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My Story

By Bud / 2nd Mar, 2017

It hit me like a freight train – that sudden need to have children. My then boyfriend (now husband), joking about our future, asked “How would you decorate the nursery?” and it was like a switch had been flipped.

I became completely infatuated. The raw maternal urge completely took over and I saw babies & families everywhere.

I’d spend hours secretly browsing cots and nurseries online. We constantly talked about parenting scenarios and we even picked names. I changed as a person; instead of dreaming of far-away adventures I pictured us dealing with 2am night-feeds – I can still imagine my husband singing to our baby to settle him. I hate picturing that now though because it is simply too painful.

My husband had good traditional family values, so he was certain that he wanted to be married before we started trying for our family. We waited, planned, and then we waited some more. After four and a half years of dating, we tied the knot. I know it’s cliché, but it was the perfect day. Our wedding day wasn’t just the start of our marriage, it marked the start of our family.

We went on the most idyllic honeymoon, we lived in bliss and dreamt of the perfect honeymoon baby. It was asking for a lot, and it didn’t happen, so we stayed positive and kept trying. A few months later, with no luck, we thought the logical next stage would be to step up our attempts; we tracked ovulation, ate certain foods, bought special vitamins, and invested in a tonne of old wives’ tales. We really tried everything we could.

We nodded politely as people asked ‘So, planning any kids then?’ or ‘Is the pitter patter of tiny feet coming for you soon?’, when we were slowly breaking inside. Months went by and still no pregnancy – although by this point we were experts at looking for ‘squinters’ on pregnancy tests. Ghost lines on tests were there one minute and gone the next. For every sign we were sure was evident, the eventual failure was even harder to take.

Something felt wrong. We visited our doctors who were sympathetic, but sent us away for another three months. We were waiting again. Those last three months felt like a ticking clock, I remember desperately thinking that I needed to fall pregnant by the end of those three months otherwise there as an actual chance something could be wrong.

Three months later, still no pregnancy. We revisited the doctor who referred us for some preliminary tests. There were a couple of issues with the tests going wrong; we were told there was an error in the laboratory. We waited some more.

We decided that we needed to grow our family, so whilst waiting for test results, we finally picked up the third member – a gorgeous puppy. We devoted our time to training classes, puppy games and everything else puppy related. Our beautiful girl saved us. She was (and still is) a huge comfort. She was the distraction that we so desperately needed. Sometimes, all you need is a sassy little puppy who thinks she’s a Beyoncé, Kim Kardashian, and Paris Hilton hybrid to take your mind off being dealt a heavy blow.

We weren’t in the same location when the test results came in – I regret that. We should have been together. The results were not good. We had a very clear and definite diagnosis of infertility. We could not have children naturally – assisted conception, in the form of IVF, was our only chance of ever having children. We were in shock, we grieved. Our one saving grace was that the results came through on a Friday afternoon, so we had the weekend to ourselves before we had to face the world. We decided that this would be ‘day zero’, – the worst day and most importantly, we decided that we would face everything from then on as a team. Every day from that day would be better, because we at least had knowledge – even if we didn’t have hope.

We made a choice to be open about being infertile, although we would never disclose our diagnosis. Our diagnosis didn’t matter, we didn’t want either of us to feel guilt or blame, we just wanted to focus on what we needed to do next. We still get asked ‘whose fault is it?’ and we politely respond “That’s not how we think about it, we don’t assign fault or blame, we just look to our future”.

We were ‘lucky’, we were told our local area funded three cycles of IVF. We held onto that as hope. We may be infertile but we were going to get the most clinically effective treatment. We waited, again, for an appointment with our Consultant. He sent us for yet more tests.

Six months after our initial diagnosis we were finally referred to our IVF clinic. It was at this point we were told our funding had been cut, instead of three cycles of IVF, we would only have one. One single opportunity to get pregnant. I cannot explain the fear or pressure that was loaded upon us in that single phone call. We couldn’t believe our NHS had let us down so badly.

We campaigned locally, and nationally, to get change. We learned of the postcode lottery horror that so many couples in England fall victim to; we could not believe we were living in 21st century England. It hardly screams equality.

When our IVF cycle finally came around 378 days after day zero, we did everything we could to make it successful. We spent £150 a month on vitamins, we tried acupuncture and special fertility booster diets, we banned caffeine and we did other things too. We hired a cleaner so we could rest. After waiting for so long, we wanted to give our single opportunity the best shot and we wanted IVF to be a positive experience.

We recognised that IVF would be a huge part of our life, so we wanted to do something to measure the milestones and raise awareness. We started to work with a lovely designer (Sweet Pea Paperie) to design some IVF milestone cards, whilst we engaged with an Infertility Support group to come up with a list of key IVF events.

