The Daily Mail Guide to Infertility

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Why your lifestyle almost certainly isn’t to blame for your infertility (despite what the Daily Mail headlines say)


[ Originally posted on Medium ]

If you’re struggling to have a baby, it can feel overwhelming to know what you should and shouldn’t do, to give yourself the best chance of success.

Well fear not! Having conducted a full meta-analysis of one leading UK tabloid newspaper (Jan 17-Aug 18), here is a summary of its bulletproof guidance and absolutely rock solid health advice, guaranteed to give you the miracle baby of your dreams.*

*disclaimer: may not be bulletproof guidance, rock solid health advice, or guaranteed to give you the miracle baby of your dreams.





Clear and simple, right? When you’re not throwing out your tupperware; getting rid of all your cleaning products; replacing all your toiletries; going cold turkey on your mobile phone; buying your partner new boxers; strutting around with a cushion up your top pretending you’re pregnant; rethinking your career goals to make sure they’re not too ‘masculine’; trying to get just the right amount of exercise (not too little, not too much); making sure you’re getting just the right amount of sleep (not too little, not too much); cutting back on alcohol (whilst still drinking 5 glasses of red wine a month); guzzling fertility supplements; charging up all your various fertility devices (one on your wrist, one up your vagina); moving out of the city to the countryside (but not taking any anti-histamines when your allergies play up); avoiding sofas, car seats, laptops, water bottles and receipts; trying to precisely measure out the exact recommended quantity of walnuts; planning your trip to China to sit on cock-shaped rocks; working out your top 5 friends; and running back from yoga and acupuncture just in time to have sex at precisely the right time of day, in precisely the right month, in precisely the right position, and for precisely the right duration — just remember that the Daily Mail has also told you that stress can double the risk of infertility.

DO ALL THESE THINGS BUT UNDER NO CIRCUMSTANCES IN DOING THEM MUST YOU GET STRESSED AND UNDO ALL YOUR HARD WORK.

Ignore these at your peril — because why wouldn’t you want to be rewarded for your hard work with surprise twins or triplets, like the couples featured in these stories, with their miracle babies, all thanks to these miracle cures?

And does any of this really matter anyway - because if you’re infertile you’ll probably die early regardless?


An alternative to the Daily Mail infertility regime

Maybe it’s not your fault if you’re struggling to get, or stay, pregnant.

Maybe your infertility issues aren’t caused by anything you did or didn’t do.

Maybe you didn’t do anything to deserve this.

Maybe it’s just shitty, shitty luck of the draw.

Maybe trying to be generally healthy, taking a prenatal vitamin and following any specific guidance from your Dr is enough for you to have ‘done your bit’.

Maybe it’s more important to look after your body and mind for your own general wellbeing and sanity, than in pursuit of a miracle infertility cure.

Maybe you don’t need to beat yourself up for ‘not trying hard enough’.

Maybe you’re trying your best, and it’s now down to science and luck.

Maybe the Daily Mail doesn’t have all the answers.

“You never know true love until you have a child”

[ Originally posted on Medium ]

“You never know true love until you have a child”

This quote is definitely a podium winner when it comes to ‘hurtful comments people say when you’re childless not by choice’

Let’s dissect this sentence, shall we?

1. ‘You never know true love until you have a child’

Which ‘you’ is that? You, the person saying this out loud, may have felt this about your own experience — that you were wandering in a world bereft of genuine love until YOU had a child. In which case, dear person making this comment, it would be more accurate to say, ‘I myself didn’t know true love until had a child’. A statement which is all sorts of problematic in so many other ways, but let’s get the pedantry out of the way first.

‘You’ doesn’t mean ‘me’. It means ‘the person or people that the speaker is addressing’, or may also be used ‘to refer to any person in general’

If you’re addressing me personally, then I have two words for you. One begins with ‘F’, and the other is ‘off’.

Firstly, that’s a massive assumption: you know absolutely nothing about my life. You know nothing about the love I share with my beloved husband & soulmate; the loving relationships I have with friends and family; the love I have for the things in my life that fulfil and enrich me; and the love I have for the amazing women I have never met — but who have been my lifeline throughout my experience of infertility, pregnancy loss, and involuntary childlessness.

