surro was a selfish narcissist, & the second was being badly advised. That said, counselling only goes so deep. So no guarantees

@ferntwist

Very much looking forward to your book and so pleased you’re writing it. Promise to let all your MN supporters know when we can buy a copy

Thank you so much for your very kind and thoughtful comments - I'm shitting it now that I've put it out there that I actually have to write the bloody thing now!! Well, I hope so. I have to write a detailed proposal and 2-3 sample chapters to pitch to publishers (for non fiction they don't require a full manuscript) - my agent thinks if it's pitched right that there will be a market for a book like this, but obvs it comes down to whether the writing is good enough and if we can persuade a publisher that there's a market for a book like this

I'm really hoping that I can craft a decent proposal and do a good enough job that a publisher will pick it up, and there will ultimately actually be a book on sale for you to buy a copy at some point!

(Very selfishly, the last section of the questionnaire has a couple of questions about this project, if you think you'd read a book like this - so any responses would be very much appreciated - so I can try and demonstrate to publishers that there is indeed an audience for this book!)

Hi Banana,

I have contributed to your questionnaire but did not get to the end (had IT failure!) Would you still have received my responses after each section or will I need to refill? I have a lot to say so am keen to contribute!

Secondly wanted to ask do you feel people without children are viewed as being lesser in our society? When going on my journey I definitely felt a lesser human being ( by which I mean less worthy, less meaning to my existence) and I didn't know whether this was an innate feeling or just societal expectations I was internalizing.

@Mrsfw thank you so so much for completing the questionnaire - I was really worried about how people would find the questions, as it's deeply personal and deeply emotional. I'm really glad that you found it cathartic - really appreciate your sharing your story

@ZispinAndChaga I cried when I read your post!! I'm really moved - so happy to hear that it sparked a positive conversation with your DH, that's just brilliant. Would be really wonderful to have your DH share his POV - huge thank you to the both of you

@Foreverfish response to the second half of your excellent question to follow! At the end of each section the save and continue button saves your responses for that section - so I may well have received your responses (but cos it's anonymous I won't know whose yours are!). If you want to pick up where you left off you can just skip sections you've already done and pick up when you get to wherever you dropped off. I really hope the IT failure wasn't a problem with the questionnaire - I'll get on the case if so!!

Thank you SO much for your input - please do get anything and everything off your chest - absolutely delighted for all and any contribution xx

@NC4T I'm so glad you were ultimately successful - congratulations on the birth of your DS2. It really is a special kind of hell. I can quite honestly say experiencing infertility and pregnancy loss has been the worst experience of my life - and I've nursed my beloved mother at the end of her life, held her hand as she took her last breath and lived with chronic pain from a spinal injury for over 20 years. I had a cancer scare a few months before we reached the end of the road too, which was fun. Ironically (ha bloody ha) I was referred to the gynae oncology clinic on an urgent 2ww (ha bloody ha again, my life is a series of 2ww) referral, because my smear had come up with dodgy non cervical cells. I'd quipped to DH that when I got the invite through for the smear a week after my surgery for my 2nd mc, that sod's law it would come back abnormal cos that's all we needed. It wasn't the usual cervical abnormal, oh no. It was the 'only 40 women a year in London get this particular result and 70% of these are cancerous'. Woop! I did think at this point that if it was endometrial cancer than at least we'd have an answer for why my womb didn't fucking work, and at least we had the embryos, so the prospect of a hysterectomy didn't seem that bad, as long as I could set light to my uterus in a ritual burning and give it a viking funeral down the river.

(Gallows humour is very important to us!)

Needless to say it turned out to be a wonky result from turning myself into a human chemistry set, and I didn't have any malignancy (and we weren't any closer to a reason for why my womb didn't work)

I think the most toxic thing about infertility isn't just the all consuming ache as to whether or not you will ever have a baby. But it's how it infects every part of your life, your identity - everything.

I'm so sorry you have had cause to understand the pain of infertility, but I'm delighted your story ended with a baby.