#FertilityFellas: a brief history of male infertility

This week is UK Fertility Week — and today’s theme is #FertilityFellas.

Fertility is not solely a female issue — men are half the fertility equation too, but are often ignored. To understand a bit more about how we got to this point, I thought it would be interesting to take a trip down memory lane, and have a look at some highlights in the history of male factor infertility.

Let’s jump back a few hundred years…

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Don’t be silly, of course men don’t have fertility issues — it’s the woman who’s barren

Fertility and virility have historically been central to masculinity —so to be impotent or infertile was to be a failure as a man. So it’s not surprising that in years gone by, any inability to conceive was blamed on the woman — as long as the man wasn’t impotent, he was assumed to be fertile.

Daniel Sennert summed this up in his 1664 page-turner Practical Physick; The Fourth Book:

Hence we may gather, that Barrenness is oftner from a fault in the women then the men: for in men there is nothing required but fruitful Seed spent into a fruitful womb.

Jolly good — so as long as he got his rocks off, job done. If babies didn’t immediately spring forth it was definitely his barren wife’s fault.

Unsurprisingly, blokes were pretty happy with this theory, so it becomes a bit of a recurrent theme…

No doubt for James McMath in his 1694 banger The Expert Mid-wife: A Treatise of the Diseases of Women with Child:

‘the vile Imputation of Barrenness, rests almost, solely upon them [i.e. women]’

Or William Salmon in his 1686 blockbuster Systema Medicinale, A Compleat System of Physick, Theoretical and Practical :

‘Here we shall only examine Barrenness, so far as it concerns a Woman alone.’

One of my favourite examples of the ‘nope, definitely not the man, it’s absolutely, definitely the woman who’s got the problem’ assumption is US President George Washington. He and his wife Martha were happily married but “mystified why, year after year, he and Martha could produce no Washington heir”. Obviously as the leader of a great nation, there couldn’t possibly be any question of his virility, so the issue evidently had to lie with Martha.

Except that Martha was a widow, and had given birth to 4 children with her late husband before she married George.

So, er, yeah, the woman with 4 kids is definitely the infertile one…

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Alright, maybe the male partner might be worth checking out, just to be sure

Whilst the barren women assumption dominated, the notion that the problem might lie with the male partner wasn’t totally inconceivable (no pun intended).

In his study of barrenness in The Hidden Treasures of the Art of Physick (1659) surgeon John Tanner stated that there might be merit in considering male infertility

Before you try these uncertain conclusions upon the Woman, examine the man, and see if the fault be not in him.

The 1668 edition of Lazarus Riverius’s Practice of Physick went further by acknowledging that failure to consider the possibility of male factor could inflict unnecessary treatments on the female partner:

‘diligently consider and inquire, whether Conception and Generation be not hindered by fault of the Man, or any deficiency in him. For in such a Case, It were vainly done to torment the Woman with a multitude of Medicines.

The contribution of sperm quantity and quality to successful conception was recognised even in 1662:

‘the mans Seed, when it is not sufficient in quantity, or fit for Generation; and though a Woman receives it, either there is no Procreation, or its in vain’

And varicoceles had been identified as a possible root cause of male factor infertility as early as 1687

They who have their Testicles varicous are barren, because the Spirits of Generation pass to the Varices, and so leave the Seed unfruitful, being deprived of Spirits’

It’s clear that there was in fact a relatively sophisticated level of understanding of male factor infertility, even in the 17th century — but that there was little appetite to attribute any blame to the male.

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OK, so how can we test for male factor?

If a man was willing to have his virility challenged, there were a couple of ways of investigating male infertility:

Male vs female fertility blame game

image by Francesco Gallarotti on Unsplash

In 1545 one handy midwifery guide advised that both partners should pee into a pot that had been planted with barley, and whichever seed sprouted first demonstrated the fertility of the person who had watered it.

Or for a more rapid-turnaround test result: both parties would pee on a lettuce leaf, and the person whose urine evaporated from the leaf first was thought to be infertile.

Urine + horticulture — they both sound pretty bulletproof fertility tests, no?

Solo male testing (strap in for this one)

image by Matt Hoffman on Unsplash

But wait, there’s even a fertility test for the blokes in their own right.

