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”.
Catherine is a writer, married with two children. Ethnic background' White British.
I mean I think that’s one of the most difficult things about it, the whole, there, there’s no choice at all. You just feel you’re completely at the mercy of other people. Like when they’re deciding to give you your next appointment, when they can fit you in. I mean I think that’s partly why so many people end up paying quite early down the route, is that if you don’t do that you just feel like you’re endlessly waiting. You’re waiting for tests, you’re waiting for results, you’re waiting for treatment. It’s all just one long wait. And every single month you’ve got another period, another month that you’re not pregnant, another month that you’re becoming older and less fertile. And I think that’s what’s really difficult about it. And it does start to feel like you’ve been put on this kind of, you know, sort of conveyor belt, and you’re just going through this thing with all these things happening to you with absolutely no control over it whatsoever. And I felt completely out of control. And I think that’s actually one of the most difficult things, especially if you’re used to being quite in control of your life. To feel everything’s just completely slipped away from you was really really tough actually.
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”.
Sandra is a nanny, living with her husband. White British.
And so you’re surprised by how far, how many treatments you’ve landed up having?
Yes, yes. I didn’t think we thought we would certainly be doing seven cycles. But I also think we were quite naive in the beginning where we thought it would probably work early on, even though the statistics don’t show that. But you always think it will happen to you, you, to you. You know, you’ll be the, one of the lucky ones. So, yes, we didn’t think we’d be this far into it.
And has it been a question of each time you finish a cycle and it hasn’t worked you think, has it been a decision at the end of each cycle? Or have you sort of set yourself a target and, or not a target but a sort of a limit and then worked your way up to that?
Yes, I think we’ve always thought, “Well, we’ll stop” but the other part is, “No, we can carry on, because we’re sure this will work.” So it’s been kind of two different emotions if you like, if that makes sense.
And have you, have you talked about how far you’ll go and how much further you’ll go?
I think, we say different things. I think we tend to say that this is going to be it, because this will be our seventh and I’m 42 and my husband will be 44. So we think that, probably 90% of us says that that, we will have to stop if it doesn’t work. But it’s harder, because obviously, if it doesn’t, you think, “Okay. What about if we do have one more go?” But at the moment I think we’ll say, “This will be our last.” But then you have another conversation and it’s, “What if?” you know. But then it’s money as well. You’ve got to think of finances.
Age at interview:
Age at diagnosis:
Martha is an American writer, living in Scotland. She is married with two children. Ethnic background' White American.
I had mentally had set this limit, I said when [daughter] turns four, I am not doing this anymore, you know, we are going to do something else, you know, we will adopt or just not, you know, just have the one or whatever. You know, but I don’t want to sort of carry this on after that, and that is where it was really awful was because we had those frozen embryos it actually meant we had to go past that, you know, what I had always sort of set as my mental cut off and then it is just kind of disheartening, because you sort of, in a way, even though yes, they are doing something allegedly positive, it was also like I kind of geared myself up for okay at this point I don’t have to do this anymore. I don’t have to think about this anymore. You know, we are just going to do something else. And it wasn’t it was actually, I think it was a month to the day after she turned four that they did the embryo thingy thing. Put them back in.
Why was it important for you to set that date?
Because it just I mean the whole thing it just starts to seem, it seems endless and it also seems like, I think the sort of, it is sort of like the blessing and the curse of this technology is that you can go on with it forever. As long as you have money. As long as you have patience, you can keep going on with it and I mean we didn’t have money to go on with it forever. But to an extent you sort of wonder where it is ever going to end and you wonder when your life is not going to be controlled by that any more, and you wonder when, you know, just everything. Everything was coloured by it. there was no one minute of the day that wasn’t sort of overwhelmed by this whole thing and I think it was just for me anyway, it was just the need to feel like at some point it wouldn’t be like that anymore. And you know, it had been like that since [daughter] was a baby really and it just, I just didn’t, I mean that was why, I mean I just didn’t want to have to think that it was always going to be that way, so… I think that was why.
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.
Tim is an engineer, married to Carol (08). Ethnic background' White British.
