After the highs and lows of an IUI, IVF or ICSI cycle, receiving the news that the cycle has not worked can be a devastating blow. Here we discuss how people reacted to a failed cycle, a miscarriage after fertility treatment or an ectopic pregnancy.
Getting a negative result
Women and men described the two-week wait for the results of their fertility treatment as one of the hardest parts of treatment (see Difficult parts of IVF & ICSI treatment). They were often extremely anxious to find out whether their treatment had worked, especially if they saw it as their last chance. People found the wait particularly nerve wracking as they knew exactly when their baby had been conceived and what day they could find out if the pregnancy had worked. They often analysed every sign and sensation.
Saskia is a teacher. She is in a civil partnership with her lesbian partner, and they have two daughters. Ethnic background' White British.
When we got that first, I mean the second IVF, when I got the positive pregnancy test and it was all fine, you know, I’d got proper hormone levels. It all looked great and I was very suspicious, I couldn’t believe my luck. I couldn’t believe it had happened perfectly the second time and I didn’t feel pregnant, whereas the time I’d fell pregnant, I’d had loads of pregnancy symptoms straight away. And I didn’t with that one. I felt very suspicious. I can’t put my finger on it. So when we had the scan, and it didn’t look good. I think I can only add I suspected something was funny and I was kind of, well it sounds funny.
I went in every other day for about a week and that was a really long week. But it kind of, we gradually realised things were going not well. It wasn’t….
So it wasn’t that, it wasn’t that bad. It wasn’t I don’t think as bad in a funny way as a flat negative. I can’t really explain why. And the fact that it had implanted and all that made me feel quite positive about the next time. You know, and then it worked the next time, so it wasn’t…. Well may be I’m kind of forgetting how sad it was. Because I do remember crying. I do remember being really upset. But then that’s how I was with all the negative ones, so I don’t think, I don’t think it was that much worse than a negative, even though obviously I’d had the initial positive, but ….
Fiona’s first cycle of IVF was cancelled before egg collection because the drugs had not stimulated her ovaries. She found it “absolutely horrendous”. Carol said she could feel her hormones drop after the first week and would know in her heart that the cycles hadn’t worked. Although she put on a brave face, inside she “died a thousand deaths”. Saskia and her lesbian partner had had one daughter through IVF and were very disappointed when their second IVF cycle failed. However, they were positive that at least the embryo had implanted and treatment might work well next time.
Michelle is an insurance manager and lives with her husband (Brian - Interview 22_. Ethnic background' White British.
So describe to me what the treatment was like?
It. When we first went for the appointment to get all the injections and that it was really exciting and it was such a positive move. And you think well it’s finally going to happen. And you get presented with this big box of needles and you think, oh my god. And [husband] had his crash course in how to do my injections. And it was ok to start with because you go away and you’ve got your injections to think about every day and you have to have them at the right time. You can’t have them late. You’ve got to keep them in the fridge.
And then after a few days I started going black and blue with all these bruises and I was thinking it doesn’t matter. It’s going to be perfect. And you carry on with it and went back for our scan and they said, ‘Oh we expect you know, to have about ten eggs’. And I’d got five and that’s a bit of a shock. I cried a lot then in hospital. It’s not as if it’s my fault and I’d done something wrong. And they said we’ll change your dosage of your injections.
And then going back in to have the egg collection frightened the life out of me. I’ve never been put out before and I was convinced that I would be able to feel them doing everything and I wouldn’t be able to speak. And I can remember coming around in this room. Them giving me the injection to start with thinking, that’s not going to do anything. And then hearing them say my name thinking I knew it wouldn’t work and having this pain and thinking, ‘Oh they’ve done it,’ [laugh]. That was quite painful afterwards, very, very sore and very sensitive. And then you don’t sleep because you’re waiting for the phone call next morning to hear if, you know, the eggs have taken. And then you don’t sleep the next night because they ring you every day to tell you how they’re doing. And then we had, I had them collected on the Friday and we went back in on the Monday and they said, ‘Would you like to see under the microscope?’ And it’s amazing to see them. Oh that could be our children.
