The pain of infertility

This week was National Fertility Awareness week. The aim of the campaign is to raise awareness of fertility issues, the treatment they require and to provide support to the couples that need help.

One in six couples will experience fertility problems. One in SIX. Think of your group of friends; one of them is likely to be in their wilderness years, and I can tell you from bitter experience, it sucks. Your friend may not have told you about their struggle to conceive. They might shrug off their childlessness or failure to produce a sibling for their firstborn with a brave, “Oh no, I like my lie ins too much.” or “How can we improve on our perfect firstborn?”. Trust me, inside they are bleeding.
Unless you’ve lived in the doldrums, you cannot imagine how hard it really is. On the outside, you look okay. You look healthy, a functioning human being. You keep yourself busy. So busy that finding time to spend with friends with children becomes difficult, accidentally on purpose. But inside, something definitely isn’t working and even the most pervasive painkillers won’t stop it hurting.
Every time you log into Facebook, someone has posted a scan picture. Every time you go to the supermarket, you wish you had blinkers on to avoid the protruding bellies and glowing faces. Even popping into Costa for a caffeine fix isn’t safe; over in the corner is an NCT meet up, with perfect babies in their mothers’ arms. Suddenly, yours just feel so empty. In fact, all of you just feels empty. Cavernous. Empty, empty, empty.
Every month, you bleed and you mourn the loss of another opportunity. You cry, you hit the wine and you order an enormous take away. It doesn’t help. As your period subsides, you begin to build your hopes again. You buy gadgets that will tell you exactly when to jump on your partner (these are real passion killers). Instead of cosy pillow time, you shove a pillow under your pelvis and start bicycling your legs like crazy. You don’t drink. You only eat fertility foods. You have acupuncture, reflexology and any other ology that someone has told you might help. This time… It’s definitely worked, this time. And then you start to bleed again, and the tears just keep coming.
Then there are the people; oh my, the people. The helpful friends that tell you their partner only had to look at them (bully for you), that you need to relax (oh, silly me, I’ll just pop my desperate desire for a child out of my mind!) and even question if you’re ‘doing it’ right (yes, really). Then they’ll ask why you don’t ‘just adopt’. Adoption is a huge process in itself – it’s not like going to the supermarket and picking a child off the shelf. For some, it signifies an acceptance that a natural child is never going to happen for them and to these brave people, I take my hat off to you.
You may not know that your friend is currently going through IVF. They may have just gone a bit quiet while they’re treading the path through their own private hell. The process is overwhelming and all consuming, so if you suspect they’re going through a cycle, just back off – especially in the first two weeks.
In most protocols, the first fortnight is spent being plunged into menopause by a drug called Buserelin. When we undertook our first cycle, our lovely consultant told Lovely Husband to go on holiday. By himself. Mood swings, hot sweats, headaches on top of headaches and absolute exhaustion start as soon as the needle has left your skin for the first time. For the first time in years, you wish for your period to start. When it does… If it does (sometimes the Painted Lady likes to play her own little games on you and mess up your plan) you then live for your scan that tells you all is quiet and you can start to stimulate your ovaries to create eggs.
Now, your ovary is about the size of an egg. During ovulation, it grows to around the size of a walnut. During IVF, it grows to the size of a large orange. So yes, the uppers improve your mood a little, but you bloat and look pregnant, prompting the obvious questions. You need to drink gallons of water to prevent a condition called Ovarian Hyperstimulation Syndrome that could put you in intensive care. You live for the progress scans. The stress of these is worse than running huge budgets for major companies (trust me, I’ve done both). If you’re not ‘performing’ as the clinic want, your cycle is scuppered. Eventually, you (hopefully) get there. Egg collection. A surgical procedure to remove up to 20 eggs from your ovaries using a long needle.
Then the 24 hour wait to see if anything has fertilised. In our first cycle, nothing happened. The embryologist called and said it was like a school disco with the girls on one side and the boys on the other. We moved on to a more intrusive process called ICSI, which ultimately was successful, but I’ve seen friends who’s cycles have failed and every time, my heart has broken for them.
Assuming you successfully made embryos, you go for transfer and begin the bum bullets – a progesterone supplement that supports a potential pregnancy. The side effects mimic those of early pregnancy. You will feel nauseous, have sore breasts and go off certain foods. For the next two weeks, while you wait to carry out a pregnancy test, you live on a see-saw of has-it-hasn’t-it-worked. You plunge from wild optimism to abject despair at what you’ll do if it fails.
Your friend is dealing with all of this; they don’t want to deal with you as well. That said, if they tell you they’re going through IVF, be there. Listen to them. Don’t feign interest – really listen. Be there with a bottle of wine and a vat of chocolate if it fails and let them cry. Whatever you do, don’t dismiss it. And for god’s sake, don’t ask why they don’t just adopt.
The World Health Organisation lists Infertility as a health condition, meaning that sufferers can and should be offered treatment. With so many primary care trusts now refusing to fund IVF and the criteria for those that do provide funding becoming ever more obscure, the treatment of couples suffering from infertility is becoming inhumane and the condition is being labelled as a ‘lifestyle choice’. And that’s just it, it’s not a choice. PCTs will fund gastric bands, treatment for smoking and drug related conditions and not those that are living with failure to conceive? If we’re going to base clinical treatment decisions on whether a condition is borne because of a lifestyle choice, then we can slash the NHS budget considerably. Infertility leads to mental health issues, depression being a major factor. Is that a ‘lifestyle choice’ too?
I realise it’s not that simple, and I shouldn’t be flippant. I realise that not every couple can be helped, just as not every cancer sufferer can be saved. But this condition needs to stop being brushed under the carpet as something appertaining to ‘lifestyle’, or being labelled a ‘choice’, because trust me – those wandering in the wilderness really do not choose to be there and think about the process itself: Would you choose to go through that?
We have always been open about our wilderness years and the inception of the three ICSI pixies, and our consequent Miracle. But they are all miracles and without funding to those that need it, the joy of parenthood for those with fertility issues will become domain of the rich.