Instead of knocking one out in a clinic masturbatorium, yep, you’ve guessed it — it’s pee-in-a-pot time again.

But be prepared, it’s a doozy.

In his 1605 smash hit, The General Practise of Physicke, Christopher Wirtzung suggested this approach to determining a man’s fertility:

‘let him pisse in a pot, and let the urine stand awhile, if wormes grow therein, then is that urine barren’

WTF?!!

Leave your warm piss in a cup and see if any worms start growing? If worms grow in your piss then I think you’ve got more than subfertility going on to worry about!

And let’s face it, the likelihood of worms magically emerging seems somewhat slim (at least, you’d hope so). Therefore the man was guaranteed to pass with flying colours regardless.

Bonus male fertility top tip

image by Sam Truong Dan on Unsplash

Whilst reading up on the history of male infertility, I ended up down some pretty freaky rabbit holes, discovering certain stuff I can never un-see.

And now I’m going to share this delightful fertility sex tip with you too.

Jane Jackson’s recipe book included a fertility enhancing remedy that had to be applied to the male genitalia:

‘Take the braine of a crane and medle it with ganders grease and fox greaseand keepe it in a vessell of silver or of gould and at what time thou wold have knowledge annoynt therewith thy yard and shee shall conceave’.

Right, so kill a crane, mix up its brain with some goose and fox grease, smush it together and smear it on your cock, BOOM. Up the duff.

Suddenly those fertility lubes like Pre-Seed are looking remarkably appealing in comparison…

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We’ve invented semen analysis! But nah, let’s not bother with it, it’s probably a waste of time

image by Ousa Chea on Unsplash

So in the 1860s, American gynaecologist James Marion Sims is investigating ‘sterile marriages’ and decides to have a quick look at a semen sample under the microscope. And, wait for it…..he can now see ACTUAL sperm with his own eyes! Voila, the semen analysis is born. Examination of sperm count, motility and morphology is now possible. No more peeing on lettuce leaves.

Zoom forward a few years: in 1945 the Family Planning Association (FPA) opens a dedicated seminological centre — Britain’s first purpose-built laboratory for investigating semen samples.

It was established in part specifically to help women, by sparing them from ‘unnecessary operative procedures’ — when it was the husband who was ‘partly or even wholly responsible’ for the couple’s infertility.

Awesome! Finally infertility is treated as a couple’s issue!

Er, not quite.

One medical journal reports the case of a couple who were struggling to conceive, and over the course of 2 years, the woman underwent:

• 2 D&C operations

• a tubal insufflation

• a salpingogram

• an endometrial biopsy

• a host of tablets, injections and vaginal douches

Only after all this invasive treatment was unsuccessful did someone suggest that perhaps her husband’s fertility should be tested.

One simple semen analysis later & the verdict is in.

Not a single sperm was found in the sample. Not one.

Neither in any of the subsequent repeat tests.

Every single procedure the woman endured was thus totally pointless — all because male factor simply wasn’t a priority.

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Let’s deliberately avoid diagnosing a male factor issue so we don’t hurt the man’s feelings

image by Sydney Sims on Unsplash

Although in theory the new concept of ‘infertile marriage’ gave equal weight to women and men, in practice few English doctors paid the same amount of attention to both partners.

Some men felt so threatened by the prospect of having to take a semen test, that they attempted suicide. Therefore one doctor argued that the risks of upsetting a sensitive man by asking him to undergo a semen test far outweighed those of unwarranted surgery on his wife.

Sometimes it was even the wife who objected to the test ‘either because she is afraid of the effect the knowledge of his infertility may have on their relationship, or because she believes that male infertility cannot be treated successfully and she prefers to live in hope rather than know the truth.’

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How much progress have we actually made?

Male infertility is a really, really important issue — that simply doesn’t get enough recognition

It’s now the most common reason for couples in the UK to have IVF, according to the latest HFEA data.

And we really, really should be paying more attention.

Last year, an apocalyptic study by the Hebrew University of Jerusalem found that sperm counts in the West have more than halved over the past four decades, and are continuing to decline — but we don’t really understand why, or what to do about it.

Despite so many cutting edge advances in assisted reproductive technology, the way we approach male infertility isn’t really that dissimilar to 150 years ago.