And secondly, even if you did know my innermost thoughts (which you don’t), you cannot speak for anyone else but yourself. Your narrow-minded feelings are your own, you don’t and can’t speak for me and mine. And certainly not for ‘any person in general’ who doesn’t have a child.

2. You never know true love until you have a child’

Another semi-linguistic point. ‘Until’ is another insensitive and hurtful part of that sentence. ‘Until you have a child’ suggests that having a child is an inevitability, that it’s something ‘you just do’, that it’s a universal experience. Newsflash: it isn’t. Many, many people will never have a child. Many of those people are childless not by choice. We desperately wanted to have a child. We wanted it to be part of our own lived experience. But life didn’t turn out that way. There simply is no ‘until’ for us.

3. You never know true love until you have a child’

Why and how do you get to define true love? How can you compare different experiences of love? What does ’true love’ even mean? That every other kind of love is invalid compared to love for your child?

It also makes no sense from a basic logic POV: if the only true love is a parent’s love for their child, then by that definition all love is unrequited! A parent’s true love for their child isn’t truly reciprocated, because their child can only know true love until they have a child. And so on, and so on. Which is a pretty f***ed up way of looking at the world!

In my world, my love for my spouse, family, friends and community is enormous, real and true. I don’t know what my experience of loving a child would be like, but I would hope that it would be a joy that didn’t automatically negate every other experience of love in my life.

There is no higher or lesser form of love, every form of love is unique — regardless of whether you have a child or not.

Love is love.

This was originally published on the World Childless Week website, about Comments that Hurt, as part of #worldchildlessweek

Nature 1: 0 Science

image by  chuttersnap  on  Unsplash

image by chuttersnap on Unsplash

[ Originally posted on Medium ]

‘Well, Ms Lindemann, you are, without doubt, the weirdest case I have ever seen’

So said the eminent Professor and world-leading researcher in infertility and miscarriage. I was one of the thousands of women who came to his clinic from all over the country — even the world. He’d been a specialist in reproductive medicine for well over 20 years, but I was the strangest case he’d ever seen.

‘I’ve never seen what happens to your womb in humans before, only in mice.’

I’m not just infertile, I’m really really infertile.

1 in 6 couples experience infertility, but I’m the only woman in the world with a womb like a mouse, apparently.

My husband is apoplectic with rage when I’m introduced to another Dr as being ‘like a mouse’, as he (rightly) says that it’s dehumanising. I’m so used to feeling like a lab rat, I don’t even notice.

The eminent Professor says that statistically, most couples do get there eventually, with persistence (although at what physical, emotional and financial cost?)

And that from a clinical point of view, he rarely recommends that a couple stop trying for a baby because they’re a hopeless cause — that the decision to continue is one for them and them alone.

‘But, Ms Lindemann, you are a case entirely all on your own. There is absolutely no question that there is no point in you continuing treatment — your womb is simply unable to sustain a pregnancy’.

Our route to reaching the end of the road was ridiculously short and sharp. From starting trying to being told I’ll never have a baby, in just 2 years. We were doing IVF within 3 months of starting to try: anyone who says the baby-making phase is fun has clearly never gone through fertility treatment (which a friend of mine astutely describes as ‘a very expensive form of self-harm’).

Highlights of just one 12-month period include 4 IVF cycles, 3 cancelled cycles, 2 pregnancies, 2 losses and 3 surgeries (no partridge in a pear tree). Then begins the slow descent to the end, as it’s clear that whatever procedures, therapies or medications we try, things are getting worse, not better.

If anyone chips in with a well-intentioned — but desperately unhelpful — ‘have you tried…’ comment (yes, it’s great that your infertile friend was told she’ll never have children, then snorted some oregano and licked a tortoise and now they have miracle quadruplets, but that has no relevance to my situation), I bite my tongue, as I will win the ‘have you tried’ game.