Find out more about National Fertility Awareness campaigns and give your support: http://fertilitynetworkuk.org/national-fertility-awareness-week-2017/
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The pain of infertility

On the eve of Mother’s Day

Today I went to do the pixie’s Big Shop for the next season. Big passes her clothes down to Medium in nearly new condition. Medium trashes them and Little gets new ones. I like to dress my children like children, so I am increasingly shocked by the ripped denim hot pants and sloganed t-shirts on offer to kids as little as four. Seriously, who dresses their children in this tat? Who wants their four-year-old to have their pants on display?

That frustration aside, it was a lovely day spent with my mum. The sun was shining as we went (waddled, for me) from shop to shop with frequent tea  breaks. I’m huge with the Miracle. I’m measuring a fortnight ahead and at 31+3w, I look ready to pop. I feel it too. The Miracle mainly likes sitting on my sciatic nerve (ouch!) and trampolining on my bladder. My blood sugars have just started to misbehave and I’ve started Metformin tablets and a diet of denial. Lovely Husband has a list of All The Nice Things he must buy/make me after the placenta has been delivered and I am back to normal. Salted caramel cheesecake, I’m coming for you.

I returned home to a newly poorly Medium. Just as we seemed to get rid of the bugs, it looks like a new one has moved in. I’m hoping Mother’s Day isn’t cancelled for us tomorrow.

Some, I know, will be wishing Mother’s Day could be cancelled. They’ve faced weeks of reminders about the impending day and each one will have been a twist of the knife embedded in their heart. Women who have lost their own mothers, lost their babies or simply can’t seem to have a child. Having Mother’s Day shoved down their throat is a bitter pill and one few will feel able to swallow.

