BBC Radio 4, Friday 29 May 2015/Monday 1 June 2015
How do couples who have undergone unsuccessful cycles of IVF decide when enough is enough? Should people try to set a personal 'limit' of cycles before treatment begins? And what support is out there if treatment doesn't work?
These are some of the questions that have been raised on Radio 4 during a series of broadcasts, including a discussion, documentary and a phone-in about the 'rollercoaster' that is IVF.
In 'Woman’s Hour' on Friday 29 May, Jenni Murray introduced the subject with the stark statistic that only a quarter of IVF treatment cycles result in a live birth. Yet for many, even a one percent chance that it could bring them their dreamed-of baby is enough to have a go.
Two of her guests were Lesley and Roger, who began IVF treatment when Lesley was 36. After six cycles - five of which were paid for privately - by which time Lesley had reached 40, they decided to stop. Lesley explains that statistically, the chances for success really 'drop off' at 40 years of age, so for her, it seemed to be the best cut off point for stopping treatment.
In the end, she says she couldn't have stood any more, either emotionally or physically.
The strain of the IVF journey is a recurring theme among all those involved in these shows, and it is the emotional toll - above the physical and financial toll - that is so often cited as the hardest part. Two callers on the phone-in programme broadcast on Monday 1 June, described it as 'gruelling', while Lesley likens the stress to a rollercoaster, and talks of the 'despair and grief' when it doesn't work.
Indeed, the point at which she and Roger ceased treatment altogether was the hardest. Roger talks about a void opening up in their lives after the intensity of four years of treatment. He also talks about the impact of having to re-shape their future, to accept that the 'death of a dream' meant wondering what they would actually be doing for the next 20 years if it wasn't raising a family?
What they are doing, particularly Lesley, is an 'inspiration', said Kate Brian from Infertility Network UK, who was also on the Woman's Hour panel. Lesley admits it took her over 10 years to resolve what her life would involve if it wasn't motherhood, and after being left to 'struggle on' with no offers of professional help, she and Roger got involved with More To Life - a charity offering support for those who are involuntarily childless - and made connections with those going through something similar. Roger described it as a lifesaver, while Brian highlighted that other than these kinds of charitable groups, there is not a lot of help available for couples whose IVF treatment has ended unsuccessfully.
Lesley also acts as a professional coach to those who have been through failed IVF, working with women who 'want to have a better life but don't know what it is'.
In the documentary 'Drawing the line: when IVF doesn't work', which Lesley and Roger also took part in, Lesley explained that she became interested in neuro-linguistic programming as a way to let go of the negative emotions that were causing her to hold on to her grief and sadness, and it is these techniques that she uses with other women. They work to build up the inner strength to deal with questions like 'do you have children?' and how to deal with people showing them their baby scan photos. The focus is on building your values and your purpose in life, says Lesley.
The documentary, presented by Charlotte Smith, followed the IVF journey of Laura, who was receiving treatment to try and give her IVF-born daughter a much-wanted sibling. Laura described the waiting period after the embryo had been transferred into her uterus as horrendous: 'One minute you think it has worked, and one minute you think it hasn't, and only a blood test will tell.'
Laura and her husband have a 'plan B' if this cycle doesn't work. As they have three frozen embryos that were created during her first round of IVF when they had their daughter, they have agreed to do one more. Laura says that if someone could guarantee it would work eventually, she would keep going after that 'for sure', but the fact that no-one can ever tell means 'you have to have a limit'.
But how do you set that limit? Sometimes it is driven by what the NHS can offer. Tony and Eleanor, a couple Smith meets in her documentary, were offered three cycles of NHS-funded IVF before she reached 40, which meant undergoing all three rounds in 14 months, something that left her feeling exhausted, with headaches, constant upset and pain and cramping that left her in tears.
What they weren't expecting however, was the trauma after none of it had worked, and no explanation or suggestions for what happens next. Eleanor felt she had gotten to a point where she couldn't go on, and while Tony remained open to them trying again either by paying privately or by going abroad, he felt he was pushing Eleanor towards 'torture'.
In the end, they decided that having biological children was not as important to them as the need to have a family, and they are now very happily on the path towards adoption.
Sadly, at the end of the documentary, we hear that Laura's IVF cycle has been unsuccessful. While she and her husband had planned to do one more cycle, she says that they are heartbroken and 'think we might call it a day at this point'. This exemplifies what Kate Brian alluded to during the earlier Woman's Hour feature, that people may not want to undertake as much treatment as they set out to do, because it's a 'really, really tough journey'.
One caller to the Woman's Hour phone-in describes how a consultant suggested to her and her partner that they should 'be kind to themselves and stop'. But at what point could a couple hear this and be ready to take that advice?
Alison Murdoch, professor of reproductive medicine at Newcastle Fertility Centre, who took part in the phone-in, says that as a treatment provider, she couldn't 'stand in front of someone and tell them to stop', but that they must come to that understanding themselves. 'People say we can't "close" until we've had a go and seen that it doesn't work. And if it helps people to move on by just doing it, I'm not against that,' she said. But she feels that if people are coming back again and again for treatment with little chance of success, then she has failed in her role.
One of the clear themes from each of these programmes is the apparent lack of support for couples in the UK who do not conceive after - sometimes years of - unsuccessful IVF treatment. One caller to the phone-in raises the point that without an independent body to give advice, people can end up in a situation where they are paying for treatment without a high chance of success, where private companies might be happy to keep taking money from people whose desire for a child is so desperate that they feel compelled to go on and on.
At the moment, it is Lesley's story which offers the most hope to couples who are struggling at the end of their journey. She boldly and confidently says that now, childlessness is the best thing in her life, because without 'going through the fire', she wouldn't have the life she does now, full of positivity.