Things I have tried to improve my womb include:

  • HRT (oral, vaginal & patches)

  • low doses of hormone injections

  • high doses of hormone injections

  • oral Viagra

  • vaginal Viagra pessaries at £1000 for 7 days (specially commissioned from a compounding pharmacy in Cardiff)

  • uterine washes with a drug used for bone marrow harvesting

  • blood pressure tablets

  • blood thinning tablets and injections

  • tablets used to treat breast cancer

  • many, many womb biopsies

  • surgeries

  • going on contraception (yes, a copper IUD was part of my fertility treatment)

In addition to thousands and thousands of pounds on:

  • fertility acupuncture

  • a bazillion supplements

  • red raspberry leaf tea

  • pomegranate juice

  • red meat & other ‘womb lining friendly food

  • Mayan abdominal massage & nightly castor oil packs

  • fertility reflexology

  • lots of fertility meditation & hypnotherapy.

Spoiler alert: none of this worked.

The narrative that if you try hard enough, keep going, don’t give up, stay strong and you’ll get there, that it’ll all be worth it when you have your baby in your arms, isn’t just unhelpful — it’s offensive.

(See also the ‘You can beat cancer if you fight hard enough’ narrative.)

As though if we weren’t successful, it’s because we didn’t try hard enough.

No. Just no.

I’m childless not by choice because of biology.

Nature 1, Science 0.

I might be the only woman in the world with a uterus that’s so dysfunctional it’s never been seen in humans before.

But I’m not alone in being infertile. The WHO defines infertility as a ‘disease of the reproductive system’. I am the 1 in 6.

I’m childless not by choice because I suffer from this disease. Not because I didn’t try hard enough.


This was originally published on the World Childless Week website, for the theme ‘Facts & Figure: Our Stories’, as part of #worldchildlessweek

Infertility and the tyranny of positivity

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Why you don’t have to join the cult of positive thinking when you’re struggling to have a baby

[ Originally posted on Medium ]

Infertility is shit.

It’s really, really shit.

(Spoiler alert: this isn’t going to be crammed with motivational affirmations about infertility. There also will be swearing. Lots. Though you’ve probably already guessed that bit.)

Infertility can be traumatic, heartbreaking, brutal, and utterly unrelenting.

An oft-cited study exploring the psychological impact of infertility found that depression levels in infertility patients were comparable with patients who had been diagnosed with cancer.

Another study found that 4 in 10 women experienced symptoms of PTSD following a miscarriage.

(Anyone who says ‘ The baby making phase was fun!’ clearly never experienced the joys of infertility.)

FUN TIMES!

The cult of positive thinking

Yet whenever people talk about infertility, any meaningful acknowledgement of the deep emotional distress it causes seems utterly conspicuous by its absence.

The only acceptable narrative is one of positivity. Entertaining any negative thoughts is a cardinal sin. Under no circumstances should you allow yourself to get stressed, sad or anxious. You must remain hopeful and optimistic at all times.

Why telling an infertile person that relaxing will help them get pregnant is a monumentally unhelpful thing to say

Mention that you’re suffering from infertility, and you can pretty much guarantee that someone will mention that fabled medical cure of RELAXING.

(If you’re playing infertility bingo, ‘just relax’ is up there as a high scorer, but has just been edged out of the top spot by everyone’s favourite ‘why don’t you just adopt?’)

If you’ve ever experienced infertility, comments like these will be all too familiar:

ThingsPeopleSayToInfertilePeople:

Just relax and it’ll happen.

What we hear:

I’m treating your bona fide medical problem with contempt — and yes I know I wouldn’t dare tell a diabetic/cancer sufferer/person with one arm to just relax, but for some reason I think that will fix YOUR medical problem quite easily.

ThingsPeopleSayToInfertilePeople:

My cousin’s secretary’s sister’s boyfriend’s neighbour and his wife had been trying for 17 years, and had 300 rounds of IVF, and she had blocked tubes, and he had one bollock and a low sperm count, and they were told she’d never get pregnant — so they gave up trying, and went on the adoption list, and went on holiday, and relaxed, and got drunk, and OMG she got pregnant naturally with quadruplets. Never give up!

What we hear:

I have no idea what I’m talking about medically, but I’ll advise you anyway, and spout spurious examples of unrelated cases just because it’s the only story I know. I also think your decision not to continue with ridiculous heart-wrenching and expensive treatments means you obviously don’t want it/aren’t trying hard enough. Shame on you.

ThingsPeopleSayToInfertilePeople:

Maybe you should take a break — I bet if you just relax, it’s bound to happen. It happened to me. We’d been trying to conceive for 6 months with no luck — then we went on holiday and forgot all about it — and BAM, I fell pregnant. It’ll happen for you when the time is right, I know it will.

