2013-05-27

On 27th March we found out that our first attempt at IVF had not worked and three weeks later the clinic wrote to us and offered us an appointment with a Consultant to discuss our treatment options. Well our appointment finally came around today, two months after the negative pregnancy test and almost a week after we started our second cycle of IVF treatment. I must admit the husband and I found this quite unsatisfactory, as we had no clear answers about why the first go had not worked or what our chances of success were based on the progress to date, and we felt a bit abandoned by the system.

Last Friday the IVF clinic phoned me and left a message on my phone to check that we still wanted our follow up appointment as we had already started the second go. Er…. Yes… because we had not had the opportunity to talk through the first attempt yet with the relevant medical professional, and because the husband wanted to be involved in the conversation. I was off out so the husband called the clinic back and let them know that we did intend to come in and mentioned that we wanted the chance to discuss things and that starting treatment again was not a substitute for this. They were… not entirely sympathetic to this.

And this was replicated in a generally frustrating meeting with the Consultant today. From the start he made it clear that he felt we were wasting his time. I’m not saying he was actively rude, but it was obvious that he just could not grasp that this was a confusing process for us and that we did not have adequate information to understand or contextualise our chances of success. He also demonstrated no interest in our wellbeing and how this confusion was affecting us. We seemed to just baffle him.

He also said (and I’m paraphrasing) that it was totally unnecessary to have follow up appointments so we were frickin lucky to get to see him at all, and anyway in other departments we’d not have had an appointment in three or four months so we should man up and sod off. In my view there is no justification for leaving vulnerable people to find out their complex medical information from the internet, and that attempting to bump us across to counselling in the hope that we’ll quit our whinging does not replace the need for medical advice.

It was made clear in the session that we were statistical outliers, and that it was very unusual for people to be in our position with so many excellent quality frozen embryos. We had never been told up until this point how good quality our frozen embryos were. It seems that all seven are really tip top quality, 4AAs (which is what we had transferred) and 5AAs (even better). For reference, a 3AA (not as good as these) would have also been pronounced excellent. So yes, all good, but because “we wouldn’t have frozen them if they were not good quality” we lay-embryo-producers are seemingly supposed to automatically understand the consequences and potential for success.

One of my questions for the Consultant was about our chances of success with a frozen embryo. It said in the clinic-provided literature that the chance of success was 20% if two embryos were implanted through a frozen cycle. Now as we are only allowed to transfer one, and as the success rate is reported to be about half as good as with a fresh cycle we wanted to know if we’d be better to do a fresh cycle. We didn’t know why the stats indicated it was a much worse option than a fresh cycle, was it something to do with the freeze and thaw that lowered the success rate? It seems that no, if an excellent quality embryo thaws then it continues to be the same excellent quality embryo that it always was, and it essentially identical to growing a new excellent quality embryo in a fresh cycle. Plus we are not allowed to have a fresh cycle if we have any frozen embryos anyway. The Consultant said “Like… duh” – again, I paraphrase. But how were we meant to know all that unless he told us?

I also had concerns around the fact that I had so easily grown these excellent quality embryos and yet I had never managed to conceive naturally – so did this imply that I was regularly growing embryos over the last four years but that they were not implanting for some reason? This question was entirely dismissed – simply not addressed despite asking twice. I have read on the internet that something like 5% of women with unexplained infertility have inhospitable womb environments and embryos just won’t take. This wasn’t mentioned in response to my question – probably because the NHS does not currently treat this and their approach is just to keep putting the embryos in until they run out.

The fact that we are statistical outliers is very important in all this, as it means that any literature and stats that we have been given or accessed elsewhere is simply not relevant to us. As as it happens the husband and I both have an excellent grasp of stats so we suspected this, but we also had no access to information or relevant stats about what the position we were in implied for our future chances of success or failure. So really we were even more in the dark than most people whose IVF failed might be.

Oh, it was so frustrating. I felt like a petulant child pushing my questions when the Consultant already thought he had answered them, especially when he was so dismissive and clearly wanted to move us on – shutting the file and trying to close down the conversation. But we just were not getting anywhere with finding answers to what we felt we needed to know.

A senior nurse sat in on the appointment, and she took us to the side on the way out and chatted to us for about ten minutes. She did much more good in that ten minutes than the Consultant did in the formal appointment. She answered some questions, reassured us about our situation, offered an appropriate amount of compassion, and gracefully accepted our feedback about the way that the system impacted on our wellbeing. She was outstanding, and we will put in a formal letter of thanks to her at some point down the line.

Upon reflection my interpretation of this frustrating situation is that the Consultant was very confident that we had a really good chance of success and felt all was in our favour so we should just keep sticking the embryos back in until one worked. But because this was so obvious to him, he thought we should somehow just know this too. Well we didn’t know this, we needed him to tell us and we valued his professional opinion for our own peace of mind.

Now don’t get me wrong, we are hugely grateful to the NHS for giving us this treatment and for the kindness and indeed efficiency of the IVF clinic during the actual IVF cycle. We have no desire to waste NHS resources by taking up unnecessary amounts of their time or to be overly critical of something we are not paying for. But… it is a shame, it would have been so easy for the Consultant to say “it all went well and your embryos are plentiful and excellent in quality. It was probably just the bad luck of the odds that it didn’t work this time and science doesn’t tell us much about why. I can’t promise anything but everything is in your favour and if you have another go or two it will probably work.” That would have been lovely, and we’d have been out the door in five minutes. Grr. It just takes a bit of (dare I say it) customer care. Something holistic and patient-centred. Like… listening?

On the plus side, the stuff about the embryo quality and its (non) effect on the frozen embryo transfer stats has given me some hope that it is worth feeling good about this try… plus the Consultant said it was possible to have less long between transfers if the waiting list permitted so we might not have to wait two months if we had to do it again.

And I won’t need to see the Consultant again until he has his hands on my embryo and his fingers up my… you know…

Onwards and upwards.

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