Where Did It All Go Wrong?: A Secondary Infertility Diagnosis

Observant readers of this blog may have noticed that I’ve rarely, if ever, used the words “infertile” or “infertility” up to this point. I’ve preferred to refer instead to”difficulty conceiving”. Since we conceived the first one without any difficulty at all, it seemed natural to assume that “difficulty” was all we were having. It seemed unthinkable that things could change that dramatically. However, it appears that not only is it entirely possible to become almost completely infertile in the three years after conceiving one child, but that it has also happened to us.

I don’t particularly want to discuss specifics here, because they relate to us personally and have little relevance to anyone else. Suffice it to say, however, that even my husband, who has no interest in, and little understanding of, medical matters, it’s fairly clear from our results that our chances of conceiving and carrying a baby on our own are extremely tiny.

In a way, this is a massive positive. It seems that IVF does have a reasonably good prognosis and to be honest, I’m happy about the definite-ness of the fact that this is what we need to do. Like, I suppose, many people struggling to conceive, I was dreading getting no answers. Being told just to be more patient and “keep trying”. I was worried that I’d be forced in to making a decision to undertake expensive fertility treatment just to satisfy my own impatience all whilst wondering whether it was truly necessary.

Now, I know exactly what we need to do.

And do it we will. Obviously and rightly we won’t qualify for any treatment on the NHS, so it seems that rainy day that we’ve been saving for has arrived, because I can’t put a price on having another child. Even the unobservant blog readers amongst you have probably picked that one up by now! I feel fortunate that we have the money available to do this and give it our very best shot.

I’m daunted, too. Naturally. I’ve just begun dipping my toe in the waters of infertility forums online and I’m overwhelmed by things I don’t yet understand, and by the many ways this could end up going. Surely no one would choose assisted reproduction if they had a true choice. It isn’t where I want to be, but I know that it is where I have to go.

Something – call it women’s intuition if you want – has been telling me for over six months that something wasn’t right. And so it turns out I was correct to have so many concenrs about our fertility. Even so, I’m still confused about just exactly where it all went so wrong in such a short space of time. But whilst we have answers for why we can’t conceive now, we don’t know exactly how we managed it before. Perhaps we had the same problems back then too. We will probably never know, but I can admit to having hugged my son just a little bit tighter when we arrived home from our appointment.

Never mind IVF, perhaps he, too, is a miracle baby.

The Stages of Trying (and Failing) to Conceive

The title of this post gave me some difficulty. It turns out that I’m still somewhat hesitant to use the word “infertility”. It’s not simply about wanting to deny the situation that we’re in, or that the definition fits. It’s more about a fear that by applying that word to our current situation I might somehow be belittling those whose situations are far more complex, more difficult and have gone on for much longer. I’m very definitely a newbie at this.

That said, I’ve already learned a awful lot about struggling to conceive. And I can already identify several distinct phases in the trying-and-failing-to-conceive journey. So here’s my round up of the six stages that those of us in for the long haul seem to pass through on our journey to conceiving a child. (And here’s hoping that anyone reading this never gets beyond stage 1 or 2 before they see that second pink line!)

 

Impatience

It starts with impatience, almost universally. You make the decision to start trying for a baby and it’s pretty natural that you want it to happen straight away. So you start off by wondering how long this is going to take and wishing the weeks away. This is the stage in which you happily pee on a stick a couple of days before your period is even due and watch the test with a rising sense of excitement. Because although you’re impatient, you’re also expectant. We all know people have trouble conceiving, but yet often manage to convince ourselves that it won’t happen to us and we’ll soon get the longed for positive. After all, we also know plenty of people who got pregnant on their honeymoon, and we’ve all attended secondary school sex-ed classes that taught us the “dangers” of “un-protected” sex.

 

Frustration

So, when it doesn’t happen after the first few months, the frustration creeps in. We’re doing everything right, tracking ovulation, plenty of sex so why hasn’t it happened yet? This is also the point at which all the stops are pulled out. You find yourself researching supplements and scouring eBay for the best deals on bulk buys of ovulation predictor kits, cross that you need to buy them at all because you definitely should be pregnant by now.

