I’d like to introduce you all to Jess Jones! Jess blogs over at Infertility & Life and is also a fellow Huff Post contributor. She’s been interviewed, numerous times, on BBC Radio Leicestershire, and has an appearance on ITV’s Lorraine show under her belt too; I’m sure you’ll all agree I’m leaving you in incredibly capable hands for this post!
Jess was one of the first people to engage with my blog and since then we’ve struck up a friendship. Jess is still, heavily, entrenched on the IVF rollercoaster, finishing her fourth cycle before Christmas, sadly without the ending she was looking for. However, the Jones family have one little embryo, sitting on ice, hopefully waiting to turn in to their miracle.
Upon reading Jess’ blog I was struck by how much she’s had to fight for her treatment and push to try procedures which, frustratingly, aren’t offered as the norm. I therefore asked Jess to write a post for me to, hopefully, give anyone currently going through IVF the confidence to know that it’s okay to ask for something different, and that sometimes you really do have to pressure your clinic in to doing so; one size definitely does not fit all when it comes to dealing with infertility.
Towards the end of our treatment I had researched so much that I was a walking encyclopaedia on our form of infertility and ICSI and I, eventually, did learn to fight for myself, something I’ve never particularly found easy; I’d have definitely appreciated Jess’ support and insight back then.
And so, without any further ado, I’ll hand you over to Jess…
When we began our first cycle of IVF in March 2016, I had no idea what was going on. Absolutely no clue. I expected the first cycle to work, so I didn’t need to understand anything right?! Just take the drugs they told me to and all would be well, we’d have a mini-me in no time.
It didn’t work out like that.
The first cycle I reacted very poorly, and we only got one egg fertilised. We had it transferred but it was already degrading and we knew our chances were low. It didn’t implant. We moved onto the second cycle quickly, same drugs, used same poor response. Two eggs fertilised, however neither implanted.
Our clinic then told us to give up and use embryo donation instead.
I was shocked, how could that be it? Surely there was something else we could do? Different drugs, different protocol, different something? I felt like we had just been brushed under the carpet, a couple of no-hopers turfed out. The clinic refused to treat us with our own gametes again, they said our chances were too low.
With our tails between our legs we left that hospital without any idea of what to do next, so we started goggling things – poor response, low chance IVF…
I am a control freak. The worst thing, for someone like me, is to lose all control through an infertility journey. And that is the reality of infertility; you are completely at the whim of the professional, medical people. Everything happens on their timescales, with their say-so and on their opinion. For me, this is one of the hardest things; letting go of our destiny, having no influence over how, and when, we create our family and trusting complete strangers.
So I decided this approach was not for me.
I needed to put us in a position where I knew some of what was going on, where I wasn’t just a puppet, being moved around by the consultants, and where I could have an input in our journey.
I like to read and I like to understand a subject so I hit the books, as it were. And by books I mean both electronic and traditional, I read everything from personal stories to the latest research findings. We also attended The Fertility Show in London, an annual event which hosts lots of clinics so you can ask questions and listen to lectures and seminars on different topics.
Over the next year I would learn as much as I could about IVF treatments and what options are available. We spoke to a different clinic who tried completely different drugs and a totally different protocol, which gave us much better results, but we didn’t get a pregnancy. We changed clinics again, we paid for extra tests and signed up to a research project on Natural Killer Cells, we then got our best result so far, but still no pregnancy.
Like many ladies on an infertility journey, you learn to become your own advocate. You learn to speak up for yourself. We’ve had four failed transfers now, in total six embryos have not implanted. I read everything I can about what can aid implantation and what can harm it. We know my egg quality is not good so I take a lot of supplements, to help this, and I try to live a healthy life. I do all I can to ensure, from my side, that I’m giving it the best chance – but I need my clinic to do the same.
One size does not fit all IVF cycles. There are many couples, and women, who do get success on their first or second cycle, so they don’t have the necessity to research everything. Unfortunately when it’s failed multiple times, we need to be able to speak up for ourselves in an educated way and make constructive suggestions and positive contributions. Whilst I appreciate that the hospital wants us to get success for its statistics, no one wants the success more than we do, so we have to take some responsibility for that – even though we’re not trained doctors.
It can be a minefield though and it can get very frustrating. There are no consistent guidelines from the HFEA (Human Fertilisation and Embryology Authority) and so clinics really are at the whim of the director and seem to do things ‘as a matter of opinion’.
Progesterone was one such ‘opinion’. One of our clinics tested my progesterone before transfer, as they said it had a big impact upon the success of the outcome, the next clinic didn’t and didn’t feel the need to. Who do you trust? Well, we insisted upon a progesterone test anyway, just to be on the safe side.
Another time I read that one of the most common reasons for implantation failure is not enough progesterone support after transfer. We had always been prescribed progesterone pessaries, which are messy things and half of it comes back out – I’m never sure they’re very good. I noticed a lot of the American girls, on Instagram, were talking about PIO – Progesterone In Oil (an injection), so I researched it, found much evidence to suggest it’s better, than the pessaries, and we insisted on it for our last cycle. The consultant agreed the injection was better but the really frustrating thing is, if he agreed, why hadn’t he suggested it to us? If I hadn’t researched it, we would never have known. I’ve spoken to countless women who have also asked for the injection rather than being offered it as a choice.
These are not unusual stories.
I know of women who were on waiting lists of eight months, or more, and asked for Clomid, in the meantime, to try – and ended up pregnant, without the use of IVF. If a consultant knows you’ve got a long wait between appointments, why are they not suggesting this in the first place, why are we asking them?
Or women who have asked about supplements and been told that “everyone on an infertility journey should be taking Vitamin D” – really?! Then we need to be told this information!
I know some ladies are not confident to speak up at their clinics. Afraid of being shot down, or accused of believing in ‘doctor google’ but, quite frankly, you need to start somewhere and if it begins conversations with the consultant – who cares where it comes from. The point is not to tell, but to ask, and hopefully get as much information as you can and enter into a discussion with your medical professionals.
We should not be scared to speak out. We should not be prevented from having an input in our journey, nor treated like idiots or chess pieces to be moved around at their will. We should be encouraged to take responsibility for our infertility treatment (surely the more heads on this the better?!) and we should be comfortable enough to question and challenge.
Maybe we shouldn’t need to, maybe in an ideal world we would all get specific, individualised, personal care tailored to our own situation – however whilst hospitals and clinics still believe ‘one size fits all’, we must be our own champion.
A huge thanks to Jess, for writing this post, and I know you’ll all wish her well as she continues on her journey.