My Fertility Story…

To mark the end of Fertility Week 2023, I have decided that it’s time to share our story.

I feel like the clock is ticking and I can hear it ever louder in my mind each day. It feels like I’m watching each grain of sand slip through an hour glass as it piles up at the bottom. In my mind I reach out and try to grab the sand to stop it, but it just slips through my fingers despite all my efforts.

You can’t stop the passing of time. I’m just over 3 months away from my 34^th birthday, and I still don’t have a child, the beginning of November marks 11 years since my husband and I started trying to have a family. 11 years…let that sink in.

‘But you’re still young!’ I hear you cry. Yeah, yeah I am, I don’t feel old (maybe a little creakier in my joints but I’ll get over that). But 35 years old is the cut-off point for IVF on the NHS in most (if not all) areas of the UK. Despite the NICE (National Institute for Health and Care Excellence) recommendations stating that women under the age of 43 who have been trying to get pregnant naturally for 2 years should be offered IVF on the NHS. But it doesn’t appear that any areas in the UK seem to follow this guidance.

The short of the story is my husband and I need IVF to be able to have a chance of having a baby. The likelihood of it ever happening naturally is incredibly low.

To fill in the gaps that the above paragraph leaves you wondering about, below is my story of infertility…

At the moment, my BMI is still above what they will accept to start IVF treatment on the NHS, once I’ve reached the ‘acceptable’ BMI, we’ll likely need referring to the correct specialist and to undergo a variety of tests before we are able to apply for IVF funding on the NHS. This application for funding can take several weeks (around 5-6 from what I’ve read) and the actual wait for the IVF process itself can take at its shortest about 4 months, but can be so much longer than that. So you might be able to see why I feel like time is slowly ebbing away?

In the time my husband and I have been trying to conceive, I’ve watched the people I know around me have 1, 2 even 3 children and I’ve watched them grow up, some of them are not far off being teenagers now. I’m always happy when someone announces a pregnancy or a birth, I always smile and congratulate them and it’s always meant with a 100% sincerity. I love children, I love babies and I love to see people happy. I wouldn’t wish infertility on anyone, it’s a living hell and that is no over statement.

Maybe at the beginning of this journey there was an element of the green eyed monster, there was a little jealousy towards those able to have children without any issues. But that’s long gone now. And when that moment of congratulations and showing how happy I am for the pregnant women or the new parents passes, the thought ‘but why not me too?’ creeps in instead. The sadness, the emptiness and the longing to be a mother myself hits me like a ton of bricks. Sometimes I can be strong and get on with it, other times I have to take a moment and I cry, I’m not ashamed to admit that.

I hear people talking about ‘planning’ to have a baby, when they might start trying and what sort of time of year or point in their life might suit them to try and conceive, often it’s a discussion around a second or third child. I listen with genuine curiosity and think ‘if only it were that easy for us’. Please don’t think that is thought with any sarcasm or nastiness, anyone that knows me, knows I’m not that kind of person. The point is, I really do wish it was that easy for everyone, for my husband and I and every person and couple whose infertility journeys I’ve had an insight in over the last 11 years.

Personally, I never want people to stop having discussions like the above in front of me, please, please talk about it, talk about your pregnancy and birth stories and your babies and children with me and in front of me. For me it means I don’t feel left out, I don’t feel like I’m on the outside looking in. I’m lucky (in my eyes) that most of the people around me will discuss these things with me and carefully make me feel a part of things. I like that, but I know for many women struggling with infertility, that just isn’t the case and I get that too.

I was diagnosed with PCOS (Polycystic Ovary Syndrome) in my early 20’s. Unusually, I had an incredibly supportive GP at the time, who when I went to him and said “I know something isn’t right” immediately referred me for all the necessary tests.

I was pretty late in starting my periods (almost 15), especially considering when puberty had started for me, and my first period lasted in excess of 6 weeks. As an active teenager, obsessed with football, developing boobs and the resulting need for a bra was hellish enough, so at the time my period starting so late in my teens was a blessing. The 6+ weeks of bleeding when they did eventually start though, was anything but! I was put on the pill by one of the doctors at the surgery in the effort to control or stop the bleeding, which worked, eventually. But my periods were always irregular, usually incredibly heavy initially at least and ridiculously painful. Which is why I knew something wasn’t right, I literally said to my GP “I’m pretty sure I’ve got PCOS.” His reply was, “Yes I think you probably have.” And the tests confirmed it.