Women are routinely undergoing IVF — even if there’s nothing wrong with their own fertility — because their infertile partners are being ignored by the medical profession.

Leading fertility expert Prof Sheena Lewis — chairwoman of the British Andrology Society — says the lack of focus on male infertility within the health system is an “urgent” problem:

Men are not being looked after properly, not diagnosed, and not cared for.

The woman actually acts as the therapy for the man’s problem. We are giving an invasive procedure to a person who doesn’t need it, in order to treat another person. That doesn’t happen in any other branch of medicine.

A couple with a male factor infertility diagnosis will be referred to a fertility clinic, where they will be treated by a gynaecologist. It’s the male partner who has the medical issue — but yet they’re sent to a specialist in women’s reproductive health.

Dr Jonathan Ramsay, a consultant urologist specialising in male fertility sees many couples who’ve undergone multiple rounds of failed IVF, where the underlying pathology was never identified and treated — rendering the treatment utterly futile.

Which sounds rather like the 1945 case mentioned above, where no one had bothered to look at the man’s sperm until 2 years of harrowing treatment down the line.

Dr Ramsay says:

What gynaecologists don’t do is look at the bloke and say, let’s do some old fashioned doctoring with you. Let’s do a few more tests. A physical examination could reveal a varicocele, for example: a varicose vein in the testicle that can overheat the sperm, yet be eliminated by a quick operation under local anaesthetic.

Or it could be that he’s obese and drinking too much. If that guy loses weight, stops drinking and just does sensible exercise, he may well get over the threshold where she gets pregnant. We need to treat the man and the sperm, ignoring half of the picture is just not sensible.

We saw above that varicoceles had been identified as a cause of male factor infertility in a medical text from 1687 — and yet in 2018 a couple may be referred for ICSI without anyone even bothering to examine the man to see if this might be a treatable issue?

How much unnecessary time, money and heartache might be saved if men were actually acknowledged as more than the sperm donor?

They deserve better. Their partners deserve better. We might have moved on from peeing on lettuce leaves in 2018, but in many ways we haven’t really moved on at all.

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How you can help & have your say

Thanks so much for reading — all and any feedback is very gratefully received.

I’m currently trying to write a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s and men’s stories about what it’s really like to struggle with infertility and pregnancy loss. It’s a club that no-one wants to join: but knowing that you’re not alone can provide solace and support in the darkest times.

My goal is to represent as many different perspectives as possible — including the male perspective. If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously. There are questionnaires for both the female and male perspective — and I’d love to hear more from the guys!

My interview with The Fertility Podcast

I was deeply honoured to have been invited onto The Fertility Podcast to record an interview about my infertility journey, the importance of finding your tribe for support (from other members of the club no one wants to join), and what I’m hoping to achieve with this book project (and how you can contribute by sharing your story)

The podcast went live today - fittingly on the first day of National Fertility Week , supporting this year’s theme #YouAreNotAlone

Thank you so much to Natalie at The Fertility Podcast for having me on: I really enjoyed our chat, and can’t wait to come back in a few months with updates about all the amazing stories you wonderful people are sharing.

You can listen to the podcast here, or find it on Apple Podcasts, Google Podcasts, Stitcher or Acast

And there are full details of the show notes here: The Fertility Podcast EP 158: The Notebook of Doom

Hope you enjoy! If you want to get in touch about anything in the podcast, just drop me a line, I’d love to hear from you.

Guardian: Do we need a new language for miscarriage?

[ Originally posted on Medium ]

I wrote an article for The Guardian about the language of miscarriage for Baby Loss Awareness Week 2018. I know. The bloody Guardian!! I sent off a pitch obviously not expecting that they would get back to me, let alone accept it — but they did. 

First thought: Holy poo.

Second thought: Don’t mess this up. This is really really important.

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I decided to write about the language of pregnancy loss, because it’s just so wedded to the notion of failure. Even the term ‘failed pregnancy’ and ‘miscarriage’ suggest blame — as though we didn’t do our job correctly, we didn’t ‘do’ pregnancy right, we dropped the baby. When it’s likely that we’re already desperately questioning if there’s anything we could have done to prevent it; if it happened because of something we did (or didn’t do); if we did something to deserve this; if we’re to blame — the language only serves to exacerbate this.