While we hope to celebrate after our rocky but ultimately amazing journey to parenthood with our three ICSI pixies and now the Miracle, I will have a quiet moment to send vibes of solidarity to those that are deep in the wilderness. Those that are in the throes of the rollercoaster of IVF, of dusting themselves off after yet another disappointment, waiting for appointments or wincing as they jab themselves with powerful hormones that will make them feel like they’re going crazy. I will raise a glass to these strong women and hope that this time next year, they’re getting a slobbery kiss from the baby they’ve longed for.

As the Miracle kicks away inside me after a lovely day spent with my mum, I know I’m one of the lucky ones.

On the eve of Mother’s Day

A reprieve

We couldn’t do it. When push came to shove, although the form was filled out and the envelope stamped, we couldn’t let those tiny balls of cells perish. Not yet.

The Miracle has shown us that we want a fourth child and if – God forbid – something went wrong, we want to make that happen. We might have managed to do it ourselves this time, but there’s no guarantee that it would happen again. In all likelihood, the Miracle is a one-off. A fluke. Something that changed in our biology for a nanosecond.

But this episode shows the complexity of the emotions that IVF/ICSI causes, even further down the line when you have managed to have children. Though they are invisible to the naked eye and merely a bundle of cells, there is still an emotional attachment. They are still potential children. The clinic doesn’t prepare you for this stage. They carefully walk you through scenarios whereby you or your partner dies. Will you give consent for your frosties still to be used in the event of their or your death? That was a hard enough question. What they don’t do is counsel you on what you do when your family is complete and yet there are three more in the freezer. They don’t warn you of the effect that decision you must make will have. Or maybe it’s just me. Maybe others can clinically decide, viewing their straws* as a bundle of cells, rather than as a possible life. I guess this is where the ethics are tricky.

I freely admit that part of me feels we have an insurance policy in that freezer. What if one of the pixies was to fall ill and needed some sort of help from a sibling? Stem cells, umbilical cord cells, whatever other cells clever doctors use in these scenarios. It’s probably not an ethical way to view the frosties either. They weren’t created for spare parts.

I am relieved. I am relieved they will stay in their wintery sleep for at least another year. After the Miracle arrives, I may feel differently. My hormones and emotions may have calmed down and I may be able to view the situation more pragmatically. If so, then I hope the clinic obtains a research license and our little frosties can help others out of their wilderness years. I’d love to offer a hand to those that are in that awful place that we’ve now left behind us.

*Frozen embryos are stored individually in straws.

A reprieve

A goodbye to those I’ve not met

Dear Frosties

Yesterday, we got The Letter from the very clever people at the clinic where you were made. I don’t know why they chose Little to be placed back inside Mummy instead of you. Little got herself cosy, and you were frozen. Knowing Little, she probably thumped you and made you stand behind her.

I dread this letter arriving. Did we want to keep the three of you frozen at -196 degC for another year, or will we let you go? They didn’t phrase it quite so kindly. They asked if we wanted to let you perish.

Perish. Taken out of your wintery sleep and left to fade away. A story that will never be told. A life that will not be lived. The very wording of the letter hits me square in the heart every time. With the Miracle growing inside me, my hormones are all over the place, and being asked if I can let my three potential babies perish is a bitter choice to make.

We were so lucky. Not only did we manage to make embryos, but they seemed to stick too. I don’t think of you as ‘leftovers’, but you were there in case we needed to try again. I don’t know if you are boys or girls or if you’d have blue eyes like me or brown eyes like Daddy. I don’t know if you’d have even survived being defrosted, but you’ve been on the periphery of my consciousness since you were made. I knew you were there and that you were safe.

With the Miracle on his or her way and your three ICSI pixie sisters, one of whom, like you, spent a year frozen at -196 degC, we’ll be done. Our family will be complete. But the nurturing, maternal heart inside me grieves for you, even though we’ve never met. I’ll never know who you were or what you might do.

It’s given me a shock. I thought the trauma of fertility treatment was over. We had our glorious girls, and our Miracle to boot. Yet this decision has affected me deeply. We’ve had to let you go. We cannot give you to others, or even to other clever people to learn how to help other couples escape from the hellish wilderness years. We couldn’t leave you in the freezer forever.