Polycystic ovary syndrome is where a person’s ovaries produce an abnormal amount of androgens (which are usually only present in women in small amounts.) Polycystic ovary syndrome is used to describe the many small cysts that tend to form in the ovaries, although it’s important to mention that not all women with PCOS will develop these cysts. Some of us with PCOS don’t make enough of the necessary hormones needed to ovulate, hence why the cysts can occur. These cysts then produce the androgens which can affect your menstrual cycle and cause many of the symptoms of PCOS which include; missed, irregular or very light periods, ovaries that are large or have many cysts, excessive body hair including the chest, stomach and back (known as hirsutism), weight gain (especially around the belly), acne and/or oily skin, male-pattern baldness or thinning hair, infertility, skin tags, dark or thick skin patches on the back of the neck, in the armpits and under the breasts.

The majority of people with PCOS also suffer from insulin resistance. Normally, the hormone insulin will rise briefly after you eat, it will stimulate the liver and muscles to take up sugar from your blood and it should convert this into energy. Which will then cause blood sugar to fall and the insulin levels will then do the same. When insulin sensitivity is normal, both sugar and insulin levels will be normal when a fasting blood test is done. When you have this blood test and suffer from insulin resistance, your blood sugar may show as normal but your insulin levels can be high. This is because the pancreas has to make more and more insulin to try to get its message through. When the body creates too much insulin it generates inflammation and causes weight gain. This can lead to type 2 diabetes and heart disease.

Not once have I ever, EVER had a medical professional of any variety explain to me what PCOS is, despite being diagnosed with it. No one has ever explained the symptoms or implications of having it to me and back when I was diagnosed, the information for me to discover myself was far more limited than it is now. Despite numerous blood tests to test if I’m ovulating or not, no one has ever given me a definitive answer as to whether or not I’ve ovulated on those cycles. I have never been given any medical support for my PCOS other than a short course of Clomid prescribed by my GP (a drug that can stimulate egg production) which was entirely useless considering our other infertility factors which I will explain later. In short, I’ve had zero support for my PCOS and gaining an understanding to the level of which I have now has taken me the last 11 years of studying, reading and researching AND finally paying out of my own pocket for support (again something I will go into later). Sadly, I think I’m just one of many in this situation.

It was such a long time ago now, that it’s pretty hard to remember the order that everything happened but I do know that despite it being only around 9months after us starting to try and conceive, our GP referred us for fertility testing. (Normally, a GP won’t refer you until a year after you’ve been trying to conceive.) I knew I had PCOS already, but I was referred for a Hysterosalpingogram (or HSG for short), to check if my fallopian tubes were blocked and my husband had blood tests and had to produce a semen sample.

Fortunately my HSG showed everything was all ok and there were no blockages. But I don’t think we were by any means expecting the outcome we had with my husband’s results.

Firstly, we discovered that he had ‘Oligospermia’, which in simple terms is a low sperm count, a sperm count below 15 million sperm per 1 millilitre of semen, which would be a typical amount in a man. Unfortunately his was very low, as was his sperm motility (which is the ability of the sperm to move efficiently) and sperm morphology (the size and shape of sperm).

I don’t know why, perhaps we shouldn’t have been so naive, but like I say, we just weren’t expecting those results. Maybe we thought as I already had issues effecting my fertility, that it simply couldn’t get any worse, why would he have problems too? And his second test ordered as a follow up to the first a few months later, was even worse. I remember the day he received the results of that second test, we were almost 2 years into our trying to conceive journey. We stood in our lounge and we both cried as we hugged each other. He said that he felt ‘less of a man’, because the one thing men were almost certainly expected to do (help create a child) he was unable to do. I will never claim to know exactly how he felt but as a woman, I had never expected to have my ability to naturally conceive a child taken away from me with my fertility issues. I had already spent agonising times berating myself and my stupid body for not being able to do what it was created for. So in that moment I hugged him a little tighter and cried a little harder along with him, and to me, he had never seemed more of a man, for being able to admit his true feelings and tell me exactly how it was for him and most importantly for being able to cry rather than keep all that hurt and disappointment inside.