I only had a 700 word limit (which is NOT very much!) so there’s lots and lots that didn’t make it in — but I’m so very grateful for everyone who contributed to my research (more below) and for everyone who’s continuing the conversation. 

This post is to share some of these incredible contributions —  from both experts I spoke to, and the real women who shared their stories.

This is the article that ran:

And OMG it actually ran in print. Like in a real newspaper with my name and my photo and everything. And it said I was ‘a writer about infertility and pregnancy loss’. Which I guess technically now I’ve written a paid piece for a national newspaper I suppose I am!

(NB: the headline differs between the online and print version — neither was mine, both were written by the subeditor. The online version started as the same headline as in print, but was changed during the day, as they experimented with different copy to generate more clicks.)

OMG that’s me in the paper: The Guardian — Thu 11th Oct 2018

Words and photography by me: The Guardian — Thu 11th Oct 2018

It was also pretty mindblowing to see the article when it was first published front and centre on the main Opinion page (apols for self-indulgence) — but so happy that a piece for Baby Loss Awareness Week was being given such prominence. 

(and incredibly proud that I now have a Guardian contributor’s profile page!)

I am so, so honoured to have been given the opportunity to write about this issue, and I’m thrilled that it generated such a positive response. A number of different charities shared the article: the comments were both heartbreaking to read, and incredibly heartwarming that so many people are speaking out about their experiences of pregnancy and baby loss — because it’s only by talking that we will #BreaktheSilence.

These people were brave enough to share their own experiences, their voices deserve to be heard.

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Thank you to Tommy’s for sharing the article on Instagram — these women were brave enough to share their stories, and I thank them for making their voices heard:

I miscarried at 13 weeks August 29th: when it was described as “removal of pregnancy tissue” or “evacuation of pregnancy” it made my skin crawl.. it was our baby not just a clinical procedure. We were given excellent care from the support unit but once handed over to the surgical team to have surgical management all compassion was lost sadly.

Absolutely agree people need educating on this! We were told I probably wasn’t pregnant anyway, even though we’d already had a scan with a heartbeat, that it was probably not a ‘real’ pregnancy. I went on to have a D&C, which didn’t remove the baby. I was at home alone when I realised, when I called the EPAU unit they laughed down the phone and said it was probably a clot and could I bring it in in a Tupperware?! This is the only time in my life I have been able to get pregnant and it still stings 5 years later!

I lost my baby 13 years ago and felt so alone, so misunderstood and took a long time heal and made my subsequent pregnancy so stressful because the care just wasn’t available. I’m so relieved that the world is finally talking about these issues and that other women will get better support than I did #BLAW2018

The lost part always makes me angry as well I didn’t lose him, I wasn’t irresponsible: he was my son not my f*****g car keys!!!

Having an MVA (manual vacuum aspiration) for my third miscarriage consistently referred to by the doctor as an ‘abortion’ was surprisingly hard to hear. It’s outdated language that should never be used in a miscarriage situation. I would urge everyone to write to the hospitals in question to highlight anything from badly chosen words/phrases to poor care. Hospitals take complaints seriously and the message is passed to the relevant teams so they can try avoid it for the next poor woman/couple… Please everyone do this!

It was terrible. I had to have two ERPC for one miscarriage as they left “retained products” which were left to “rot” inside me as the consultant said!!! Devastating

I lost my baby at almost 12 weeks and the nurses who looked after me were amazing, not once did they mention trying again (other than saying it would be a possibility) they called my baby, a baby. They spoke with me about my grief and did everything they could to get me the last scan picture we had taken (baby had already passed but it was important for me to have it). On the women’s health unit, when it closes for the day any patients who stay overnight have their care managed by midwives. I couldn’t think of anything more cruel than a woman being looked after by a midwife when she no longer had a baby. The midwife had no compassion for the situation and ignored me most of the night. The doctor I saw the next day was vile! When I cried she was so patronising and told me “I know, I know, it’s almost like grieving..” I kept telling her to stop calling my baby a retained product and in the end I told her to leave. It needs to be dealt with more sensitively.

