Dearest all,
I promised myself that once my journey was over, I would share what I wish I had known before embarking on this rollercoaster - all the brutal lessons I have learnt over a heartbreaking five-year journey that involved five egg collections, numerous transfers and miscarriages. Please remember, this is my experience, and each journey is different.
IVF will forever be part of who I have grown to be, hopefully, more compassionate, more resilient and, yes, very traumatised.
You are stronger than you think you are xx
1) If it isn’t working, change the approach
Our first cycle resulted in nothing to transfer. I was beyond devastated. The doctor told me to do it again, so I did. Disaster. I then started looking for another clinic, to my surprise, doctors at other clinics also suggested we use the same short protocol, even though I had a problem with too many immature eggs. It felt wrong - why would I keep doing the same thing mindlessly? I had another consultation with the Medical Director at a new clinic - he finally suggested something new: long protocol, growth hormone and a new set of drugs. He explained that short protocol was “unforgiving” for immature eggs. We tried it and to my amazement, it worked. I got double the amount of mature eggs. There is an unhealthy power dynamic between patients and doctors, but do not let this intimidate you. They are human and susceptible to the same biases and the occasional poor decision-making as all of us - question them. If something isn’t working, you have a right to question it. Speak to as many doctors as you can before deciding what is right for you - this can be expensive, but, for example, some brilliant clinics in Greece offer free remote consultations with their lead consultants.
2) Test, test, test
The fertility world is sexist - it is always the woman’s eggs at fault, right? Wrong. We went through two pointless egg collections that were a complete waste of mental energy, time and money because the doctor didn’t a) test my partner’s sperm (he has 42% DNA fragmentation and b) test my tubes (I had a huge hydrosalpinx which meant any precious embryo transferred would probably have not been able to implant. After two failed cycles, we realised we both needed operations before we could do IVF again. If we had done proper testing at the beginning of our journey, we wouldn’t have wasted so much time, money and heartache.
3) It’s a journey (yes, but it really is)
We say this all the time: it is a journey, but it really is. I went into IVF at 35 thinking I was young enough to get immediate results. Boy, I was in for a shock. Every cycle seemed to present a new challenge. It is important to remember that some journeys are longer than others - some people have success the first time, for others, it can take years. Again, never compare. No journey is the same. It is important to take a balanced approach. As one midwife said to me: “be cautiously optimistic.”
4) You (mostly) don’t have control over this
We want to control this process, even though we can’t. So, instead, we obsess over vitamins, plastic-free bottles, the right kind of food, organic everything, and other ways to make this work. Inside, I blamed myself and my body so I thought I could change things. You need to release yourself - do your research and trust the medical professionals. It is your medical protocol that will make the difference, not how much your vitamins cost.
5) IVF must NOT define you
During my journey, I became obsessed. Babies were everywhere. I refused to eat anything in plastic. I became paralysed at the thought of my eggs growing older and older - I felt like a ticking time bomb. With every pregnancy announcement, I became more grateful for lockdowns; I was thankful I didn’t have to engage with anyone during lockdowns: It became too painful. I scrolled this forum about four hours a day, I was persistently reading about fertility and it was all I could talk about. I left my career abroad to come home just for IVF treatment. My whole identity was based on my fertility, my identity as a woman was intrinsically tied to the idea of being a mother. Without IVF, I felt I had nothing. I forgot who I was. I forgot what it meant to be happy - to be human. This forum has been a lifesaver, but I got too obsessed. I blocked all fertility sites for a few months whilst doing treatment to remind myself that this is MY journey and not comparable to anyone else.
6) Grief or depression?
How would I describe multi-IVF cycles? Jumping off a cliff, breaking all your bones and then doing it again, and again, and again. I slipped into what I thought was a deep depression. I had suicidal thoughts - I felt that if I couldn’t have a child, what was the point? I dreamt about dying alone (which is ridiculous, because we all die alone) and feeling like I hated my body (my poor body, that was working so hard for what I wanted). But my doctor actually told me it was grief - grief for my lost embryo, my babies that died, and for my missed chance of having a child. It helped me conceptualise and rationalise that what I was feeling was normal. There is a cycle of grief: shock, pain, anger, depression, reconstruction - and, finally, acceptance.
7) IVF tests even the strongest relationships
IVF tests a relationship like nothing else. It can uncover feelings of resentment, anger, frustration and it can quickly disconnect couples who cope with their emotions in different ways. However, I only really understood what love was going through IVF - somehow, our relationship kept going. United in grief. If you can make it through IVF and see the other side, whatever the outcome, you will be stronger for it. It is still hard, though - despite the emotional connection and reaching depths I never realised existed; we haven’t had sex in over a year - there is still so much work to be done.