Following that we were told we would require ICSI IVF to be able to have a chance of conceiving. Intracytoplasmic Sperm Injection or ICSI, is an IVF technique where a single sperm is injected directly into the centre of an egg. Without ICSI the sperm is left to naturally penetrate the egg within a laboratory dish. However, ICSI is usually the chosen process when the sperm is unlikely to fertilise the egg naturally, such as in cases where the sperm count is very low, it can’t move properly or the sperm has a high rate of abnormalities. Hence we were told we’d require ICSI.

At the time, the fertility specialist literally told us we weren’t eligible for IVF due to my weight and to go away, for me to lose the necessary weight and get referred back when my BMI was below 30. No help, support or understanding of our situation was offered, there were no further investigations behind the reasons for my husband’s fertility issues, nothing.

It felt so isolating to be thrown back out into the world on our own, knowing we had these fertility problems but with no real knowledge of what they were. We had no one to reach out to or anyone that had been through similar issues that we could talk things over with. We were totally on our own and I felt a huge amount of pressure, it was all on me to lose weight.

I was once a quite a small little girl up until I was about 7 years old and then I gained weight. I know that I went through some difficult times and developed OCD (Obsessive Compulsive Disorder) at around the age of eight and I remember that even back then something sweet felt like it made everything all better (at least temporarily) and I guess that’s probably where my slightly negative relationship with food started. But I joined a girls football team just before I turned 10 and whilst I was never super slim, it did really help keep me at a slightly lower more consistent weight and by my mid-teens I was training hard and taking my fitness really seriously.

I had a brief period of studying football at college alongside what I was already doing with my football club, I’d be training 4 or 5 times a week, have two matches a week and be in the gym at least 3 times a week. I loved it, but I noticed something was really wrong with my knees and hips, I saw a variety of specialists and had lots of scans which showed various issues that had been exacerbated by running and training on concrete every winter. I was also a few years in to having developed some pretty awful mental health issues, really severe depression and worsening OCD, which I didn’t share with anyone. This had a huge impact on my social skills and how I acted towards people, I pushed my friends in the team away to an extent and things happened that I still don’t understand to this day entirely. I left the team when I was 17 and despite joining another, my head was never in it, my body and mind hurt too much and as soon as my activity level dropped by the time I was around 19 years old the weight started to go on which only made things worse for my physical injuries and my self-esteem. Stopping playing football was the worst thing I could have ever done for both my physical and mental health and what led to my persistent struggle with my weight.

In my early 20’s my struggle with depression only worsened and much like our struggle with our infertility journey, the support just wasn’t there. I ate for comfort and the weight gain got worse. I am NOT ashamed to admit any of this, it’s my story, and it’s shaped who I am now, I went through an awful lot and my struggles are real. Some people might think when I was told to lose weight to be eligible for IVF that it would be the only kick up the a*se I would need, so why haven’t we already been down the route of IVF?

Simply put, I guess I was in a perpetual cycle of misery at the time, blaming myself for my inability to have a child, my inability to not feel depressed and the more I berated myself the longer this cycle went on. And when I did try to exercise and lose weight I’d lose some but be confused as to why my constant efforts never came to much. I just didn’t know back then how much my PCOS had a bearing on my ability to lose weight like other people without PCOS. I joined things like Slimming World, but little did I know that ‘free foods’ on the diet that you’re actively encouraged to fill yourself up with like pasta, rice and potatoes are so counterproductive when you have PCOS and are basically going to make things worse. I’d desperately persist but to no avail.

It wasn’t until 2018 (when I was 28 years old) that I finally had a break through. I worked so so hard to get the weight off, it was exhausting and I was barely eating at this point because I was at a loss as to why weight loss attempts in the past just hadn’t worked but I was getting there, slowly but surely. I think I had just under a stone left to lose at this point, before my BMI would be under 30. We went on holiday in the September of 2018 to Turkey and for the first time in probably my whole life, I finally felt more confident in my body. I had been really self-conscious as a teen despite being a lot slimmer and fitter, I didn’t see myself that way and only really judged myself as being ‘fat’…I really wasn’t. We had a great time in Turkey and it felt like the boost I really needed to get the last of the weight off, I really did feel amazing.