Because I mean, one thing, that is the big problem, is where to stop if it doesn’t work. Now, we did say right at the beginning of it, “We have got enough money, we will do four goes and then that will be the big cut off.” Because we decided there has to be a cut off otherwise this could go on forever. Now obviously we have gone past that and we are talking about going further. So although it is a good idea to have a cutoff point, whether you can actually stick to it is another matter. Financially some people might say we have got xx amount of money in the bank, that gives us three treatments and then that is end of it. Cut off. And they will be able to do it. Unfortunately it is one of those things, it is like, if we have one more go, it might work this time, if we have one more go it might work this time. Unfortunately the effects aren’t cumulative but you don’t see it as that. You look at it as if we have invested xx thousands pounds already, it would be a shame for the sake of another two thousand pounds that we don’t get anything else out of it, but it is not like money pumping into a company to bail it out. It is a case of the more money you put in it is just gone at the end of it if there is nothing to show for it. So yes, very, I’m very surprised how long it has gone on for. Because again the first couple of times you do it, you think it is going to work, because you know, a one in four chance, there is some people, because you hear, at the start you hear about people who have done it and have eight or nine attempts before it works, and instead of putting you off that actually makes you think. Oh well that makes my chances better, but then you hear more about people who get it first time and then it is like obviously that pushes your chances out a bit. But every, all things being equal, it would be, I have got as much chance as anybody else. But unfortunately we don’t know why the human body doesn’t accept the embryos. But we do get, we get viable embryos which some people don’t, as we got on our second cycle we didn’t get anything else to put back. So on the one hand you might, what is worse having nothing to put back but not having that two weeks of hell or having something to put back and waiting two weeks to find out it has not worked. Or even worse if you find out yes I am pregnant and then miscarry in the seventeen eighteen or something. You know, what is actually the worst things that can happen.
And do you feel that you have been able to make choices and decisions or do you feel about the treatment, or do you still feel that you are more sucked into it and compelled to keep going?
Yes. I think we are compelled to keep going because its… We had throughout the first cycle we had frozen embryos and we were going to say right what we will do, that is the last fresh cycle we are going to do, we will now do frozen embryos and see what goes out. Then the consultant recommended well why don’t you take a fresh cycle straight to blastocyst and see how that goes. So of course we went for that one, so that didn’t work and now taken it to blastocyst we had nothing left to freeze but we have still got those five embryos. But now we have still got five embryos left, so you wouldn’t say well we will just throw them away because we are going to do one last cycle and that is it, so you are now committed to well we will use these up now. So that is another two cycles, you go down that route. And then it will be well why don’t we try something different? And its… it does seem like a never ending route. It is a good idea to have a cut off but whether you can stick to it, because we had a cut off and we have gone past it so… I suppose it is when the money runs out that is when it’s cut off comes in.
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.
Sarah is a hospital consultant and lives with her husband. Ethnic background' White British.
I mean I think the consultant would’ve let us carry on as long as we wanted to, because I think he so desperately wanted to provide us with what we want, you know, and, you know, you know, and he would forever tell me stories about people who have got an eighth of an ovary who managed to get pregnant and all this kind of thing. And again I think that really, I think we’d have welcomed a bit more direction, I think, I think may be doctors, fertility doctors have got to take a bit more responsibility, to, so people who really are poor, I guess there is a thing, they didn’t want to feel like they failed, they want to keep on pushing until they had got a successful outcome. But I think it is, yes, if somebody had told us to stop earlier it would have been quite nice to have the decision taken out of our hands. If somebody had said it is hopeless you should stop, that would have been in some ways quite helpful. But nobody knows, nobody knows, and I think, you do need, you know, all these things, you just need a little dose of luck don’t you and sometimes some people get it and some people don’t. And we haven’t had it so…
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.
Clare is married and worked as a mediation officer. Ethnic Background' White British.
I think, we had counselling, which I think is enormously important for both of us. We had it separately, and we had counselling together. And I think that helped us work through a lot of very mixed emotions. Anger, bitterness, heartbreak, sadness, fear. And then I think it’s just a matter of time. But obviously with the infertility journey you don’t have time, you can’t wait. I mean I’d quite happily wait another couple of years before we did it again. But I’m already 35 and there is that, that feeling of pressure, of thinking, “We do need to get started. We do need to get back on, you know, the roller coaster again.” But I think, I mean I went to see my consultant last week about, you know, just talking through some issues about when we could start again. I think we do just have to face up to the fact that it’s not going to happen unless we do another IVF cycle. And as much as everything could still go horribly wrong a third time, one thing that we can guarantee is that it’s not going to happen unless we actually go and do it. I mean, okay, so we did have the miracle conception in October. But that really was a miracle and we can’t wait for that to happen again. And I think that’s the only thing that we can really think about is that if we don’t ever try again, the only guarantees that the medical profession will have is that we will never have our own baby. So I suppose it’s just a question of trying to find that strength to, to carry on.
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”.
Mike is a school teacher, married. Ethnic background' White British.
Was it hard hearing that news last year...?
It was expected. No because of this back up plan. It would have been very hard if we’d you know, we hadn’t got anything else that would have been, you know, where do you go from there. Deadly silence and then what? So no that was really good. The way that we were presented with options in advance, and if I had to give advice to anybody on whatever on the website and things I would say make sure that you have a plan B. Don’t pin all your hopes on one thing and then say to your partner, oh well we’ll cross that bridge when we come it if it fails. Because you need to consider that, so straight away you have got a fallback position, otherwise your world will just drop out. And it will, you know, it will be an awful feeling and, you know, it will be something that will be terrible for you. So always, there’s usually always something to cling on to, a backup plan or something like that, until right at the end and its gets, by then you will be emotionally worn down anyway and then you’ll will just probably believe it’s all over. It sounds a bit, you know, fatalistic, but do you know what I mean?