 

Optimism

But that gives way to optimism, when you realise that you’ve been at this for several months and so probability dictates that you must be getting closer to success. “This month” is definitely going to be “the month”. After all, statistics suggest that around 60% of couples will be pregnant after six months of trying.

 

Disbelief

Of course, that leaves 40% of us still waiting, but, given that you’re doing everything right, it’s pretty hard to believe that you’re not in the other 60%. In fact, it becomes pretty hard to believe a lot when you’ve been trying for nine months or more. It’s hard to believe that the egg you’re certain you’re releasing (after peeing on so many sticks that catching your wee in a cup is now a conditioned reflex) is not getting fertilised by the plentiful supply of sperm that you (or your partner, to be more specific) are providing. How is it possible that so much “unprotected” sex can result in nothing when high school biology, and the problem pages of teenage magazines, would have you believe the briefest of fumbles behind the bike sheds would get you up the duff?

 

Anger

After disbelief comes anger, jealousy, bitterness and the “it’s not fair” syndrome. All the negative and slightly destructive emotions come tumbling in one after another. It’s hard to maintain sight of the fact that this is actually quite common when you are surrounded by pregnancies, some unplanned, others achieved lightening fast. It’s hard not be at least a little bit jealous when other people have something you desire so strongly and have worked so hard to get but without success. It’s natural to question why this is happening to you, and to feel it’s not particularly fair. It’s all too easy to forget that you never really know any body else’s story, or how hard their road to pregnancy really was.

 

Resignation

When the anger burns out, you land somewhere between depression and resignation, depending partly on your character and personality, and partly on the particular day. It’s hard to turn practical to solve the problem, because that is what all the charting, testing and frequent bedroom antics have been about. Once you start down the road of fertility investigations, it feels, in many ways, even more out of your control. The desperate longing for a baby doesn’t go away, but it becomes equally balanced by the fear and belief that it won’t ever happen forcing you in to an odd neutrality and an awkward acceptance of the situation. Well, on a good day at least.

 

Which is exactly where I found myself just prior to receiving a definitive verdict on our situation. Funnily enough, that diagnosis has sent me right back to square one. We have the answers now, and so I want to get on and do something about it. I’m impatient to start down the assisted conception road that we now know we need to take, and I’m cursing Christmas, and the popularity of our chosen fertility clinic, for slowing things down. I’m back to anxiously counting out the days of my cycle, working out when we might actually be able to start the treatment we need.

I can foresee that the stages above could easily transform in to the “Six Stages of Fertility Treatment”, but right now I’m bypassing frustration and heading straight to optimism – optimism that we won’t get as far as disbelief, anger or resignation in the IVF process.

Here’s hoping.

Onward! To 2014, Year Of…?

It’s funny, looking back at the last few years of our lives, they each contained a pretty defining event. 2010 was the year of our marriage and the year we moved out of London to set up a more family-friendly home. 2011 was the year of pregnancy. I fell pregnant in the February and spent the year growing progressively more rotund until Thomas was born in the November. 2012, then, was the year of parenting. It was the year where our primary focus was our son and we found our feet with looking after him and helping him grow. I won’t say we learned what we were doing, because I don’t think anyone ever does. But we certainly gained some confidence and had a lot of fun alongside the tough times.

2013 lacks any such milestone. I had hoped it would be a second year of pregnancy, hopefully with another newborn towards its end and it would go down as the year when three became four. Instead it has become the year of trying, and failing, to conceive. The year of discovering our infertility and the only options open to us to grow our family.

Now, as 2014 starts, so does my first cycle of IVF.

It’s exciting and terrifying in equal measure. I can’t let go of the hope that this will go smoothly, that it will work and that I’ll once again spend the bulk of the calendar year pregnant, welcoming a sibling for Thomas before it’s over. I hope that it doesn’t become simply “The Year of IVF”, with repeated IVF cycles resulting in nothing more than a hefty dent in our savings. And I hope it does not become the year in which I say goodbye to the dream of more than one child.