So you sat and leant over a microscope and looked at them?
Yeah. And I saw them before they were put back. And they were gone. [Ha] it’s...
So how many did you have put back?
Two. We had two put back.
And then you had to go and wait two weeks?
Two weeks, two very long weeks. Before we’d had to think about the injections every day and it’s sort of, oh tomorrow I’ve got an appointment and the next I haven’t but another one after that. It was just two weeks of nothing. No appointments, just waiting. And it’s just like a lifetime.
I was all ready with our pregnancy tests and I had a show of blood the day before and at work I was just numb. And they said, oh no you’ll could still be pregnant. You just need to go home, put your feet up. Do take your pessaries.
That was a right performance. And you’ve. When they say to you it doesn’t mean you’re not pregnant, you could still be. In the morning you think, ‘I’m ok.’ And you don’t sleep and then we did two tests next morning and I can remember doing it and getting back into bed and waiting for [husband] to come back in the bedroom and tell me. And he was crying. So. I can remember having to ring my Nan. We’ve done a test Nan and it hasn’t worked’. She said, ‘Oh you don’t want to take no notice of those new test
Age at interview:
Catherine is a writer, married with two children. Ethnic background' White British.
Some people, some people like to take that time off work. But I actually found working in that thing, in that bit of time was the best thing that I could possibly do, because it was the only thing that actually distracted me and it did mean that I had to focus on something else and think about something else. I think if I’d been at home in that bit of time I would have gone completely bonkers, because I wouldn’t have thought about anything all day long and all night long other than whether it had worked or not. And our first treatment cycle didn’t work, it wasn’t successful. And initially I was, I wasn’t too bad about it. I just kind of thought, “Oh, well, it hasn’t worked. That’s it and, you know, get back on with things.
Then it was a few days later that it actually really hit me that, you know, this was our only way of having a baby, this was our last chance. And if this kind of hi-tech thing didn’t work, then maybe nothing would ever work and maybe I’d never be able to have a baby. And I was just, I went through a phase of just being completely devastated. I really couldn’t cope at all. And I think sometimes there’s not enough support during that time. Because after unsuccessful treatment is probably the time you most need counselling and help. And the clinic did say, “Oh, you know, you can come in and talk to us” but they left a gap of a few weeks before I went back. And it was just a really really horrible time actually, really horrible time.
Fiona’s fertility treatment did not work and she and her husband went on to adopt three sisters. However, the failed treatment had a devastating effect on her. She was very depressed and developed anorexia but found the adoption process very healing.
Fiona is a part-time teacher. She lives with her husband and three adopted daughters. Ethnic background' White British.
It took a massive toll on me. Absolutely massive. I stopped eating. I got very depressed. I thought I was doing really because I decided that I wanted to be in control of things. I have learnt this since, but at the time I didn’t really realise. I started to want to get fit, and go to the gym, and I think what I was doing was trying to get control of my body, because somebody else had been in control of it, and my body had been doing things I couldn’t control.
And so, I went completely doolally and became very, very thin and stopped eating altogether and very obsessed with weight, very obsessed with, well what I thought was healthy, and ended up having to have treatment for anorexia. Which was awful. And somewhere I never, ever thought I would ever be. But I couldn’t help it at the time. I had loads and loads of counselling. I had cognitive behavioural therapy in the end at a specialist hospital in the City.
And I have had another bout of that once since, three years after having the girls, and again I think that is the reaction to chaos [laughs]. But I am alright now.
But I think it had a massive effect. We always kind of say that before we went through the infertility, kind of, not just the IVF, but the whole prospect of never having your own children, I was perfectly happy go lucky, normal, you know, I never had depression, I never had anything.