I lost my boy at 17 weeks last year. They came in to take him and I said I wanted to spend time with him and hold him. I was told something along the lines of ‘what do you want with it, it’s not a full baby yet’.

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The Miscarriage Association were also kind enough to share the article on Instagram, and again, people were courageous enough to share their own stories:

Although the NHS team who looked after me through two missed miscarriages and MVA procedures were so incredible and lovely the language they have been tutored to use was in my opinion wholly inappropriate “pregnancy tissue” rather than baby. Heartbreaking. I’m so fortunate that I am now pregnant again and in this happy instance they were more than happy to call the baby ‘a baby’ from our six week scan onwards. It doesn’t make sense.

The language around pregnancy loss has to improve. I will never forget, and am still haunted by, the lady who did our scan at 7 weeks and informed us that “this pregnancy does seem to be on its way out”. It haunts me most because she had a trainee with her. And that pregnancy was our much longed-for child.

I get really upset when medical professionals refer to my miscarriage as an abortion. It wasn’t an abortion. Having a miscarriage was not my choice.

I’ve had mine referred too as products of conception too. And spontaneous abortions. Why don’t they call it what it is? MISCARRIAGE. A loss of a BABY. Just really makes going through a loss 100% harder.

This was one of the worst parts of my whole experience. I completely broke down when my anaesthetist finally came to me and said ‘I’m so sorry for your loss’…the only member of staff out of probably 10/12 is dealt with on the day of my surgery that actually acknowledged what we were going through. Heartbreaking.

I was asked have I passed the product yet I said what product you mean my baby that had a heart beat. I had a go at the doctor for the way they worded it.

When we suffered a missed miscarriage of twins 2 years ago I opted for surgical ERPC. During the consent process the junior Doctor asked me “What do you want us to do with the biological matter after the procedure?” As a nurse (unknown to him) I went through the roof at him for his lack of empathy and instructed him to leave my room immediately. I then requested the registrar (female) came to consent me. In my professional capacity I do understand that the terminology was used as we were before the 24 week mark, however as a Mother I was devastated at the loss of my twins 4 weeks apart, not to mention the whole host of emotions I was dealing with. His words will forever haunt me. I wrote a letter of complaint but only received a generic reply. It is time that things change because a baby is a baby from the second you know you’re pregnant regardless of gestation and fetus viability.

Having been told I’d had a “failed pregnancy” and that I needed a removal of the “products of conception” I relate to this so much. I was then made to go and sit in a waiting room full of pregnant women! All I could focus on was the word “failed”, as if I’d failed or my body had failed. It’s truly awful that there is so little compassion when telling a woman her baby has no longer got a heartbeat.

This happened to me in June from an A&E doctor while I was trying to process the already devastating news that I was losing my baby. I understand they have been trained to think clinically but that Product of Conception was my little son/daughter who I had aspirations for and who I couldn’t keep alive

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Fertility Network UK also shared the article, and there were yet more people sharing their own stories in the comments:

I hate this phrase. Last year I went through an horrendous miscarriage requiring hospitalisation. All the time the Drs keep referring to our baby as a product of conception. Regardless of how far along you are, as an individual that embryo is your baby and part of you. You’d had all these dreams and thoughts about your future life with your baby, and in a heart beat it’s taken away from you. A ‘product of conception’ is not the right thing to say!

I had no idea how common miscarriages are until it happened to me and the nurse just sat there and told me that one in 4 pregnancies end this way. Like it was no big deal. Keep doing what you’re doing, you’re helping so many women feel less alone

The op I had to remove the foetus/ baby from my uterus was referred to as “evacuation of retained products of conception”. Awful

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I was overwhelmed by the reaction on social media — so sad that so many people had personal experience of this issue, but so happy that people were responding so positively to the article itself, and were comforted by this distress being openly acknowledged.

I was even more overwhelmed, and so very moved, to discover on Saturday that there was a whole section on the Guardian letters page on Sat 13th Oct for readers’ feedback (thanks to being tagged on Instagram and Twitter by two of the people who’d written in!)