Yet realistically, I know that it might.

It isn’t my favoured outcome, of course, but I’ve finally reached a sort of peace with this, and that what will be will be. I am, and will always remain endlessly grateful for the happy, healthy son that I have and all of the joy that he brings to our lives. I realise the multitude of more difficult and awful circumstances we could be facing right now. I have begun to see the many positives that could come from a life with just one child. But despite this, and despite the fact that I’m not usually one to wish my life away, if I could fast forward for even just a few moments to New Year’s Day 2015, I’d love a sneak preview of how all this might turn out. Because by this time next year, we’ll know.

And only then can I truly move forward.

I feel 2014 is destined to be a year of transition.

Here is hoping that 2014 is also the year of the happy ending, not only for us, but for everyone we know.

We’re Going on a Sperm Hunt

We’re going on a sperm hunt.
We’re going to catch a big one.
What a beautiful day!
We’re not VERY scared.”

If I’d ever imagined a caricature of conception, then the egg would have been cool and mysterious, aloof even. Perhaps wearing a headscarf and sunglasses and looking more than a little disdainfully at the sperm rushing towards her, falling over one another like over enthusiastic puppies, unable to contain themselves and certainly with no lack of energy and focus to get to their goal.

It turns out in our case the egg could have been wearing a high-vis jacket and neon flashing sign and attempting to fall under the feet of the incoming sperm. For all the good it would have done. Because at some point in the last three years we went from falling pregnant with relatively little effort to a sperm count of virtually zero.

It’s a position that even has our fertility consultant a little baffled, as there is simply no logical explanation for such a dramatic change in our fortunes in the absence of an abnormal hormonal profile and any illness or trauma. Even from a lifestyle perspective, Ian is, if anything, in a better place now than he was three years ago. In fact the favoured explanation at the moment is that we were simply very, very lucky to have ever fallen pregnant before. 

It’s taken a while for me to write about this because it is obviously not just my story to tell. And whilst Ian is not silly enough to believe that a sperm count is any kind of reflection on his masculinity, or worth as a father, other people are not always so sensible. And somehow it’s still more “acceptable”, or at least expected, in this day and age for a woman to have fertility issues than for the problem to lie with the male. Of course, in reality, all fertility problems belong to a couple – there is no fault, or blame or responsibility. It may be Ian’s body which is the predominant problem, but it’s an issue for both of us as a couple. 

I want to write about it, though, because it seems that no one else is. It seems like severe oligozoospermia (low sperm count) and azoospermia (total lack of sperm) are not common causes of secondary infertility (infertility occurring after a previous successful pregnancy). I can believe it’s not that common. And I also wonder if dropping sperm counts do perhaps happen, but go unnoticed, since the only indicator is reduced fertility. If we had only wanted one child, or if Thomas had been our second instead of our first, there is a good chance we would never have known. But I also think that perhaps it doesn’t seem that common simply because no one is talking about it. I want to stand up and say that this happens.

Secondary infertility can be hard enough and lonely enough without shrouding it in further secrecy. People are fond of telling us that we have one child, of course we’ll be able to have another. We’re living proof of the existence of physiological changes that can actually render that impossible. And already having one child doesn’t make it any less painful when your heart and your arms ache for another.

Where we are very fortunate is that we live in a day and age where diagnosis and treatment are possible. Less than half a century ago we would simply have become “that couple” who longed for another child but just couldn’t have one. We’d probably have blundered on with “trying” for the next five years or more, perhaps never truly coming to terms with it. But now we have sensitive techniques for testing fertility problems. We have In Vitro Fertilisation and Intra-Cytoplasmic Sperm Injection (ICSI) techniques, which require just a single sperm for each egg collected during an IVF cycle, which is then injected directly in to the egg.

We even have surgical sperm retrieval procedures.

And that’s our golden ticket.

