Ramblings on our last appointment at the clinic
Monday 31st July 2017
It’s strange to be back at the clinic, the place where so much happened and so little happened. Sat in the waiting room looking at the wood panelled wall, the plush blue carpet and matching chairs all round the edge, the tv on quietly in the corner with subtitles telling me the news, tatty magazines on the table in the middle, all with a ‘property of argc sticker’ on them. Here we are again. Waiting again. The last time I was here I was very upset and scared. It feels a bit like aversion therapy to be brought back to the scene of the trauma. But I feel quite numb as we wait.
Being here is different this time. I’m not readying myself for treatment. I’m not joining the inner circle of ladies who are ‘cycling’. The signs to ‘keep your drugs in a cool bag with an ice block during hot weather’, yet another practical consideration for those who are juggling all the demands of the clinic in the hope of their dream result, don’t trigger a planning process of finding the suggested supplies.
In the short time since the miscarriage, it’s less than two months, I’ve had a mental shift away from being the person that does IVF to someone who used to do it but doesn’t want to anymore. I feel a bit like an imposter here. What can they possibly say to us if we’re not going to go down the treatment route? But we were invited for a follow up appointment – or an FU [‘eff you’?] appointment as they naively/ironically called it in their email – and it seems right to round off the years of seeing medical experts with another final session.
We insisted on an appointment with Lovely Doctor, this took a few re-bookings to finally get the one we wanted but it was worth it after our last FU appointment when we had barely 5 minutes of a doctor’s time and came out feeling frustrated, disheartened and no wiser than when we went in.
The appointment began with Lovely Doctor asking what had happened since we were last at the clinic. This was when I realised I’d pushed the memories so far back that I couldn’t respond straight away and it hit me what we were going to talk about. I think that writing about my experience in this blog has helped me move on from it quite quickly.
Doctor was sympathetic and understanding as she explained that while they don’t know the reason for the miscarriage it’s 80% likely to have been an issue with the embryo itself, the other 20% being my immune system or other (unknown) causes.
She asked if we had any questions about our treatment. Yes – Why did my immune levels never reduce? Doctor explained that they don’t really have all the info but from the hundreds of patients they’ve seen they have more success when giving immune treatment even when the levels don’t lower. It’s a vague science because it hasn’t been fully researched yet. So they just know it works better than not doing it. Every time we ask them about the immune theory it seems they can’t quite explain it, they just know it works better than not doing immune treatment. I believe them, but just wish there was more research or science to prove it.
We then moved on to discuss the future – Doctor asked what we were thinking regarding more treatment so I explained that, considering we’ve had 8 goes, we’re not going to have any more as we can’t afford it and don’t feel like it anyway (even if we could afford it) as it was all a bit too overwhelming last time. She was very understanding that we need a break and at some point you have to decide when to stop. She told us that if we did it again with my own eggs the chances would be low anyway at about 5-8%. Alternatively we could improve our chances with donor eggs but we decided years ago that it’s both of us or none of us in this, so that’s not an option.
We asked about continuing to try naturally seeing as we conceived by surprise two years ago. She agreed that this cycle also proved that I can implant an embryo so there’s no reason not to try. Husband asked if there was anything we could do to improve our chances – and there followed a fantastic session where Doctor gave us lots of advice, recommendations of supplements to improve egg and sperm quality and suggestions for tests that might be worth having. I’ll cover the details of her advice in another post but after so many years of clinic appointments with various specialists we were genuinely surprised that there was more to learn, up to this point most of our conversations over the years have been about medical processes and requirements. We were very pleased to have some helpful, supportive feedback, and even if our chances are teeny weeny it was enough to give us the hope to keep trying naturally.
We asked why we had never been tested for chromosomal incompatibility. And whether tests would confirm that there’s actually no point carrying on trying as we’d just keep having miscarriages. She explained this is a valid question but not quite what the problem would be – even if we had some chromosomal abnormalities we would still have around 50% chance of a normal embryo, so it’s never the case that people are entirely incompatible. So at £350 each it’s probably not worth testing unless we want peace of mind. Again this reassured us that our efforts won’t be entirely futile if we keep on trying.
She confirmed my thought that if we were to conceive in future she’d recommend I visit them to help me stay pregnant, they’d give the blood thinners, progesterone (butt stabbing injections!) and retest my immunes and provide treatment to manage my levels if required. I don’t know if I’d go back to the clinic or not as the stress of travelling 6 hours a day might counteract the medical intervention, I’ll cross that bridge if we’re lucky enough to get to it.
This was such an informative, open conversation. We felt thoroughly listened to and came away feeling there were things we could do to take control of our situation even if we’re not going down the medical intervention route.
It was intense concentrating on all the facts she was giving us – for once I wasn’t writing things down myself so I’m deciphering her ‘doctor’s scrawl’ now!
Once we had all the personal advice we needed, we moved on to the second thing we had planned to discuss – we’ve written a letter for the clinic outlining some feedback. We explained we requested our appointment with Lovely Doctor as I have always felt reassured and listened to by her. As we were outlining the feedback I hadn’t intended to mention the day of our 6 week scan as it wasn’t something we’d specified in our letter because we wanted to stick to general themes rather than individual examples. But before I knew it I found myself describing how traumatic that experience had been for me and how different our experiences had been once we were with the NHS. Husband helped counter my traumatic side of the story by making sure it was clear we didn’t blame anyone specifically.
Doctor was really interested in the feedback and we were keen to do it well rather than scapegoating. We agreed that we would send our letter to the clinic and they would look into it.
It was an intense discussion. The last time I had been in this consulting room was when I was in floods of tears and terrified about whatever mysterious pain and physical trauma was about to happen next. So I was rosy cheeked when we finally came out of the appointment, but relieved to have discussed it and had it taken seriously. We bumped into one of my favourite Nice Nurses who looked pleased and expectant when she saw us and didn’t really know what to say when I said we wouldn’t be back but thank you for looking after us so well.
Then it was off to the red door for a blood test – my favourite vampire (phlebotomist) was there to take my blood which felt like a fitting finale.
We left feeling positive but exhausted, our heads full of information and the intensity of the experience. We headed off into the future, to try on our own, without all the interventions and instructions, without the routine and restrictions, without the science and sophistication. Just our fingers crossed.