All in all, I am beyond tired and recently worked out I have only had two months in a row since September 2021 where I wasn’t taking some form of fertility drug. The cruelty of discovering my AMH was below 1 at age 36, and that on average I have just 2-4 follicles to play with month to month is just how fast I’ve had to make life-altering decisions and move through treatments. How I haven’t been able to afford any rest or ‘time off’ if I want the best chance of having a genetic child with my fiancé Joe. It has been relentless and we are now seriously considering our remaining options and how much more my body, mind and spirit can take.

It all started in February 2020 when I had my coil removed. I was 35 and Joe and I had been together for 18 months. We were keen to start trying for a family, but my coil had become displaced, so I ended up having to wait an extra five months to have it removed via hysteroscopy. Astonishingly I fell pregnant on our first try. It was so fast I didn’t even have a period before I saw the positive sign on a test in April 2020. Now, looking back I feel foolish for assuming we must have been ‘super fertile’. The world was a month into the first lockdown and so we kept the news to ourselves and enjoyed our bubble of happiness. It was a really special time. I was still working as a midwife, my career for the previous 12 years and although I knew the statistics for miscarriage well I felt confident, after seeing our baby’s heartbeat on an early scan following a small bleed after intercourse. A month later I was at work when I suddenly began bleeding again. I arranged a scan with my local EPAU but by the next morning my breasts had deflated overnight, and it was then thatI knew. Two days later an ultrasound confirmed that I had suffered a missed miscarriage at 8 weeks. What was really difficult to contend with was the fact there was no baby to be seen, just an empty gestational sac. I had been nurturing a ghost for weeks. I felt utterly cheated and cursed myself for recently buying a bigger bra and floaty dresses for my future bump. Instantly,I went into clinical-midwife-mode, which was wanting to be medically managed so that I could get straight back to trying again. The few weeks taster of pregnancy and the promise of parenthood had been blissful, almost other-worldly.I just couldn’t go back to who I was before. I needed to be a Mum.

After a painless textbook medical management at home, I was ready to chalk it all up to ‘one of those things’ and relied heavily on my belief it may have been the fact I hadn’t had a period before falling pregnant– maybe, in this instance my lining was to blame? Unfortunately, over the rest of the year I struggled with not only regulating my cycle – which varied between 19-76 days with very light periods – but also my mental health as I tried to process my grief whilst working where my miscarriage began. By the end of 2020 I had left my job (I never worked as a midwife again) and had started therapy, with acupuncture for my menstrual health.

In the New Year I had baseline Day 3 fertility bloods taken that were normal but the AMH I had managed to request from my GP was anything but. Learning my AMH was below 1 from a locum GP who didn’t understand what they were telling me and had no advice to give was jarring, to say the least.My world collapsed. I knew enough about fertility to know this result meant that having a baby was going to be very difficult and that time was not on our side. Thankfully my NHS referral for IVF happened quickly and by July 2021 we were all set for our round. What we didn’t expect was the discovery that I was pregnant again just before starting medications for down regulation. However, the joy was short-lived as I was losing old blood and had continued to have ‘periods’. I had no idea how far along I was (embarrassing for a midwife!) and something just didn’t feel right as I’d had no symptoms.

A few days later my misgivings were validated when an ultrasound showed, yet again we had suffered a missed miscarriage. This time there was a baby measuring 7 weeks – my calculations from this information were that I was actually 9 weeks, and hauntingly that when we found out this baby existed with the pregnancy test a week earlier, they had already left us. This time in my life was head-spinning. To have ‘not’ been pregnant and mentally set for IVF, to then go through a shock discovery and another medical management at home (this time seeing my baby – a choice I made and am glad to have), to then having to delay IVF by three months due to this was overwhelming. However, now with my knowledge of my raised killer cells, I know that I wouldn’t have tested for this had I not had a second miscarriage. I wasn’t to be a mother from this pregnancy, but it was instrumental in me gaining important diagnoses later on in the journey.

Our first IVF round in November 2021 resulted in one frozen embryo from only two eggs. We were overjoyed as we knew how unlikely this was.We couldn’t transfer it fresh at the time because my lining had become too thin after the trigger shot (a frustrating side effect). We tried two heavily medicated attempts to transfer this embryo in the February and March of 2022 but both times my thin endometrium persisted, whilst the side effects from a truckload of oestrogen took me to the edge of my sanity. This was a real low point for us. We had an embryo we couldn’t use. Life felt particularly cruel, and we had to completely reassess our approach. This meant leaving NHS treatment whichI felt just wasn’t bespoke or tailored enough to my situation. I quickly made appointments at a private IVF clinic and also with a private miscarriage specialist clinic. By June I had my diagnosis of raised killer cells and a raised TNF Alpha. My immune system was affecting my chances of a pregnancy being successful. My hunch about this was right and I was given a protocol of treatment to use when trying naturally or going through an embryo transfer. This news was bittersweet as I couldn’t help but wonder if our other pregnancies may have had a chance, had we known this prior. It was also hard to contend with the idea that my body was attacking our longed for babies but unlike a lot of women who suffer miscarriages we actually had an answer. Knowledge is empowering, even when it’s hard to digest.

