Feeling powerless, out of control of their fate, was one of the things that people said they found most distressing about their infertility journeys. Here we discuss feelings about choices, control and the sometimes very difficult decision about whether to continue treatment or stop.
The lack of control people felt they had over their treatment and its outcome was often very stressful. Lulu said ‘I definitely wanted to be in control and I think that is probably an issue about the IVF, is that you kind of think you have a decision in something, and you don’t’. Clare’s tubes were blocked, so ‘We did have a choice as to whether to go for IVF or not, but if we wanted a baby that was the only way we were going to have one’. Similarly Maggie felt the choice was ‘You either have fertility treatment or you don’t’.
One of the decision areas that people did exercise some control over was, once they were in treatment, how long they were going to continue. Some talked about setting themselves limits, for example, two or three cycles of IVF. In some cases these limits were dictated by finances, for others their stamina for treatment. But these limits were sometimes hard to stick to. Oliver said that he would never have believed how long it would take them to get a child, but once you are involved in IVF, ‘You’re just on that treadmill so you just keeping going and you just do what you’ve got to do’.
Couples sometimes felt that they would not be able to live with the consequences if they felt that they had left any stone unturned in their efforts to have a baby. People’s feelings about which sacrifices it was sensible to make in order to have a child sometimes changed over time as they realised the toll that the treatment was having on their lives and that other options were possible.
Christine is a GP. She said that she had stopped commenting when her patients told her they were going to stop treatment after the next IVF cycle. They often came back and said they were doing another. She said now, ‘Actually I genuinely don’t believe that you can be sure you’ve stopped until you’ve stopped’.
Some people we spoke to welcomed their doctor’s help in making decisions about treatment options. It could be a relief to feel that someone else was in the driving seat. Lulu said, ‘Somebody took a weight off my shoulders. Somebody made that decision for me’. Some felt that, no matter how much they could read up on infertility in textbooks or online, their doctor was still the expert and should give more direction. With hindsight, if treatment had not worked, couples sometimes said that they wished they had been encouraged to stop earlier. It is not easy for doctors and nurses (or family and friends) to be both hopeful and realistic.
After a treatment cycle has failed, summoning up the emotional strength to start again can be very hard. Naomi and Martin stopped treatment and started to look into adopting. After a year, they realised that they had healed sufficiently to try one last time, this time with donor eggs and sperm. They conceived and were pregnant with twins at the time of the interview.
After their first cycle failed, Clare found that counselling helped her and her husband make the decision to try IVF again. Although she would happily have left it for longer, she felt that because of her age she didn’t have that option.
When he and his wife started trying for a family, Mike suspected that he would not have any viable sperm because of treatment he had had several years previously. He therefore had a mental back up plan which he found really helpful when he was told his sperm were ‘no go’.
Women were often acutely aware of their age and the reducing chances of success as they went through their 30s and early 40s. Several set themselves a limit on the basis of age. Susan, who had her last treatment abroad at the age of 50 (and also suffered from endometriosis) said that when she was young she had forever but, ‘You don’t realise how quickly the years pass’.
Deciding to stop
Those who had made the difficult decision to stop treatment altogether said it was a painful decision. Sally said the decision was a hard one but she felt, ‘We’d had our chance, more chances than most’ and it was time to move on. She and her husband moved to a new city.
Sarah explained that the time came when she realised that there was no point continuing because, ‘The odds were so stacked against us’. She felt, ‘There wouldn’t be anything else you would do in life that had got such a small chance of succeeding.’ But it was not a clean, clear cut decision. She said, ‘Even when you have made that decision you still can’t help but still keep revisiting and keep thinking, nothing is ever completely finished’.
Looking back several years, Janine described how it, ‘Must have got to the point of being so painful that we said we have to stop doing this to ourselves now’. Joanna and her husband decided to stop and went on to adopt two girls. But she found it a very difficult decision, ‘Because it is only after you stop that you realise how much you really, really wanted a baby’.