And then this came along and I seem to have suffered [laughs] ever since. Which is quite …It is quite a shock and I can talk about it now, but it took me years before I could, you know, face up to any of it really. And I can remember, I go to church. I can remember sitting in church thinking if I can’t have my own children, I don’t know what I will do. I remember just saying in the church. “What are you doing to me? This is …”
And I have got five brothers and sisters who have all married and had children like that [clicks fingers]. I have got fifteen nieces and nephews, so I felt very isolated and very odd one out, and very why me? And that was awful. That was very painful. They were all having babies, and everybody else tiptoes around you doesn’t dare tell you they are pregnant, you know, and all that kind of thing you have to deal with, and you don’t realise, but it actually just chips away at you all the time.
No matter what the cause, the loss of a pregnancy was a massive blow for the women and their partners. Anne had secondary infertility. When she did finally conceive she suffered two delayed miscarriages that she found “horrible”. Although they were diagnosed with infertility, some of the women we spoke to managed to get pregnant without medical intervention. Not long after she had given up on treatment, Maggie was delighted to find that she had conceived without treatment but sadly she miscarried.
Maggie is a writer and marketing consultant. She lives in Ireland with her husband. Ethnic background' White British.
Not long after we decided to put an end to fertility treatment I did find out that I’d got pregnant naturally. And as you can imagine I was just so delighted. It was, I re-, I couldn’t believe it. I remember taking a photograph of the pregnancy test and looking at, up there on the camera thinking, “Oh, the camera never lies.” It was so hard to get my head round the fact that just literally months, weeks after stopping fertility treatment I’d got pregnant. I think I never imagined that life would be so cruel as to let me miscarry that baby. I’d told my friends and my family when I, it was still very early days. And I just, I really wasn’t prepared to have a miscarriage. It was, I, I’m not sure you ever could be. But I guess I just thought, “I’ve had my share of traumas. Now it’s my time to be happy.” And we were absolutely delighted. But sadly that pregnancy wasn’t to be.
We’d actually, I’d actually noticed, one day I’d, I hadn’t felt very well, I felt quite, very very tired and just ill. It was hard to put my finger on how I felt, but I, I just felt generally unwell. And I noticed there was a kind of discharge, a kind of brownish discharge. And I remember phoning NHS Direct and asking them about this, you know, “Was it anything to be concerned about?” And they said, you know, “Keep an eye. You know, if, if it gets worse then of course see your GP. But the thing that you need to worry about is blood. If you see fresh red blood then, you know, do start to worry kind of thing and seek advice.” So we’d arranged to go out for a meal with some friends that evening. And I thought rather than sitting in and brooding about what this could or couldn’t be that I would carry on and go out for that meal. I went to the loo and there was blood. And I was just, I didn’t know what to do. I, there, it, there wasn’t much blood, but it was blood and it was very very bright. So I kind of went and sat back at the table, I tried to carry on as normal. But then I thought, “Right, one more check, then I’m going to relax and enjoy the evening.” I went back to the loo and then there was quite a lot of blood.
So we had to go to hospital. We decided that that would be the best thing to do. It was the weekend, our GP would have been shut, and I needed some kind of reassurance. We went to a fairly small hospital close to where we’d been, just to get there quickly, and, but they didn’t have a maternity unit there, which was where I needed to be. So I ended up having to be transferred via ambulance to another hospital. And that did feel very traumatic. I remember lying there thinking you know, kind of hurtling through the streets, and it started to feel very very serious. For, not for the first time I began to cry. And I remember a nurse saying to me, “Why are you crying?” And I just thought, “God, you know, because I’m about to have a miscarriage. Why do you think I’m crying?” And there was such a lack of understanding about, you know, what I was going through. My husband had to follow the ambulance in the car. So it, it did start to feel very very dramatic. It was like something you see on the TV and, you know, I just wasn’t prepared for this at all. We got to the next hospital and this, at this stage it was kind of the middle of the night, because we’d been waiting in Casualty at the first hospital for a good while, with blood kind of, you know, a fair amount of blood. And I remember sitting in these waiting rooms on these plastic seats thinking, “Oh, God, I’m going to have to stand up and there’s going to be all blood on the seat.” And my husband actually asked them, “Could we be moved to a private room to wait?” And they we
To miscarry after IVF treatment was a huge blow. Clare and her husband had been trying for a baby for three years when they started their first IVF cycle. The first scan showed that she had conceived twins but they had both died. She then got pregnant without medical intervention, but again miscarried.