After discovering Ian’s very low sperm count at the end of last year, we had a consultation with a private fertility specialist. (No NHS options for us, given that we already have Thomas.) The plan was to proceed with ICSI, but to be sure we’d have plenty of sperm, especially if the first cycle failed, or we decide on a couple of years that we’d like to try for number three, we decided to freeze some sperm.

Here the real problems began. The diagnosis officially became azoospermia when all efforts yielded zero sperm.

Our only options for another child that is a full biological child to both of us and a full biological sibling to Thomas was to go in and hunt the sperm down surgically. So last Tuesday, we did just that.

Ian was scared for obvious reasons. I was scared for more subtle reasons. Because this was our last chance and finding no sperm would mean the end of the line. (We’ve already discounted donor sperm as I don’t want Thomas to have half siblings. Who knows if this decision would be different if we were trying for our first child.) Although I’ve now had more time to get used to the possibility of an only child, it’s still not my preference. I felt like everything rested on the short twenty minute sperm hunt and the skill of the consultant.

The news is good. Not brilliant, but good. He found sperm, and enough to freeze. The less good news is that we only have enough for a single IVF/ICSI cycle, which has immediately upped the pressure I feel for it to work. So if you’re reading this, I’d like to ask you to keep everything crossed for us.

I’ve said before that I’m trying to avoid asking “why us?”, when the question could just as easily be “why not us?”. 

Because yes, secondary infertility exists. Even secondary azoospermia exists. And it’s heartbreakingly hard. But no matter what happens now, at least we can’t say that we haven’t given it our very best shot.

LiveBlogging IVF – Is It Appropriate?

I’ve thought long and hard about how much of our IVF experience I want to document and share. I’ve been hesitant for reasons of personal privacy. For not wanting the pressure of everyone knowing exact dates and the expectation of an announcement of pregnancy or otherwise. I’ve been hesitant about putting it out there on the internet when not all of our friends and family even know what we are embarking upon. I’m aware too, that it’s of little interest to most of the people that read my writing, and I don’t want to become an infertility bore.

Ultimately, however, I’ve decided that I want, need, to record this process, and whatever the outcome is, so that I can look back and remember what we went through to create our second child, or remember that, yes, we really did do everything we could to make that dream a reality. I don’t really feel the weight of expectation of our pregnancy outcome. I’m long past dreaming that I could announce a pregnancy as a surprise; I’ve been talking about trying to conceive for at least a year now. I might not choose to share the outcome of the cycle immediately. That might be because I’m pregnant. It might be because I’m having a hard time processing and accepting the fact that I’m not. Either way, you’ll have to wait until I’m ready to share that information. Choosing to write this experience down in my own words does not equate to choosing to give up control of what I share. 

And I want to share it for another very important reason. I want to share this journey to add my voice to all the others who have walked this road before, and to offer information, solidarity and support to all those who will follow after me. There is surprisingly little good quality information written from the patient perspective about assisted reproduction, especially in the UK. There is even less about IVF as experienced by women with type 1 diabetes. The fact that I’ve been looking for this information suggests that there are likely to be others who are too. And I’m happy to put this down, and to share my story, however it pans out. If it can help just one other person, it will be a job well done. And if I can gain just a tiny bit of support for myself out of it, that will be fantastic too.

Because that is what is at the heart of almost all patient-perspective writing about health: Support. A small word, but a massive concept.

Who is anyone outside the arena of what is being shared to judge those of us going through it? 

I’m prompted to ask the question because it seems that there are some people who feel sharing the details of an IVF cycle online is inappropriate or undignified.

My first reaction to this is actually to feel hurt. Because that implies that it is OK for many hundreds of thousands of couples to have to live with this reality, but that we should go on doing it behind closed doors and in secret. To me, that attitude belittles how tough this journey can be. Of course there are worse things that can happen, but as I’ve said before all suffering is relative. Infertility is hard. Going through infertility treatment is a roller coaster of chance and hope, worry and fear. It may not be life or death in a traditional sense, but it the making or breaking of dreams and wishes and the outcome can change your life and the plans you may have had. In addition, the relatively short span of any given treatment cycle can make all those emotions seem enormously intense. The only people who have a hope of really knowing what this feels like are other people who have been there. And the only way to find them is to share.