What we hear:

My 6 months of not-getting-pregnant-from-some-sex is exactly the same as your years of infertility and multiple rounds of physically, emotionally and financially harrowing fertility treatment. I think that you’re trying too hard, and that all this stress is what’s preventing you from getting pregnant. Surely if it’s not happened by now, even with all this intervention, you must be doing something wrong.

Public Service Announcement: Infertility is classified by the WHO as a ‘disease of the reproductive organs’.

Causes for which include issues like PCOS, endometriosis or fibroids, polyps, blocked fallopian tubes, congenital uterine malformations, pelvic adhesions, high levels of uterine natural killer cells, various autoimmune issues, sperm defects (incl. count, motility, morphology or DNA fragmentation), and chromosomal problems such as balanced translocations (amongst numerous others).

Which, apparently, can all be addressed by the incredible power of positive thinking.

(Curiously, you don’t tend to hear relaxation suggested as a miracle cure for diseases like cystic fibrosis, motor neurone disease, or cancer.)

In my own case, given we’ve tried 4 IVF cycles (& 7 cancelled cycles); pre-implantation genetic screening; a wealth of weird, wonderful, painful (and expensive) investigations; thousands and thousands of £££ on medications via every conceivable route of administration (pills, patches, pessaries, suppositories, subcutaneous injections, intramuscular injections, intravenous drips and intrauterine infusions, to be precise); 2 hysteroscopies, plus the opinions of the best fertility specialists on both sides of the Atlantic (and still no baby)…

…at a guess, I suspect your expert fertility treatment plan of ‘going on holiday & getting pissed’ (whilst no doubt enjoyable) PROBABLY ISN’T GOING TO FIX MY BROKEN WOMB LINING, AND OVERCOME THE FACT I WILL NEVER BE ABLE TO CARRY A CHILD.

(Also, I’ve already tried holidays and getting rat-arsed drunk. Oddly enough, I’m still barren.)

Why it’s even more insidious when clinicians tell you to relax

It’s one thing when ‘well-intentioned-but-desperately-unhelpful’ friends — who don’t know any better — tell you that the reason you’re not getting pregnant is because you’re stressed. But it’s downright cruel when fertility clinics promote the notion that ‘if you’re not thinking positively then you’re decreasing your chances of success’ (the implication being that if treatment fails, you’ve only got yourself to blame).

One leading London fertility clinic states on their website:

There’s no question about it: Your emotional health may on some level affect your ability to conceive. Our thoughts and the way we think determine our emotional and physical state. I feel that negativity and negative thoughts can, at some level, act as a block when trying for a baby.

Another UK clinic advises that:

Positive thinking can be a very powerful tool when it comes to improving your chances of the IVF process resulting in conception.

Stress and anger however, can have a counterproductive effect on IVF treatment, so it’s in your best interests to relieve yourself of these emotions.

Stress has a direct relationship with a woman’s menstrual cycle and the fertility process and may affect your chances of a successful IVF treatment.

A clinic in the Middle East (on a page ambitiously titled “The Power Of Positivity: Believe You Can And You Will!”) counsels against even talking about your fears & doubts:

Surround yourself with people who can listen to you and your journey that have more of a positive approach and avoid discussing the subject with those who make you feel negative.

So, if you’re not already feeling utterly distraught about the entire, soul-destroying process and the relentless failure, now you can beat yourself up about the fact that even the Drs reckon it might be your fault that you’re not getting pregnant — because you’re not being sufficiently cheery and optimistic.

Fertility clinics are a part of a multi-million pound industry, profiting from the delivery of medical treatments to treat physical conditions — treatments which are anything but relaxing. If clinics genuinely believed that stress had a meaningful effect on success rates, they’d be flogging relaxation therapies as a core part of treatment protocols. They’d be prioritising fertility counselling as a critical stage of any IVF cycle — instead of a token afterthought, paying lip service to the HFEA code of practice requiring all UK clinics to provide patients with (optional) access to counselling.