Clare is married and worked as a mediation officer. Ethnic Background' White British.
So in the February 2006 we started our first IVF cycle. Absolutely terrified. My cycle just happened to coincide with us having to do our first injection on our sixth wedding anniversary, which was not the most romantic way to spend your wedding anniversary. And we were very very nervous. We didn’t know what to expect, we didn’t know how we were going to react, how we were going to respond to the drugs. In actual fact I didn’t respond too badly to the drugs for the two weeks that I had to do what we call down regulation, which is just switching all the hormones off. I didn’t get all the headaches and side effects that I’d been warned about. But that in itself became an area of anxiety, because I was concerned that I wasn’t getting all the side effects and the drugs weren’t working. But I went for my down regulation scan and blood tests, and they said, “No, everything’s fine. You, you know, everything’s switched off.” Then I started the stimulating drugs. And again I didn’t get many side effects. And again I’m worried about that that meant that I wasn’t stimulating properly, I wasn’t getting enough follicles or wasn’t getting enough eggs. But that proved to be wrong as well. And I did actually end up getting nine eggs at the egg collection stage. Which is about right, about average. We had a fairly good fertilisation rate. We had six eggs that fertilised. And we got, so we got six embryos. Two of them didn’t survive the night. Which is not uncommon. Two of them were implanted, and two of them were frozen. And two weeks later I found out I was pregnant. Which was just absolutely amazing. And we just couldn’t believe our luck that, you know, we’d hit jackpot on the first cycle of IVF. We felt absolutely elated, shared it with all our friends, our family, work colleagues. And three weeks after that we were booked in for a scan to go and find out, you know, whether I was expecting one or two and check everything was okay. And two days before the scan I started spotting. Only a tiny amount, but enough to make us very scared. Went down to A & E. You know, they told me to go away and rest. I mean they were very very compassionate about the whole thing, but there’s not an awful lot they can do. They said they could book me in for a scan. But I was only two days away from having the scan at my clinic anyway. So we went to have the scan, that was April 2006, and were told that we had conceived twins but that they had both died and we’d lost them both. So that was just devastating. We could understand what they mean by the infertility roller coaster. Because we’d gone down to the depths, up to the heights and then right back down to the depths again. So that was very very hard. It wasn’t what we’d expected. We hadn’t thought about miscarriage. We just assumed that having been dealt such awful hands, you know, in terms of the infertility, that we would be spared the agony of miscarriage too.
So we took the summer off, regrouped, sort of built up our strength, lost a bit of weight, got fit, went on holiday, and decided to go back and tackle another cycle in the September/October time of 2006. And started doing down reg injections again at the beginning of October. Two weeks into down regging is when your period is supposed to start, and mine didn’t start. So this was a further concern. We were just completely thrown. “What on earth was going on? Why had this happened?” And we looked up on the Internet, like you do, and found all these horrendous things that it could possibly be. The main one being potentially that I’d developed ovarian cysts, which can be a side effect of the down regging drugs. And we sp-, I, eventually after a week of waiting for my period I phoned the clinic, completely beside myself. “What on earth was g
Some of the women we spoke to had experienced an ectopic pregnancy (which is where the pregnancy lodges in a fallopian tube rather than in the womb). This can happen either as a result of a natural pregnancy or a pregnancy after fertility treatment. The experience of an ectopic pregnancy can be frightening, requiring emergency surgery to remove the embryo. The loss of a fallopian tube may also further reduce fertility.
Many women talked about the grief they felt after a failed cycle. They were grieving for the potential baby they had just lost, but also for the loss of their expected future as a parent and family. Maggie described each month that passed as a failure and kind of bereavement. She was grieving for the loss of the life she and her husband imagined they were going to have together. She appreciated it was hard for people to understand.
