The journey to make a family is different for everyone, so to show the amazing diversity, brave women, men and couples are sharing in this new series “My Hope Squad Stories”.
Together, we need to change how others view the diversity in making families. To let them know it’s something beautiful, and if they are looking at their own options, they are’t alone. The Hope Squad have got their back.
Today’s story is from Eleanor, dealing with azoospermia….
I suppose you could say that our infertility story began about 14 years ago. Sat on my 17 year old boyfriend’s bed, I asked ‘Do you want children one day?’ and watched him make a variety of terrified expressions while he tried to work out which answer meant he got to keep going out with me!
At the time, he uttered a decidedly uncertain ‘uhhh, yes?’, but by the time we got married after 12 years together, it was undoubtedly the next step for us. After we both finished our degrees, we’d been waiting to start trying for a few years while we bought our house and planned our wedding, and so when the month we’d had penciled in in our minds came around, I held no doubt that, just like my Mum had done, I would fall pregnant within the first few months. 27 months later however the excited bubble, and the person who still believed it possible that we’d be parents of two by the time I turned 30, seems a very distant memory.
After 12 months of trying, I went to see the doctor. He assured me that we were still right at the beginning, that at 28 and 29 we were still young and that it’s not unusual for perfectly healthy couples to be trying for 18 months or more before falling pregnant – none of which I found especially helpful. He suggested we test my hormone levels to put my mind at ease, so I had three blood tests at various points in my cycle to check that my progesterone levels indicated I was ovulating. Given that my cycle is like clockwork, he correctly predicted that everything would come back normal.
So, reassured somewhat, we carried on for another six months. Six months of counting days and waving ovulation predictor sticks around demanding – “now, we have to do this right now!!” and six months of thinking that this was far from fun when everybody kept telling us to just enjoy it and relax.
We tried everything we could think of – multivitamins, no caffeine, a holiday, sex every three days, sex everyday, laying upside down for half an hour, clean eating, no dairy, the ‘fuck it this isn’t working and I’ve just seen a heavily pregnant woman with a cigarette let’s just get drunk’ approach, and still not even a glimmer of that second pink line.
So, in October last year, after 22 months of thinking ‘next month, surely it’ll be us next month’, my husband, D, drove to the hospital with a semen sample in his armpit so it didn’t get too cold, and we waited for the results. The doctor phoned while we were on holiday in Sweden to tell us that there weren’t enough sperm in the sample to test, so it would have to be repeated. I was so relieved. So relieved that there was something wrong. My worst fear had been that everything would be fine and we’d be sent away to carry on the monthly torment by ourselves, but no, this was something we could hopefully do something about. Also, not enough sperm must mean some sperm, right?
The test was repeated the following week and we went to the doctors together to discuss the results. It turns out not enough sperm did not mean there were some sperm. While the rest of the sample was made up of everything that’s supposed to be there, in both samples there had been a total volume of 0% sperm. Not even one.
‘Not even one’, were my first words once we’d heard the prognosis. In that very moment we became part of a whole different system, a whole different community of people. We weren’t trying for a baby anymore, we were dealing with infertility.
The doctor told us about there are two different types of azoospermia, which is the medical name for an absence of sperm in the semen. Obstructive, where the testicles make sperm but it cant get through because of a blockage or similar, and non-obstructive, where there is a problem with sperm production. He referred us to a fertility specialist at our local hospital to start investigating which D has, and explained that surgical sperm retrieval and IVF would be our only option if we wanted a biological child.
We had to wait two months for that appointment, and sitting in the waiting room among all the other couples in January felt bizarre. How had we ended up here? This wasn’t the way it was supposed to be.
The specialist booked us both in for more blood tests, to check my egg reserves and to check D’s testosterone and FSH level, and also to check for any chromosome disorders and to make sure he wasn’t a carrier of cystic fibrosis. I also had an internal ultrasound to check my uterus and ovaries all looked ok. I’d been remarkably ok until the nurse turned the screen towards me, just like they do on the TV, when couples get the first glimpse of their growing babies, and showed me how very non-pregnant I was. Everything looked absolutely fine, but seeing something so inherently linked with having a baby when I wasn’t hammered the whole situation home.