When we returned home after a fortnight away, we were served a section 21 notice from our landlord. We were being evicted for no real reason and the landlord was legally allowed to do it. I know now that it is what they class as a ‘revenge eviction’,  we had asked for some work to be done on the property to make it safer, the garden path was disintegrating and I’d turned my ankle over on it, the back door was leaking every time it rained and our bedroom window was stuck shut. Just some simple fixes that the landlord didn’t want to spend money on. We were fortunate that we had started looking for a house to buy and we were a reasonable way down the road towards this, but we couldn’t get out in 4 weeks, which is the amount of time the section 21 notice gave us. Not only was that obviously the home we lived in but I was also a self-employed childminder at the time, without the house, I had nowhere to childmind from, several families that would mean letting down and no way of earning money. My depression and stress spiralled again, the landlord was unreasonable, unkind and generally unpleasant about the whole situation and it was something I really struggled to cope with, as did my husband. With me, with stress comes emotional eating, resulting in weight gain, all my hard word undone and several steps away from our goal of IVF again. Naturally a cycle of berating myself and more emotional eating began.

Eventually we got sorted at our new house, despite outstaying our welcome in the rented house, we had no choice in that and it was something we negotiated with the landlord in the end. However, he then put us through hell to get our deposit back, in fact he tried to claim for extra money. Considering we kept that house immaculate and hired a weekly cleaner at the height of my childminding when things were too busy for us to do it ourselves. Fortunately the deposit holding company were pretty good and ended up supporting us, returning the large majority of our deposit (leaving the landlord with a little to enable him to weed the allotment part of the garden that we hadn’t got round to in the monsoon type weather we were experiencing that November!)

But to be honest I don’t feel I ever truly settled back down into feeling like I could ‘live’ even in a house of our own, we came up against problem after problem, stress after stress. I never felt relaxed or calm and when Covid hit, it only caused more problems. At one point all childcare providers were pretty much forced to close, we were told shortly after that we could accept children of key workers, but I was in an ‘at risk’ category due to my health and quite frankly at the time, entirely terrified of the consequences to my health if I was to open to the children of key workers, so I remained closed. Not working was a stress in itself, my husband was working six nights a week, and they were hard for him, ten times as busy as normal. It meant, due to his sleeping pattern, that I was pretty much on my own all the time, much like many other people during the lockdowns. Not to mention the financial impact it had on us, again I know we were far from alone there.

We made the joint decision of going into fostering for a short while, it seemed like a really good choice for us at the time. The life experience we’d had in many areas meant we had a lot to give. We were approved and fostered a child for a few months, but thanks to a less than helpful fostering agency, we made the utterly heart-breaking decision that we couldn’t continue. It was yet another thing that gave my resilience a huge knock. I felt like such a failure.

Eventually I went back to childminding, but I made the decision to take on fewer children and only do it part time. It was the best decision I could have made, I was able to fully focus on each child as an individual and give more time to myself away from work as well. At that time I took on some wonderful families who I owe a lot to. My values and ethics within my childcare approach had morphed into something I was entirely passionate about and that the parents seemingly loved. I have always been so honoured as a childminder to be trusted with parent’s children, that trust is such a huge, all-encompassing thing. And whilst I was still struggling hugely with our infertility journey, the children in my care, made me feel like I had a real purpose to my life. I know that I was hugely important to them, it’s hard to leave your Mum or Dad each morning, especially at first, and especially when you’re so little. And it takes a strong and important bond between a child and their other care provider for it to truly work, but I believe it did, I believe it worked really well for everyone involved. But I won’t lie, the emptiness in my heart set in every time I closed the door behind the last child to leave each day. The house was quiet in a way that I despised and no one really needed me anymore, until the next morning or the next week when my little mindees returned.