Liz’s treatment was finally successful and she had one son. But she described the grief that she, and everyone around her, felt when her first cycle failed. Clare found that her grief started very early on, and carried on through her failed cycles and miscarriages. She doesn’t feel she will ever forget the grieving and loss.
Liz is a midwife. She is divorced and has one son. Ethnic background' White British.
Because of the ups and downs I think. The ups and downs of it all. Because one minute you are absolutely, you have the hope of it is the best place, there is, you know, and then the down of it is not happening, it is either not going to happen, you have failed, you now the emotional ups and downs are terrible. But the fact is that you feel that because there are other people around you are letting everybody down. It is not just yourself, you are letting everybody else down. And the other thing that I found very difficult was that when you felt that you had let them down and they were saying you haven’t let them down, you still feel like you had, but also you are trying to cope with their grief as well. It was like a domino of grief, everywhere. I did say domino grief, yes it was. And it was everybody else around me, felt sorry for you and wanted to help and support you, but you wanted to do the same for them. In a funny way, as well, so it was the whole ups and downs. Yes definitely the ups and downs of it all, emotional trauma.
Grief is a funny word to use isn’t it? For…?
I think it is right though. I tell you what I did feel like, when they there is two things I felt like. The second time when the egg didn’t fertilise and we couldn’t obviously, and then when the fourth embryo wasn’t suitable for treatment I felt like our babies had died. And that again is absolutely, totally irrational, but I mean they weren’t babies at all, they were nothing. I mean they weren’t anything were they? But I did feel like it in those labs were my little babies that had died. And the same with the two that didn’t make it. You know, the same again, I had visions of them just sort of like slipping out and trying to hold on and things. Weird dreams and things like that, you know, of trying to sort of come to terms with it. And that is why as soon as you get pregnant, got pregnant I felt like even though it was a ball of cells that, you know [son], I didn’t know it as [son] then, but it was my little baby, you know, and I think it becomes exacerbated, the feelings, I think, I am not sure if that is true or not. Because I haven’t really talked about it to someone who has just got pregnant on their own. But the feelings for the ones that did and didn’t make it, I think are amplified. But there is a feeling of grief, about, it being something has died and that sort of thing. I felt like when me Dad died that sort of thing. It is the same feeling definitely. Although nothing has actually died, there has never really anything been there. Do you know what I mean?
Age at interview:
Age at diagnosis:
Clare is married and worked as a mediation officer. Ethnic Background' White British.
I mean the grief starts very early on I think, when you find out that you have to have fertility treatment. I think even before you start the infertility treatment. It’s not just kind of the grieving that we’ve done since the miscarriages. We, we haven’t had a failed cycle, and a lot of our friends have had the grief of, of going through the whole IVF cycle and getting nothing, getting to the end of it and getting a negative result. But I think even going right back to when you first find out that you have a fertility problem and you’re not going to be one of the majority that just, you know, goes to bed and makes a baby, I think there is an enormous amount of grief there in dealing with a loss of something that’s, that, you know, as I say should be so natural and so special. And I think for, particularly for the person, the part-, member of the, you know, the couple, the, the man or the woman who finds out that it’s potentially their fault is a very loaded word, but their problem that is causing that, there’s a lot of grief around that as well. I think it’s, it’s coming to terms almost with a loss. You know, it’s a loss of your ability to conceive in the way that everybody else takes for granted. And then you’ve got to come to terms with having to actually go through an IVF cycle. And then of course we had the grief of the loss of the, the children we conceived through the IVF as well. As I say we haven’t even encountered the potential loss of a cycle that comes to nothing, that is negative. And we have friends who’ve been through countless negative cycles. And the depths of loss there as well just must be horrendous, and misunderstood I think. People think, “Well, you’ve done an IVF cycle and it didn’t work. But where’s the loss?” But what they forget is that every IVF cycle creates embryos. And to, to the IVF patient those embryos are the beginnings of a baby. And even if they don’t implant, even if that cycle comes to a negative, those women and, you know, those couples still do talk, or some of