My advice for fertility patients: be informed and confident in your knowledge about treatment add-ons
By Jo, 40, from east London, who had her baby after five years of fertility treatments
I am snatching a moment to write this as my six-month-old baby is having their lunch nap. My baby. I feel so lucky to be able to write those words. When you have had two rounds of IUI (intrauterine insemination) and five rounds of IVF (in vitro fertilisation), four of them with ICSI (Intra-Cytoplasmic Sperm Injection), it’s a wonderful, miraculous privilege to be able to forget all the confusing acronyms and just listen to their gentle regular breaths as they sleep in the cot.
Of course, it was not a miracle. It was a long journey and there were a lot of doctors and scientists involved, not to mention a lot of expense and, frankly, luck.
We were fortunate enough to have savings that we could use to access private treatment after our NHS-funded cycle was unsuccessful. But we did not have a lot. That meant that every penny was carefully considered.
I think you have to be quite savvy when you see the lists of tests and treatment add-ons offered by private clinics, or you hear about someone using them on forums or social media.
I had an in-built tendency to listen to other people’s experiences and when you are delicate and emotional, it is very hard not to drink in their every word. You listen with your heart and not your head.
My consultant was wonderful and never mentioned treatment add-ons except for ICSI which has a strong evidence base. I was grateful that I had a couple of key questions that I always used when considering whether to ask for any treatment add-ons I had heard about. And I know that the HFEA has now produced a list of questions to ask your clinic about treatment add-ons that I wish I had when I was going through this.
Here's my advice.
First of all: be informed! I read everything I could about IVF, starting with the NHS and the HFEA advice. You need to know what is part of a routine treatment cycle and what is an add-on. This can be confusing since the quoted price for a cycle often does not include the drugs, so this can look like an add-on even though it is necessary. You can start thinking that if the drugs are additional but necessary then other things must be also, but this is not the case.
Secondly, use the information you have to be confident. When I went to see the consultant, I was not bamboozled by terminology. I knew what they were talking about and I could ask questions. I found the HFEA’s traffic light system very helpful because it let me see at a glance how much evidence there was to support the treatment add-on I was considering. It is a balancing act: would one cycle of treatment with an add-on be any more likely to succeed than multiple routine cycles without them? It always seemed to me that more was better! My consultant agreed. So we didn’t pay for any add-ons and put our money towards additional cycles instead.
Tests too can be tempting because, deep down, you always want to know why you cannot get pregnant. But, at a certain point, I had to let go of finding out the reason and concentrate on the treatment. Perhaps there was an expensive blood test that might have given a tiny bit more clarity on something. I just kept asking: would this test change the treatment? Would it make any difference to the round of IVF I was about to do? When the answer was no then I said no to it. I also managed to use the recent results from my NHS tests at my private clinic to avoid repeating them, so check if this is a possibility for you too.
Make sure that you are clear about whether you will do any treatment add-ons in advance. The embryologist might come to see you to discuss treatment on the day of egg collection when you have just come round from the general anaesthetic, and you can be a bit foggy and vulnerable at this point. This happened to me on our second private cycle. The embryologist came to the room to discuss using ICSI, which had an additional charge. My partner and I had discussed this possibility in advance, so we were happy to go ahead. But, if you have not had those discussions beforehand, you might find it stressful weighing up the options when the decision is time-sensitive.
Infertility is hard because it takes all the control away from you. I found it comforting to at least take control over my treatment choices. For me, there was reassurance in being as informed as possible. I hope that you find the same.
Review date: 5 July 2023