Infertility my not be chronic, let alone terminal, and I’d never try to equate it to any other condition, but questioning the appropriateness of sharing the infertility experience to me is akin to questioning the ethics of sharing a cancer battle – a point I raise because it is something that has met with prominent backlash strong enough to lead to withdrawal of the article in question by Emma Gilbey Keller on the US Guardian website in recent weeks. Keller drew attention to the story of Lisa Bonchek Adams who is chronicling her battle with breast cancer very publicly across social media channels. “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” Keller asked. Tied up in this one statement is the belief that this level of sharing is rather tasteless – inappropriate and undignified perhaps? It’s not only offensive, it also completely misses the point.

If such things make YOU uncomfortable, YOU should turn away. Those of us in the thick of our stories don’t have that option.

The uproar around Emma Keller’s article relates specifically to Lisa Adams and her cancer treatment, but the issues are equally relevant to all forms of patient-perspective writing and social media usage. As Kerri Sparling puts it in her eloquent piece on the same topic “Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet. Whilst it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.”

Like Kerri, I’ve already benefited from this at first hand in the online diabetes community. And when I was diagnosed with epilepsy, online was the only place I found I could talk about it without fear of judgement. And that’s a big thing. The internet has opened up the opportunity for so many people to share things from behind the safety of a screen that they might otherwise find difficult in person. It has also helped lessen the obstacles of time and geography and given us access to the opportunity to meet far more people, so whilst our in-person networks of friends may not include anyone who has shared a similar experience, online such a person is only ever a click away. 

These are the reasons I’ve decided to be honest about our infertility journey and to share the experience. There are so many good reasons for me to do so, and very few reasons not to and as such, if it’s really a question of ethics, I feel like it would be more wrong not to be open. If it doesn’t interest you, or offends you in any way, you can skip right on by. My writing will still be here if you ever find yourself in my position in future.

A Date With the Dildo-Cam

One of the necessary evils of fertility treatment is the transvaginal ultrasound. Otherwise known as the dildo-cam. You know, an ultrasound wand shaped like a dildo that gets inserted… Well, I don’t really need to spell it out, do I?

Today was my fourth meeting with the wand-of-doom in this cycle. Taking my knickers off in front of strangers is becoming a reflex (that I need to keep in check, obviously).

The first appointment was a pre-treatment scan which brought me the news that my ovaries looked “lovely” and I had one of the neatest caesarean scars the sonographer had ever seen. I call that good news.

The second scan was my so-called “baseline” scan, carried out on the second day of my cycle to check that the lining of my uterus was sufficiently thin and that my ovaries were nice a quiet, ready to be stimulated to produce lots of eggs. The observant (females) amongst you will have noticed the first problem with this scan. The day two part. And no, there isn’t room up there for the dildo-cam and a tampon.

Yes, it’s icky.

Yes, you leave your dignity at the door when you sign up for IVF.

Ho hum.

The second problem with this scan for me was the results. Far from being “quiet” and despite a month on medication that! amongst other things, was supposed to suppress any cysts, I had a large cyst on my left ovary. This is the first time In all of the gynaecological scans I’ve had in the last 15 or so years that I’ve had a cyst on my ovaries. Talk about timing. And to add to the insult, my right ovary decided to hide behind my uterus where it couldn’t be seen.

I had two options to deal with the cyst. One involved delaying treatment, the other didn’t. Unfortunately the option which didn’t involve delaying did involve another date with the dildo-cam, a large needle and a not insignificant amount of pain.

I took that option.glutton for punishment or just really desperate to have another child? I’ll let you work that one out.

So the following day I found myself with legs in stirrups (again) whilst shaking the hand of our lovely consultant (relieved that it was him doing the procedure, because that’s an awkward way to meet someone for the first time!)