them do talk about those, those lost babies, those babies that have been lost, that were never implanted, that never grew into anything, never developed into a child. But there’s still that constant sense of loss. So I think the, the loss in infertility is huge, and ongoing. It’s like a bereavement that never ends. Because as with, you know, with most bereavements, you have the bereavement, you go through very very huge depths of grief and anger and sadness, and then gradually you start to rebuild your life and start to move forward. But with infertility there isn’t that ability to move forward, because it never stops. It just goes on and on and on and on for years and years and years. And obviously at some stage it has to either come to an end in terms of, either you’re successful in completing your family, or you have to draw a line in the sand and say, “We’ve had enough and we can’t do this anymore.” But I think, either path I think you will always be left with that grief. I think even if we are successful and we do have a family, I don’t think we’ll ever really, well, we won’t ever forget what we’ve had to go through to get that family. We won’t ever forget that we’ve had all these years of our life kind of taken from us because of the infertility, and because by now we should have completed our family, we should have had at least two or three children. You know, we were planning to have a big family and we wanted them quite close together. So in four years we could easily have had, you know, I probably would have been pregnant with my third baby at this stage if everything had panned out the way it should have done. And that’s hard to come to terms with that grief. It’s hard to come to terms with the thought that all
Ways of coping after a cycle fails
Women described different ways in which they coped after a cycle failed. Carol said she put on a brave face, but felt as though she was dying a thousand deaths inside.
Sandra is a nanny, living with her husband. White British.
Oh, yes, I have felt really, and I think I said before I tend to shut myself away. Because that’s just how I deal with it. I don’t want to inflict my misery on other people.
I just find it hard to see other people at that stage. So I, you find that you’ll do what’s best, what works, and I find that that’s what I need. I just need a, two or three weeks where I can just get over it in my time, and then gradually open up.
Obviously it does affect him, it does affect him. And we’ve both cried obviously. But he is stronger, he can go back to work. And I think it’s just men in general don’t talk as much about things, do they? But when I’m ready I do, I talk to my friends, my family about it when I feel I can without constantly crying. But initially that’s what I do, I tend to just, I need that time just on my own, just to recover. People are different. Some people I guess can bounce back and it’s just, and, and perhaps work, they can, work can swallow them up and they cannot have to think about it. But everyone’s different. But that’s how I deal with it.
Age at interview:
Age at diagnosis:
Naomi is a project manager, married to Martin (Interview 29). Ethnic background' White British.
Then obviously it’s the huge stress about how many embryos there, are fertilised over night, are they going to survive the two days to transfer? Or the five days to blastocyst as in our last case. And of the two week wait is just hell, it is like you know, the two week wait, when you are just trying naturally. But times by a thousand, the investment financial, emotional is just huge. And you analyse absolutely everything. Everything that could possibly be… a pregnancy symptom or a period symptom gets analysed. You just obsess about it constantly. And then obviously when it doesn’t work it’s just devastating. It really is.
And it takes a long time to recover from a failed cycle actually. What people don’t realise unless they have been through it, its grief. You are grieving for the babies that, you know, I suppose in its basic term we produce embryos, we produced what had the potential to become our children and on our first cycle we may even have named those embryos. We even had a little picture of them stuck to the fridge. We thought about them as our real, as our real children, and when they don’t make it, there is a real grief that you feel and you have to acknowledge that and give yourself the time to grieve for them before you are going to be anywhere near capable of moving on to do it again.
So it’s incredibly emotional. But it’s always described as a rollercoaster. And it’s so true because it is just highs and lows constantly. Sadly quite often a lot more lows than highs.
Did you know that when you went in?
We had been told it. Whether we’d listened or not is probably different. You always, everybody always says, oh it is a complete emotional roller coaster, but you don’t expect it to be as bad as it is, you don’t expect it to be as painful, emotionally painful. Certainly I didn’t, I never ever expected a failed cycle to hurt in the way that the failed cycle hurt. It was awful. Absolutely devastating.