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”.
Susan is a teacher, married with one grown up daughter. Ethnic background' White British.
It was very difficult to admit or to accept, you know that really the time had run out. Because when you are young, you just think as though you have got forever and you don’t realise how quickly those years pass. And I sometimes think well, you know, we should really have thought about it very much earlier but then it is easy to say that with hindsight. So... but yes obviously I really regret it and I get quite upset if I dwell on it, so I try to think you know well that is past now, you know we can’t change the past and several consultants have actually said that to me, you know, not just about the fertility but also about the disease and so forth. You know you can’t change that now. You know, you have got to sort of move on.
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”.
Maggie is a writer and marketing consultant. She lives in Ireland with her husband. Ethnic background' White British.
Making the decision to stop fertility treatment was a very very difficult one. We both really really wanted to have children. And I know that if we’d have had IVF, maybe there was a baby waiting for us at the end of it there. I think the difficult thing was there were no guarantees any more. I’d kind of imagined that once we’d been, had this meeting with the fertility specialist that he could almost wave some kind of magic wand. But I think because we’d tried fertility drugs and they hadn’t worked, we’d tried IUI and that hadn’t worked, there was no guarantee that IVF was going to work for us either. I think I’d, I’d started to realise the cost of having a baby to us on a kind of emotional and personal level, and for me physically as well. The drugs had taken their toll on me. I felt like a different person. And I really wanted to regain that sense of myself and, you know, the relationship that we’d had. It was very very, it was a hugely difficult decision to make because we did still want, badly want to have children. And I think that had been the thing that had kept me going through all of the, the fertility treatment, this kind of, a sense of, “Is this the only way I’m going to have a child?” And the fear of getting off the treatment roller coaster, because maybe there was a baby waiting at the end of it, that was very very scary. But I think we got to the stage where we thought, “Right, okay, we’ve been diagnosed with infer-, unexplained infertility. The treatment isn’t working. If we want, we can either carry on with this forever.” And, where do you stop? I mean you could have ten, twenty attempts at IVF and no one, people will just carry on taking your money. “And did we carry on like that until I hit the menopause?” Or did we say, “Okay, we’re going to carry, we’re, we’re going to put a line in the sand”? We were sick of hearing ourselves, kind of this self-pitying that had crept into our, the tone of all of our conversations. And we decided, “Right, we’re going to do, we’re going to take back control of this huge area of our lives, and move on and heal from this thing.” So that’s what we did.
How long ago was that? How many years ago was that decision?
It, it’s about five years since we made the decision to stop trying for a family. And the irony I guess is that not long after we stopped fertility treatment, I did get pregnant. I conceived naturally, but then sadly went on to lose the baby. I guess the sense of irony about that was just as we said, “Right, okay, we’re going to heal from not having children” this, the miscarriage actually gave me hope again. Because I was thinking, “Well, I’ve got pregnant.”
It took me a while to get back to this place where I was, you know, being, managing my expectations about having a child.
And have you questioned that decision in the years since then?
It’s funny actually, I never really questioned the decision that I made not to have IVF. I, you do hear, of course IVF does work for some people, but you do hear of so many couples for whom IVF doesn’t work, and also of the huge financial, emotional toll, toll that it has. And also the effect on their relationship. I actually did read a book not long after we’d made the decision about a woman whose marriage broke down under the stress of IVF. And I really didn’t want that to happen to us. First and foremost I wanted to be married to my husband. The, a baby would have been the icing on that particular cake, but I wanted to get back to kind of seeing our relationship as a cake in itself.
Age at interview:
Age at diagnosis:
Fiona is a part-time teacher. She lives with her husband and three adopted daughters. Ethnic background' White British.
There was also my Mum who had planted the seed of adoption. She knew friends who had adopted through the same agency, and she, she couldn’t bear to see me going through what I was going through. She herself had a child who died very early on and, you know, she just said, “Just don’t put yourself through it. It is just too much.” So she was quite kind of instrumental in helping me come to that conclusion.
And just at that time I think started to think, actually I do like just being back myself again and not constantly living my life waiting for something, you know, I think it was slow realisation. It didn’t come overnight. There were lots of talks, lots of sitting, wondering about it. But yes, it wasn’t a quick decision. It was a hard one. Because when you give that up, you really are giving up your birth child, and that takes a long time to come to terms with. I probably won’t ever come to terms with it actually. But, there you go.