I can honestly say that having a cyst drained with no anaesthetic was one of the most acutely painful moments of my life, but fortunately it was extremely short lived. I was invited to watch the needle sliding up in to my ovary on the ultrasound screen, by way of distraction, but I had eyes screwed tight shut before it had even come in to view!

That was a week ago. Since then I’ve been shooting up like a…  well, like a diabetic, only less often, taking the drugs to stimulate my ovaries to grow lots of eggs. Today I had another date with the dildo-cam to see how I’m getting on.

And this week the news was good. The cyst hasn’t returned, both ovaries were easy to find and I’ve got almost twenty follicles, with many already of a good size. All of which means we’re on target to collect eggs next week and should get a good haul of 12-15.

I have another scan on Friday and then, all being well, my final meeting with the ultrasound wand will be in theatre as I have my eggs collected. One thing is for sure, it’s absolutely nothing like what’s involved in conceiving a baby the traditional way.

And I know which I prefer!

Another Day, Another Pregnancy Announcement

Today I heard – yet again – the news that anyone with fertility issues surely comes to dread. Another friend is pregnant.

There is no manual that tells you how to react when you hear the news. And I’ve already learned that there are as many reactions as there are pregnancy announcements. How close the person is, whether the news was foreseen, how it is delivered and what exactly the blasted hormones are doing on that day all influence the response. But I’ve also learned that no amount of practice will be able to completely erase the traces of bitter jealousy from your face. And that sooner or later, the tears will leak out.

In the last six months or so I’ve developed an irrational hatred towards strangers I see in the street with two nicely age spaced children. Or women who are pregnant with a child who is clearly younger than Thomas. I feel as though they’ve jumped the queue, that surely it should have been my turn before theirs? This kind of hatred makes me feel like I’m a nasty, slightly unhinged person, but yet I feel it doesn’t matter too much. It’s a passing expression of my sadness about our own situation, and I don’t know these people. They will never have any inkling of my thoughts, nor of their effect on me.

But when it’s people I know, the same feelings of disappointment and unfairness seem harsh and cruel. How can I, someone who knows just exactly how precious pregnancy is, feel almost resentful of other people’s good news? And especially when these people, and their happiness, is supposed to matter to me.

I suppose the bottom line is that I can’t help the instinctive reactions that I have. I can’t help the way that I feel.

And when the tears have passed, I’ve ranted about the reasons it’s not fair (often related to the fact that they didn’t even want a child yet back when we started trying, and how quickly they’ve fallen pregnant) and enough time has passed to allow the news to settle in, I always feel a bit different. Because deep down I am happy for them. I’m just equally sad for myself. And, initially at least, the negative overwhelms the positive.

I do, too, feel for the people sharing their news with me too – or at least, the ones that know how much I want another child and what a struggle it has turned out to be for us. Because there is no manual for that situation either. No guidance on how to tell someone who has fertility problems that you are pregnant.

Today’s revelation was one of the better ones. Despite the fact that I really did not see this one coming until precisely three seconds before the news hit me, I felt touched that she had opted to tell me ahead of other friends, to let the news sink in, at least a week before any scan pictures will be floating around. She also told me that she appreciated how difficult it was for me, and I really believed that she didn’t expect me to be jumping up and down with joy for her.

She also said that she hoped more than ever now that our IVF cycle would be successful so that we can be pregnancy buddies. Which was lovely. But I still couldn’t shift the lingering knowledge that her baby, due in August, would still be in a different school year to any child we manage to have. I find myself focusing on these silly details that it probably never occurs to people who haven’t struggled to conceive to think about. But I couldn’t shake either the knowledge of just how precarious conception via IVF is, and just how much can go wrong. And with that thought I’m slapped back in to the pits of jealousy, wishing that I was in that happy position already myself.

I hope, obviously, that soon enough I’ll be pregnant myself. But if that doesn’t happen, I hope that I can perhaps learn to handle the fact that other people’s lives are following the plan that I would have preferred for my own.

Or maybe just once hear a pregnancy announcement without crying.