The doctor told us he suspected non-obstructive azoospermia, most likely caused because of an operation D had when he was child to lower his testicles, and that the blood test results would tell us more. This operation was routinely performed later in a boy’s life during the nineties, but more recently (because those boys of the nineties are now men trying for families) doctors have realised that if left too long, it could affect the fertility of as many as 90% of men who have had it. D was around seven when he had his, and it would now be done before a baby boy turns one.
So, off we went to get our bloods done, clutching a slip of paper with the details of Bourn Hall, a private fertility clinic. This set of blood tests would be the last we could have on the NHS because in our area, male factor infertility isn’t funded at all.
Fast forward six weeks and we were on our way to Cambridge to meet our andrologist (which we’ve since learned is the name for a doctor who does the opposite of gynaecology) He looked at D’s testosterone and FSH levels and confirmed that his low testosterone and high FSH level indicated non-obstructive azoospermia. He drew us a very nice squiggly diagram to explain, but basically his body isn’t producing sperm properly, and his pituitary gland is shouting at his testicles to make some, hence the high FSH level.
He prescribed Clomid, which is off-lable and untested for use in men, and usually only prescribed to women. However, he said he had seen some very promising results and that it can trigger increased sperm production in men in a similar position to D. He will be taking it for three months, and will then go back to Cambridge for Micro-TESE (or microscopic testicular sperm extraction) where they will, to use the doctors words “open the scrotum” and examine the testicles for sperm, either until they find some, or until they’ve unsuccessfully looked everywhere.
If they find some sperm, it will be frozen and I will then start my half of the IVF proceedings, and if they don’t…well, we’re trying to not even approach that bridge until it’s necessary, although realistically it will be a choice between using a sperm donor, or adopting and as yet we’re unsure how we feel.
That phrase could sum up how I’ve felt about this whole journey so far. Nobody really knows how it feels, and sometimes we don’t really know how we feel either. A single word suddenly has the power to have me holding back tears, and sometimes I feel like if I hear ‘you’ll get there, it’ll happen’ one more time I might give up altogether. Because it might, but it also might not, and being out of control is something I don’t deal well with. I stumbled across a phrase the other day; ‘Inner Strength is Quiet’ and it really spoke to me. On the outside, I’m dealing with this whole thing. I’ve been promoted at work, I’ve been optimistic and glad that we’re moving forwards. I’ve not cried in public (much) or cancelled plans. Some days though, on the inside, it feels like I’m using every bit of energy I have not to literally crack into two.
People ask if I’m ok, and the reply is always ‘yeah I’m good thanks.’ If I tell people that I almost cried on the train because a grown man pulled a carton of Ribena out of his pocket and every missing thing about having a child came crashing down around me then they might start thinking I’ve gone round the twist!
Some days it’s the truth and I really am fine. Sometimes it feels like this was just the way things are meant to be for us and we’re optimistic, hopeful. At other times, I feel like at any moment pieces of me might start floating away, like Voldemort crumbling at the end of The Deathly Hallows and all I want to do is wrap myself in a duvet to hold all the bits of me together.
I think the thing that I’ve struggled with most are the range of emotions that I just didn’t expect to feel about trying to start a family: guilt, fear, resentment, even jealously. It’s the most horrible feeling when you realise your first reaction to a family member announcing they’re pregnant isn’t joy, but to burst into tears because you wish it was you. Of course the joy and happiness is there, but it’s accompanied by a bitter side note of ‘it should be us by now.’
D has continually tried to remind me that we don’t know everyone’s stories, and as more and more people around me (both in person and those I follow online) seemed to be announcing they were pregnant, I’ve tried really hard to remember that not everyone shares their story and they might have gone though the same torment as us before sharing their joy.
That’s part of why I’m so keen to talk about our journey. Every time I’ve mentioned it, even briefly on social media I get messages from people saying ‘us too’ and while sharing is a completely individual decision, I think we’d all feel less alone if more people who felt able to talked about it. That would be my advice to anyone else struggling in silence. Talk. You can guarantee that however horrible you think your thoughts are, someone else has felt them too, and however alone you feel, there are other couples who are feeling like they’re the only ones this isn’t happening for. A problem shared isn’t exactly a problem halved in this instance, but talking can certainly make this often lonely place feel a lot more friendly.
If you’d like a little extra support with issues brought up here, there’s a fab list here