But we couldn’t ignore the mounting debt we had due to Covid and the fostering, we’d had to make adjustments to our house to be approved, which we really couldn’t afford but naively at the time believed we could pay it all back. I worked two jobs (the minding and waitressing), my husband worked constantly. But we just couldn’t make the money stretch. Our fight towards being eligible for IVF and trying to have that hugely wanted, NEEDED, baby was on long term hold, because of a few ill informed decisions and it seemed like life was working against us. We really had to do something. In the end our only real choice was to sell the house, we had equity as well as money invested in it that we would have to use to clear our debts. Although it wasn’t really a choice but more a necessity.

We knew at this point that we desperately needed to focus on what we wanted and needed the most in life, and that was to do our upmost to try and have a baby.

I don’t know if I can really put into words what it does to you emotionally nearly 11 years into trying for a baby, with absolutely nothing to show for it, other than a stack of tatty paperwork that explains in long winded medical terms that are hard to decipher, why you can’t naturally conceive a child. But I can tell you that it hugely messes with your mind, your sanity and your relationship with your partner. It makes you doubt everything about yourself and sadly it makes you angry at the world at times.

If you were to ask my husband, he’d tell you I was born to be a mother. No one really taught me to love or nurture small children, but I was hugely involved in the early life of 4 out of 5 of my nieces and nephew, I was 8 when the first was born. And when my nephew was born when I was 10 my brother’s partner and the baby lived with us part time, I couldn’t wait for a Saturday or Sunday morning where I’d knock on their bedroom door and ask if I could take my nephew downstairs to give him breakfast and play with him. I used to listen out for when he’d wake up, I loved it and his Mum and Dad appreciated the lie in too I reckon! When I was 18, I went straight into nursery work and when I was 25 I started childminding.

No one ever thinks at 18 that they might not be able to follow the natural path they predicted for themselves, mine was pretty traditional now looking back on it, fall in love, get married, and have kids. Obviously, I’m still waiting on the last bit, but despite that little plan being far more traditional than the way I generally live the rest of my life, I’m glad I made the decisions that I did, when I did. Although falling in love really isn’t a decision! But hopefully you understand what I mean.

I know of many women who haven’t been able to continue their careers in childcare or even consider working with children because of their struggles with infertility. It would be just too raw for them to work with children that they have to give back at the end of each day. I won’t pretend it wasn’t hard, like I mentioned previously but it gave me the strength to keep going, it reminded me each day why I was still here and why I hadn’t entirely given up, despite my depression and despite our struggle to conceive.

The only real reason why I’m no longer childminding is because I realised what a huge upheaval my life needed. I knew there were many things that had happened in my life that I needed to work through and heal from and I’d begun to learn more about the impact my PCOS was having on my everyday life and why I struggled to lose weight. So when we sold our house, we made the huge decision to buy a van to travel around the UK in, to give ourselves the time and focus to work out how to fix the things that had gone wrong and what I needed to change, to feel and be healthier, both in body and mind.

However, at the moment the travelling hasn’t been as consistent as we’d have liked. Initially some family matters meant we needed to stay in our home town. But then I started experiencing quite severe pain around my ovaries, specifically my left one, so I contacted my GP surgery. I think we all know the reality of the wait time nowadays, specifically post Covid, when it comes to getting a GP appointment. So I had to wait quite some time to actually see the doctor, who was the first one since my original GP (now retired) who seemed to not only be concerned regarding my pain, but really care about the fact we are nearly 11 years through this and are no further along in actually be eligible for IVF, largely due to lack of support with my PCOS and helping me with how to lose weight. She referred me for scans, concerned that the pain could be due to follicles on my ovaries bursting and ordered blood tests to look into things further. Now whilst I know all my results are back, I can’t have them explained to me until my appointment with the doctor, which by the time I actually get to see her will have been about 3-4 weeks since I actually booked it. It’s frustrating, because I want to be able to discuss the results and the next steps, as well as the fact the longer I wait between the appointments, the longer our travels are put on hold. But it’s also worrying, although whilst I don’t believe any of my results reveal anything serious, naturally my mind can’t help but worry about what they might divulge.