The cards were perfect and a huge hit, not just with us as patients, but with friends and family who could follow our journey and with the staff at the IVF clinic too. They were great at making each of the IVF milestones more bearable. I always smile when I see people using the cards now, knowing how much they helped me.

It’s important to remember that whilst the infertility journey is happening, normal life goes on. We were seeing friends and family get pregnant seemingly easily, we were still working full time, and we had started to buy a house. At the same time, infertility seemed to put our life on hold, we couldn’t book a holiday ‘just in case’, we couldn’t change jobs ‘just in case’, we couldn’t decorate ‘just in case’, we became trapped.

IVF, for us, was exhausting. We had days where everything became a bit too emotional and we came close to abandoning our cycle, but the drive for a family kept us going. We had so much support and we are so thankful for that. Our marriage has undoubtedly become stronger because of our infertility and, in my eyes, we didn’t just survive IVF but we aced it.

After embryo transfer, we really embraced being ‘pregnant until proven otherwise’. My husband spoke to my almost pregnant belly. I enjoyed picturing our family and started to think about possible due dates. It was a blissful ignorance that we allowed ourselves. After years of waiting and trying, we were very almost pregnant. This was it.

Our cycle failed.

It’s hard writing that even now. Our cycle failed. We didn’t have any frozen embryos. That was almost 6 months ago, and I am still grieving. It’s a different type of grief though – there was nothing tangible for anyone else to see, so it seemed hard for them to understand.

I cannot, in words, explain the heart-break my husband and I feel daily; it is a grief that never leaves. It does not get easier, it gets worse as more time is lost. I feel that pain when I see a family in the supermarket. I feel it when an advert for baby products appears. I feel it when I see my parents, knowing they won’t have grandchildren. I feel it when I give my seat to the pregnant woman on the bus. I feel it when I question my value and self-worth as ‘not a mum’. It is a feeling that will never ease – it does intensify.

I have fought hard and passionately to become a mother, through fertility treatment and through campaigns. I know that if the opportunity ever did arise, my husband and I would make great parents, but that decision has been taken away from us – not just by our infertility diagnosis, or by our failed cycle, but by the Commissioners when they made the decision to remove the most cost and clinically effective treatment for us and other patients.

I will not get to see my son’s first steps, or my daughter’s first day at school. I will not get to see my son’s first day at University or my daughter’s wedding day. I will not get to meet my grandchildren. I will not be able to fulfil, what I feel is, my purpose in life. Instead, I ask myself ‘Will I always feel social exclusion? Will we be lonely when we reach old age? Who will we leave the house to when we pass?’. Not easy questions and far from the happy life that some take for granted. However, this doesn’t just impact on us. Infertility directly impacts so many more people, with a wider impact on friends and family too.

So, what next for us?

We needed our IVF cycle to have some sort of positive outcome so I decided to walk over hot-coals (literally) to raise money for Fertility Network UK. We raised over £400 and I’m thankful to everyone who supported me through that journey.

We’re saving for our second cycle of IVF. We will not to be beaten by infertility, we’re determined to enjoy our marriage and our life, so for that reason, our second cycle will be our last. If our next IVF cycle fails, we will take some time and review our options. We realise that, in a way, we are lucky. We are so grateful for the family that we do have – our two dogs are fantastic (our second puppy came home the week our IVF cycle failed – he is another saviour), and our parents and siblings have been truly supportive. We cannot thank our friends and family enough for sticking by us when times have been tough.

We have learned a few lessons along the way; how to be patient, how to nod politely and show restraint when someone says ‘just relax’, how to administer injections at home, how to apply a ‘brave face’, how to find humour in the worst circumstances, how to be the best team, how a failed IVF cycle doesn’t mean your life is over and how to enjoy the family that we have.

We continue to challenge both locally and nationally to end the postcode lottery. In January, we were privileged to attend a debate in the House of Commons. Nicola Blackwood, the Parliamentary Under-Secretary of State for Health, stated “It is the Government’s view that infertility is a serious medical condition. Those suffering from infertility who meet the criteria in the NICE fertility guidelines for NHS-funded treatment should be able to seek that treatment. We do not agree that clinical infertility should not be part of a comprehensive national health service. Reflecting on the strength of feeling expressed today, I will be writing to NHS England to ask that it communicates clearly to CCGs the expectation that NICE guidelines should be followed by all.”

We believe the government are slowly taking steps in the right direction to promote equality of IVF provision – although it cannot come quick enough. I would advise anyone reading, impacted by the postcode lottery, to seek support from Fertility Network UK – they will help you.

 

Written by Bud

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