Much better instead to push the positivity agenda (and the blame) back onto the patient. A buy-one-get-one-free special bonus offer on guilt — giving you the chance to feel like a double failure! You thought a problem with your body was the reason you couldn’t have a baby? Well now it turns out the problem’s also with your mind! When you’re picking yourself up off the floor after another failed cycle, desperately looking for answers — perhaps instead of questioning whether the clinic could have done anything differently, maybe you’re to blame? Maybe you sabotaged your chances of success, because you were so fearful and anxious of yet more failure?

Why you don’t need to stress about being stressed

The BMJ (one of the world’s oldest and most well respected medical journals) conducted a broad meta-analysis of the extant research into the thorny question of whether poor psychological wellbeing impacts on fertility outcomes. The paper’s authors concluded that the evidence demonstrated that this theory is — to use the appropriate technical lingo — UTTER BOLLOCKS.

Yep. The snappily-named “Emotional distress in infertile women and failure of assisted reproductive technologies: meta-analysis of prospective psychosocial studies” gathered data from 14 separate studies, which followed over 3,500 women undergoing fertility treatment. It concluded that:

The findings of this meta-analysis should reassure women and doctors that emotional distress caused by fertility problems or other life events co-occurring with treatment will not compromise the chance of becoming pregnant.

See that? Emotional distress will not compromise the chance of becoming pregnant.

Suck on that, positivity vultures!

No doubt the Daily Mail will continue to gleefully run stories like ‘Stress can double the risk of infertility for women’ (unsurprisingly opting for a sensational headline that contradicts the study’s actual findings— helpfully summarised by the NHS here: Study fails to prove effects of stress on fertility)

Perhaps in the future more conclusive evidence will determine that there is in fact a clear causal link between anxiety and infertility outcomes. Maybe we doall need to jump on the positivity bandwagon to have any chance of having a baby.

But for now, Dr Jacky Boivin — who authored the BMJ paper above — advises:

If people are thinking of using some kind of intervention [to treat stress] — and you can go on the Internet and find a million things claiming they’ll get you pregnant — they should be motivated to use them to improve their quality of life rather than to increase their pregnancy rates.

Why it’s OK to reject the cult of positivity

Stress may not cause infertility, but infertility definitely causes stress.

And for many of us, rather than alleviating this anxiety, the tyranny of positivity can make it much, much worse.

I did a shedload of mind-body therapies, all recommended by the top fertility gurus as vital stress-busting techniques to improve one’s chances of success.

These included: fertility acupuncture, positive affirmations, hypnofertility, fertility reflexology, visualisation and guided imagery, specialist meditation for infertility, Mayan abdominal massage, mindfulness colouring books and gratitude lists (amongst others).

  • Did I find them enjoyable and relaxing? No.

  • Did I get frustrated that I was supposed to be feeling relaxed, but didn’t? Yes.

  • Did I feel anxious that I wasn’t ‘doing them right’, because apparently they worked for everyone else? Yes.

  • Did I feel anxious about feeling anxious, because that negated the whole point of doing all this in the first place? Yes.

  • Did I resent them as a colossal waste of money? Yes.

  • Did I ever at any point honestly believe that they would have any impact whatsoever on the outcome of my treatment? No.

I’m a massive cynic. I consider myself a (broadly) rational person. I don’t give much credence to ‘alternative’ medicine. I’m the sort of person who rails against homeopathy, and urges people to read books like Bad Science to understand the importance of evidence-based medicine.

But despite all of this, against my better nature, I did ALL THIS FERTILITY WOO ANYWAY. Because I felt guilty that if I didn’t try hard enough to become a super-chilled, mega-Zen, über-positive, gold star ‘ray of sunshine’ infertile, that it would be my fault if (when) the treatment failed.

The cult of positivity became a stick with which to beat myself.

A positive outlook can be really, really valuable for your overall mental wellbeing. But it’s not a miracle panacea for getting (& staying) pregnant.

Personally, I wish I’d focused more on radical self-care, and less on worshipping at the altar of positivity.

What actually helped me most of all was finding my tribe. Women who were going through the same experience, who understood exactly how I felt. Who shared my exasperation with the whole Pollyanna masquerade. Who acknowledged how unbelievably shit it was, and didn’t offer sentimental platitudes. Who listened without judgement .Who offered empathy, sardonic laughter, sisterhood and support. Who made me feel less alone.