I mentioned above that I had started beginning to gain an understanding of how my PCOS was effecting my health overall as well as my ability to consistently lose weight and keep it off. I had found that more information was becoming available on the internet, so I started doing my research, reading up on things and looking into a PCOS friendly diet. Because my body is resistant to insulin, the hormone that helps convert sugars and starches from foods into energy, as I explained previously, the pancreas just makes more of it, which just promotes fat storage and can increase hunger. Hence, not losing weight on regular ‘diets’. But when I tried to research what I should be eating to avoid this happening, it’s like a minefield on the internet! No one can seem to quite agree, should you eat dairy or not? Should you go gluten free or not? Is soy bad for you if you have PCOS? And as a pescatarian, it seemed ten times harder to find suitable recipes. So I was at a loss in all honesty and until now changing my diet has been put on the back burner whilst I was still juggling work and trying to get the house sold.

However, now I have finally been able to afford to consult a nutritionist, one that specialises in the understanding of PCOS and actually suffers from it herself. Even only one appointment in, it has been a huge eye opener and so incredibly helpful. She has helped debunk some of the PCOS myths out there already and helped me to start thinking about the other things that have become a complete muddle in my life such as my sleep pattern. I had already started making some changes to my diet but now with her guidance I feel like I have much more of an understanding of which foods and how much of them work for my body rather than against it. I truly believe that without having this guidance from a nutritionist that we decided to pay for, we would just be stuck in a perpetual cycle of me trying to lose weight and not succeeding. So this was the only and the best choice to be able to move forward, but it frustrates me that all this information isn’t more readily available to everyone in our position. I have already started making some positive progress with my weight loss, 8lbs lost in about 3 weeks. I’ve had to really think about what I eat, how I cook it, how much of it I eat, in ways that are really quite different to how you might manage things when on general diets or controlling your calories. But, I still have a lot to learn and this isn’t just a fad diet, this is a necessary lifestyle change to help keep myself healthy in the long run, it’s not all about weight loss.

I struggle, I have days where I question all that has been thrown at me and I cannot pretend to just be ok. Sometimes things wear you down and over a decade of struggles with infertility is one of those things. I wonder to myself ‘why me?’ out of the billions of women in the world, why me? Why the other women who I have come to know of struggling with infertility too, why is it us that can’t have a baby like the others we see around us? I question if I can really cope with a life in which we’ve exhausted all of our options of trying to have a child and where I have to be childless, not out of choice. I wonder what that kind of life really holds for me, when all I have ever wanted was to be a Mum and I can’t see a life that I am truly happy with without having a child.

A few years ago I was looking through some copies of old letters that my parents send out to all their friends each year in their Christmas cards. I found one from the early 90’s when I was 2 years old, almost 3, where my Mum was writing about how much I loved my dolls and would treat them like real babies and that one day I had pointed to a real baby on the TV and said “can I have one of those?” Perhaps even back then I felt that being a Mother is what my future held, maybe that sounds a bit silly but I can’t remember a time where I was growing up that I ever thought I’d be anything but.

It seems quite poignant at the moment to bring up my favourite and most hard hitting scene from Friends, as it featured Matthew Perry as the character Chandler, who sadly recently passed away. It features him talking to the pregnant birth mother of what will later be his and Monica’s adoptive child (well children, as it turns out she has twins.) They messed up a bit as it seems their profile was muddled with another prospective adoptive couple’s who were in fact a Reverend and a doctor, confused as to what to do they went along with it, only to be later found out by the birth mother who as a consequence of their lie, no longer wanted them to adopt her baby. Only for her decision to be reversed by a really emotional speech from Chandler. It features a line that has always stuck with me because it reminds of how I feel and what my husband says about me…

“I really want a kid, and when that day finally comes, I’ll learn how to be a Dad. But my wife, she’s already there, she’s a mother without a baby.”

And like I said, whilst I battle with the emotions that infertility brings, the emptiness it leaves in my heart and my arms, I have worn a necklace for many years now with the Latin words ‘dum spiro spero’ on it which means ‘while I breath, I hope’. And I do have hope, I will always have hope that one day I will be holding that baby we have dreamed of and fought for, for so long. We’ve not given up and if one day we have to, I have the hope that we can be at peace with the fact that we truly tried everything to become parents.