I don’t know if there’s a place you can go to while your soul waits for another Mummy and Daddy. I like to think there is. And if there is, I hope you get the nicest family in the world – full of warmth where you’ll never be cold again.

So goodbye, my nearly loves. The ones that never were.

xxx

*This is a photograph of the frosty that became Medium as a three-day embryo, defrosted after a year in storage the day before.

sl_embryo

A goodbye to those I’ve not met

A monumental curve ball

I’ve been busy, friends. Busy trying to get my head around something huge.

So, there I was, smugly sticking to my Slimming World and gym regime. I lost a stone. I could feel my body changing and my fitness levels increasing. My riding was improving. My body was beginning to respond to my brain and my reactions were quicker. I felt great. I was making plans with pony pals to camp at Badminton, to do a dressage boot camp and hack around Wales, mainly drunk. I was thinking of going to Portugal to buy a youngster that would come over in a couple of years.

Then I stopped feeling great. I felt knackered. I felt dizzy and a bit sick. I wanted to be in bed, asleep, all the time. Just doing the school run felt like wading through treacle. I was short-tempered, easily irritated and headachey. My period, always unreliable at the best of times, was late, but that was irrelevant because during the wilderness years, our very clever and very lovely consultant told us that we had more chance of winning the lottery than conceiving naturally.  32 million people play the National Lottery. Your odds of winning are apparently 14 million to one. I don’t know how ‘they’ worked that particular statistic out; maths isn’t my strong point.

One Sunday morning a few weeks ago, I was digging through stuff and happened across an old pregnancy test that I’d shoved in a drawer when I was expecting Little. Knowing it would be negative, and still feeling rubbish, I peed on the stick and carried on getting ready to go to man the pre-school cake stall at a village event. Giving the stick a cursory glance a few minutes later, I nearly passed out. Very clearly displayed on the screen was a decisive ‘PREGNANT’. What. The. Actual. Fuck.

I called to Lovely Husband that I needed him upstairs straight away. He replied that he needed me downstairs as Medium had just spat her antibiotic everywhere. “No, no,” I said. “I definitely need you up here more.” He came upstairs and I handed it to him, simply saying: “This has to be faulty.” His reaction? What. The. Actual. Fuck.

Dumping a sticky Medium in the bath, I rooted around the bathroom cupboard desperately hoping to find another test. I struck gold. Those that have experienced infertility and consequent treatments will know how many pregnancy tests you buy and stash around the house. This test also said I was pregnant.

Somewhat dazed, I went and did my stint on the stall. Then I got home and Googled all the reasons you might get a false positive on a pregnancy test. I don’t recommend that anyone does this. By the time we went for an early scan, I’d convinced myself that I had a brain tumour. Fortunately, the scan showed us a little bean with a beating heart. Lovely Husband cried and laughed simultaneously.

We’ve now had our 12 week scan and I have spent the last month in huge jumpers and with my coat zipped up on warm days to hide my burgeoning bump. At 41, the odds are against me and we didn’t want to let the cat out of the bag until we had to. I’m struggling to do up my coat now. We’re still waiting for our odds on the scary screening tests, but we didn’t get the ‘within three working days call for further testing’, so we can finally breathe out.

To be honest, even though I saw a distinctly baby shaped object on the screen last week, I saw him/her move, wave at us, suck their little thumb and their heart beat, I still can’t believe it. Early pregnancy is a funny old time anyway, but to have been told it’ll never happen and then for it to do just that is… Well, frankly a complete and utter mind fuck.

I’d given everything away. My maternity clothes all went to a charity shop and our baby stuff is currently being used by a friend. One who – phew – I know will look after it and let us have it back. Baby #4 would be an expensive miracle otherwise.

And that is just what Baby #4 is. A miracle. A little soul that clearly wants to be born. And how blessed are we that he/she has chosen us? I’m choosing to focus on that and not that I will have four children under six in May. There’s Valium for that, right?

baby-4-12w-scan_1
A monumental curve ball