I am so very very pleased to have been able to contribute to the debate in this issue:

Letters page from the Guardian — Sat 13th Oct 2018

Thank you to Rosie, Mike and Shirley for taking the time to write in and share their stories

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There was so, so much I didn’t have room to say — here are some of the highlights of my research that didn’t make it into the finished piece:

Speaking to Ruth Bender-Atik from the Miscarriage Association

The Miscarriage Association are doing phenomenal work to improve the quality of care that patients receive from clinicians when experiencing a miscarriage.

They used to run study days and workshops for healthcare professionals, and now offer learning resources on their website for HCPs that are free and easy to use — including online training videos and good practice guides, such as this one about how to talk to patients and their partners about management of miscarriage:

The Miscarriage Association are also part of the National Bereavement Care Pathway: a collaboration with other charities and with the support of the Department of Health and the All Party Parliamentary Group on Baby Loss.

The objective of the project is to ensure that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care in any experience of pregnancy or baby loss, be that Miscarriage, Termination of Pregnancy for Fetal Anomaly, Stillbirth, Neonatal Death, or Sudden Unexpected Death in Infancy up to 12 months.

It started with a pilot of 11 sites in wave 1, and is now live in 32 site across England, with pathway guidance for professionals on each of the five experiences of pregnancy or baby loss — and have published an interim evaluation of the project after six months live in the initial wave.

Ruth told me that the hospitals who are trying it are enthusiastic, and that she hopes it will become mandatory to adopt the guidelines and training.

Training about sensitive communication with patients really needs to start in medical and nursing colleges — and crucially, for clinicians to be able to deliver great care and act in a caring way, they need to be cared for and supported themselves.

I was thrilled to learn about the NBCP, which is a fantastic step to deliver on-the-ground practical improvements to the emotional support bereaved families receive. It’s easy to say ‘we need more sensitive care’, but this project is actually working to deliver this, which is so encouraging.

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Speaking to Helen Williams from the University of Birmingham

Helen is a researcher working with the National Centre for Miscarriage Research , leading a research initiative for Tommy’s dedicated to improving miscarriage support for women, partners and family:

Miscarriage isn’t just a physical experience: it is an emotional event both for mum, her partner and those around them. However, a lot of the care given after a miscarriage only focuses on physical recovery, without providing women with the emotional support they need.

We want to better understand the different feelings and ways of coping women experience after miscarriage, so we can find the best way to help those who have suffered loss. We also want to find out about the experiences of those working to care for couples that have miscarried, as well as how employers respond to miscarriages amongst their employees.

Firstly, we are carrying out a large review of other studies on women’s experiences of early miscarriage. But we want to go further, and ask women themselves. At the moment we are working with nurses and midwives to figure out the best way to sensitively approach women about this difficult topic.

The things we learn from this project will help us in training doctors, nurses and midwives to give women and their partners the care they need following loss, both emotional and physical.

More here: ‘The Lived Experiences of Miscarriage’

The project itself is exploring exactly the issues identified in the article, and I’m so thrilled that Tommy’s funding is going into researching delivering emotional, as well as clinical, care. 

Helen said they’re at the very beginning of the project, but that their initial area of focus is going to be on the male experience — because men are so neglected in delivering miscarriage support. Women are more likely to talk about their experience with their friends, but there’s no equivalent forum for men to have a space to be vulnerable and talk about their feelings. The aim is to to formulate or co-design with the participants what a helpful intervention might look like.

I think this is absolutely fantastic, as miscarriage is a bereavement that affects both parents — yet so much of the support is geared around the woman’s needs, with the man’s emotional needs often barely acknowledged. 

Helen and I are going to stay in touch, and I look forward to hearing how the research progresses.

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Speaking to Julia Bueno, a psychotherapist and counsellor

Julia Bueno is a psychotherapist and counsellor, with a particular interest in supporting lost parenthood: supporting individuals and couples who struggle to conceive, or have experienced a loss during pregnancy or after birth.

Julia was absolutely amazing to talk to — sadly she has personal experience of pregnancy loss, and brings this to bear on the support she provides to those grieving their own losses. She used to run a support group for Fertility Network UK, and now helps to facilitate a monthly support group for the Miscarriage Association. 

Next year she has a book about pregnancy loss coming out, called The Brink of Being — which I can’t wait to read.

She had so much fascinating insight into providing emotional support for miscarriage, but if I had to highlight one key takeout it would be this:

The language of pregnancy loss does have a chance of improving not unless and until we start talking about it more.