By July we were ready to start three freeze-all IVF rounds, with PGT-A testing and ICSI, after discovering Joe’s sperm DNA fragmentation was raised. He started a new supplement then to help combat this and when he was re tested in October it had thankfully normalised. Our three private rounds all failed for different reasons. The first was the best result and they got progressively worse after that. By August we had collected 4 eggs with 3fertilised and 2 that made it to blastocyst. One of these was PGT-A tested and unfortunately the other eventually deemed too poor quality to use and was discarded. But we had hope, our Consultant said that for my age (37) at this stage, 65% of embryos were genetically normal. I received the news that we were sadly in the 35% alone in a park walking our dog, Skyla. Our precious embryo was abnormal and after £8000, 33 injections and 8 trips to London we had nothing. The next round nothing even made it into the lab, with only 2follicles and on egg collection one follicle being empty and the other possibly containing an egg that couldn’t be aspirated with the consensus being that the trigger shot (having worked twice before) hadn’t this time. It was a new kind of grief to not even get an egg to work with. Our final round was cancelled prior to egg collection with only one tiny follicle that eventually disappeared altogether, a bit like my remaining positivity.

At this point we decided to move on to trying naturally with a super ovulation programme provided by the miscarriage clinic with killer cell treatment. This costs up to £1000 a month to use. Right now, I’m in the midst of trying to do that struggling with a very unreliable cycle, having experience da 92 day cycle (yes, you read that right – a quarter of a year in my time-sensitive situation!) followed by my last one being unusable because I’d already ovulated by day 7. There have been some blood results this year that are also concerning for premature menopause although it can’t be confirmed or disproved yet, so I’m living with the guillotine of the loss of my genetics hanging over me whilst really feeling there’s nothing I can do to get pregnant right now. This type of programme needs a regular cycle to be used to its full potential, something I just don’t have. What I do have, is one frozen embryo.In the next few months, we will prepare to transfer what really feels like our last chance at a child genetically related to me. And to think almost exactly three years ago to the day I was conceiving pretty much instantly the first time I’d ever tried to!

I’m still here, still battling, still finding passion for life but I am forever changed. I’ve learnt so much over the intensity of the last three years I’d love to end by sharing just a few of my tips for navigating your own fertility journey.

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1.    If you can afford to, go private. Even for preliminary tests or an expert opinion. The NHS provision for fertility treatment is basic and one round is unlikely to be enough, so even if you do get your funded treatment consider the fact you may need more cycles into your plans. Also, the NHS wait times in comparison are long and timeframes can be the difference between having a baby and not in cases of diminished reserve or advancing maternal age. Knowledge truly is power within fertility, make sure you have it all.

2.    If something doesn’t feel right, it probably isn’t. I’m so glad that we decided to stop trying to transfer our embryo, because I didn’t know about my killer cells at that point and now we have the chance to transfer it with the best care and chance of the best outcome. Your intuition will become your compass. It’s hard to hear it over the anxiety and general pessimism whilst struggling to conceive, but using mindfulness practices like meditation/journalling not only helps to lower stress but makes it easier to hear what your gut is telling you. Trust yourself, always.

 

3.    Make sure you plan to do nice things for yourself regularly. This time is so tough. It affects every part of your life, so get accustomed to celebrating the small wins or survivals. Treat yourself often with things that make you feel good, happy, safe, loved and fill you with wonder. You are grappling with trauma and grief alongside side effects and physical changes and immense fatigue. You must prioritise your well-being above all else.

 

4.    Work on acceptance of your reality. I have found the concept of ‘radical acceptance’ very helpful during my journey. It means having a willingness to accept the present moment as it is, moving away from the suffering of wishing for things to be different. It’s not easy!But it has helped me to keep moving forward and not ruminate on the past and what cannot be changed.

 

5.    Consider professional support as well as friends and family who are a safe space. There aren’t many people who ‘get it’ with infertility. Work out who you can really share how you’re feeling with amongst family and friends and nurture those connections. You may find what you are going through causes strain on friendships at a time that everyone is having babies. The feelings of isolation are very real. There is research that suggests the level of anxiety and depression amongst women suffering within fertility is the same as those with a cancer or HIV diagnosis. Seek out professional help with a counsellor or therapist sooner that you think you need it and look at support groups online that might be useful to feel seen and heard.

At the IVFN, we recognise that the range of choices, clinics and options available for assisted conception, can sometimes feel overwhelming. Through our website, blog posts and dedicated channel, our aim is to provide the information and advice you’ll need, in a simple and non-biased way, to support you on your own fertility journey.  Read Katy’s real life story about, Infertility, Loss and Success