There is no right or wrong way to ‘do’ infertility. Just do whatever you need to do to survive.


If you liked this, then you might also like…

This fantastic episode of the Fertility Podcast about #relaxgate — the backlash against British TV Dr Hilary Jones for his spectacularly uninformed and insensitive comments to a caller who was asking for advice after 5 unsuccessful rounds of IVF: suggesting that (yes, you’ve guessed it) she should ‘just relax’ — and that if she stops thinking about it, a miracle surprise pregnancy might happen naturally. Which, as you can imagine, didn’t go down too well amongst the infertility community.

Well worth a listen:

The Fertility Podcast: Episode 131 — Just relax. What not to say to someone on their TTC journey

Fertility Fest 2018

Last month I volunteered at Fertility Fest - the world’s first art festival dedicated to fertility, infertility, modern families and the science of making babies.   The London 2018 festival took place at The Bush Theatre London from 8-13 May with 40 events over 6 days with 200 artists and fertility experts - this trailer gives just a snippet of the wonderfully diverse programme:

 

I'd attended the inaugural Fertility Fest in 2016 - quite memorably, just 48h after egg collection for our third IVF cycle (so not only was I so bloated that I resembled a spacehopper, but I also spent the morning sessions semi-watching my phone like a bomb detonator, nervously waiting for THE CALL from the embryology lab with the Day 2 update).

It was a truly amazing day. I laughed, I cried - but most of all, I felt like I was with my tribe. With people who just got it

I knew that this event was something very special, very important, and very, very needed.

So I was delighted when the wonderful co-founder & organiser, Jessica Hepburn contacted me to ask if I was interested in helping out at this year's Fertility Fest.

 

Hope and hopelessness

In the 2 years since the previous event, I had very sadly reached the end of the road with my own infertility journey - with Drs on both sides of the Atlantic having told us that we had exhausted all our options, and that we had to accept that my womb was not capable of sustaining a pregnancy.

Last time I'd been in a position of desperation and hope;  hoping with every fibre of my being that one of those embryos would go the distance, and that we would have a much-longed for baby.  This time I was in a state of resignation and hopelessness; coming to terms with saying out loud 'We can't have children'.  

Last time, I was only a third-division barren - 3 cycles and 1 miscarriage wasn't that much, after all. Definitely amateur status. This time I was a top-flight pro, Premier League, elite squad professional barren. Unequivocally über barren.

And I felt very, very alone.

 

Solidarity & community

Taking part in Fertility Fest 2018 wasn't just interesting, informative, or inspiring. It was the opportunity to be amongst my people. Where I felt like I was part of something much bigger than me. Where I felt less alone.

Because I wasn't alone.

There were so, so many women (and men) who felt the same. We all have different stories and different experiences, but we felt an incredibly sense of solidarity with one another.

These are just a handful of the comments left by some of those who attended the event:

 
fertilityfest2.jpg
 
It is hard to put in to words how much it means to me to have been involved. In the middle of a difficult year, it provided just the support, encouragement and love that we needed. It might seem a bit hyperbolic to say it’s changed us, but in many ways I think it did.
— Fertility Fest attender
I no longer feel so alone in my own journey. It was amazing to be with people and feel like one of the crowd rather than on the outside of everything.
— Fertility Fest Attender
I met really interesting people. I learnt new things. I felt that ‘fertility’ stopped being a rather dark and difficult thing and that it became something which could be discussed in new and more positive ways.
— Fertility Fest Attender
The feeling of community was palpable. I felt able to speak to anyone as I knew that there would be some form of shared experience. I made several connections and came away with some new friends.
— Fertility Fest Attender
 

Über Barrens Club

This is what Über Barrens Club means to me - it's not a specific forum or group, it's the wider community of people who get it. People who can empathise with what it's really like to be excluded from the parents' club, peering in from the outside, desperately wanting to join in. People who you can be open with - who acknowledge that it's really really shit, really really gruelling, and really really unfair.

You don't want anyone else to have to become a member of Über Barrens Club. But it means the world when you can speak to other members of the club no one wants to join.

That's what I take away from my experience of Fertility Fest.

And that's why I'm trying to write this book.

And if you're also a member of Über Barrens Club, I'd love it if you'd consider sharing your story too.