Language evolves by playing around and words will get traction once we find a term that fits. Once we start muddling through — and maybe getting it wrong — then we can start to formulate better language and start to get it right.

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Other people I spoke to

I’m enormously grateful to my amazing consultant Mr Colin Davis — who provided my husband and I with the most phenomenal clinical and emotional care throughout our fertility treatment and miscarriages — for letting me grill him with a barrage of questions, helping me to understand so much more about the clinical terminology around pregnancy loss. 

Massive thank you to Dr Larisa Corda for her time to offer her perspective on the language of pregnancy loss from the clinician’s point of view.

And thank you to the team @ Tommy’s for sharing such useful insight about the incredible work they’re doing.

And most of all, thank you to all the women and men who shared your stories with me — you are warriors, and are making such a difference by talking so openly about your experiences of pregnancy and baby loss.

#YouAreNotAlone and we are #TogetherForChange

The Daily Mail Guide to Infertility

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.

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Things to stop doing. Right now. These are practically contraceptives.

Reasons the Daily Mail says your lifestyle might be to blame for your infertility:

Women

• Not going to the hygienist often enough

• Sitting on sofas or car seats

• Using antiseptic toiletries or cleaning products

• Using heated toilet seats or drinking tap water

• Using any makeup or skincare product containing parabens

• Using tampons

• Eating any non-organic fruit and vegetables

• Using any kind of plastic whatsoever (even the ‘safe’ kind)

• Exercising too much

• Not getting enough sleep

• Chasing ‘masculine’ work goals

• Trying to conceive in spring or autumn

• Working night shifts

• Not enough zinc

• Eating takeaways

• Drinking fizzy drinks

Men

• Wearing briefs or jockeys

• Wearing cycling gear

• Using laptops, saunas or mobile phones

• Using any non-paraben-free toiletries

• Being stressed

• Being depressed

• Getting too much sleep

• Living in a city

• Too much sex

• Being obese

• Weight loss surgery

• Being vegetarian or vegan

• Eating processed meat or potatoes

• Drinking alcohol

• Taking hay fever medication

• Taking ibuprofen

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Daily Mail miracle infertility cures

Things the Daily Mail says will help you to get pregnant:

Gadgets you can buy:

• The Ava fertility wristband

• The Ava fertility wristband (again. They really like this, apparently)

• The Stork Home Conception Device

• The Ovusense fertility monitor

Specific ways you should be having sex:

• Having sex at 07:30 in March, April & May

• Having sex twice in one hour and cuddling

• Having sex twice in one night

• Having sex every other day

• Having sex in the missionary position or doggy style

Supplements you can buy:

• Proceive fertility supplement

• Pregnacare supplement

• Vitamin D supplements

• L-Carnitine supplements

Lifestyle and nutrition changes you need to make

• Stick a cushion up your top and pretend you’re pregnant

• Give up exercise and perfume

• Eat a handful of almonds, hazelnuts & walnuts every day* (ok, a handful, got it)

• Eat 2.5 oz of walnuts every day (er…how many ounces of walnuts are there in a handful? what about the other nuts in the handful? what size hands are we actually talking about?)

• Eat seafood more than twice a week

• Eat steak

• Eat salmon and dark chocolate

• Eat fish, extra virgin olive oil & chick peas, and drink full cream milk and green juices

• Drink five glasses of red wine a month

• Eat watercress

• Eat no more than one portion of carbs a day

• Drink a daily fruit smoothie

• Have just 5 close friends

Alternative therapies you need to try

• Yoga & massage

• 4h of vigorous exercise a week

• Acupuncture

• Riding on Chinese phallic stones

---

How infertility will probably kill you anyway

Reasons the Daily Mail says infertility is bad for your health:

• Infertility raises the risk of an early death by 10%

• Infertile men are up to three times more likely to develop aggressive prostate cancer

• Men with low sperm counts are at increased risk of heart disease and diabetes

• IVF ‘may double the risk of women giving birth prematurely’

• Children born after IVF may have a greater risk of developing heart disease than those conceived naturally

---

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”

Photo by Nadine Shaabana on Unsplash

[ 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 I 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

[ 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

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.

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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:

“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.