8) You learn who your friends are
I have heard it all: “Happy childless day”; “just try naturally (um, no - my partner has no f’ing sperm”), “you need to stop, it is ruining your body”; “can’t you talk about something else?” I have lost so many friends, mainly due to a dangerous combination of my vulnerability and their insensitivity. I have never felt so alone. I was too mentally distraught to cope with my friends who had just given birth - I left WhatsApp groups, I stopped responding to baby photos. I would hide in the toilets when my colleagues would bring around their newborns. I would have a panic attack when I saw yet another pregnancy announcement. I felt so ashamed and guilty that I couldn’t be a better person, a better friend. However, I had to protect my mental health, and those friends that are real and true will be patient. I learned that you can be happy for someone else, whilst feeling so much pain for yourself - and it does not make you a bad person. Do what you need to do. Real friends understand and will be patient.
9) IVF buddies: a piece of advice
No one understands you better than an IVF buddy, because no one can understand this journey unless you have been through it. It has been incredibly comforting to have an IVF buddy and you build an instant connection and closeness. However, one word of warning: if one of you gets pregnant, and the other doesn’t, it can make you feel even more of a “failure” (ps. I hate that word, but it is how I felt). I had never felt more alone when my IVF buddy, the woman who understood my pain more than anyone, got pregnant naturally whilst I was miscarrying. It is very important to remember you are on your own journey, and comparing yourself to others (even if in a similar position), is a dangerous spiral. My beautiful new IVF buddy coped much better than me - I gave her hope, but each person has their own emotion and reaction, which is ok.
10) IVF is an art, not a science
Statistically, yes, you have a higher rate of live birth with PGS (certainly at the clinic I went to). However, I still had a missed miscarriage at 9 weeks and a chemical pregnancy with two PGS embryos. I couldn’t believe it - so the problem must be me then?! No. PGS is never silver bullet, it is a huge amount of cash, and probably only recommended if you have a large number of embryos. I was very sceptical about immune treatment, but I tried it anyway. I tried IVIG - a very expensive drip for immunes. It didn’t work and ended in a chemical pregnancy. After so many failed cycles, I begged my doctor to put me on 25mg of steroids when their clinical policy during covid was to stop all steriods. He finally obliged, because he knew how desperate I was. It worked, but I still question - was it the steroids? Or just the right embryo at the right time? It is important to remember that IVF is an art, not a science. I do believe it is worth trying various treatments as each person responds so differently, but it is worth remembering that many factors are at play.
11) Financial pressure is real
If I wrote down how much money I spent on IVF, I might throw my laptop across the room. As if we aren’t dealing with enough, we have to lose our entire life savings too?! Why do we have to pay for a medical condition we did not choose to have?! It is bitterly unfair and I recognise I have been fortunate enough to go private for a few cycles. All I can say is that thinking about the money will make it worse. Have a budget, agreed on it and then let it go and don’t think about it again. Get with a package deal if you can (perhaps Access Fertilty), so you can take the stress out of the financial situation.
12) BFP: The anxiety doesn’t stop
I assumed once I got a positive test, I would be the happiest woman alive. Wrong. Years of IVF and miscarriages have their consequences - I was petrified, crippled with anxiety. At each scan, my heart would be in my mouth. I had nightmares that I was covered in blood. Some days, I couldn’t breathe, I had convinced myself I was carrying around a dead baby. Every woman deserves to have a magical and positive pregnancy experience (I didn’t, I lived in fear) so it is important to get support to manage anxiety levels and get as much support as you can. Even after the birth, I still suffer panic attacks - traumatised by the whole process. Your feelings are valid - you have been conditioned to think this won’t work and your expectation of what motherhood should be tends to be unrealistically high, so be kind to yourself.
13) Redefine what ‘family’ means
Over the years, I have thought a lot about the definition of ‘family.’ We each have our own experience of what family means, but it is often important to broaden our minds and recognise that many modern families can take many forms. Before I entered this journey, I had quite traditional notions of what a parent is and I couldn’t begin to accept the idea of an egg or sperm donor or a life without a child. Then I did. I recognised that donation is the greatest, most beautiful gift. What more could a child want than love, trust, honesty, nourishment and a stable home?
I also recognised that a family also does not have to be defined by children - my partner and I are a family of two. Even as a single woman, I was a family of four with my closest friends and parents. Beloved pets can be your family. It does not take away from the desire to have a child, but every relationship in life is precious and valuable, and it can also be your very own family. When we want a child so much, we create unrealistic expectations of what that 'perfect' life will be like - it is worth remembering that many couples do not survive after a child is born because of the intensity and pressure. It is hard - unlike what you might see on Instagram, but many women feel they cannot converse honestly about it. Children do not create a family - you do. It is 'you' that defines who your family is in your life.
14) Whilst trying to create a life, don’t forget your own.
Clomid - is this free on NHS? As can't get funded for IVF! 
Failed IVF - What next?
Day 1 of our IVF journey- fiiiiiinally!! 
