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Clare ' Interview 03

Age at interview: 35
Age at diagnosis: 31
Brief Outline: Clare and her husband have had one cycle of failed IVF and a miscarried a baby conceived naturally. Clare is just about to embark on another cycle.
Background: Clare is married and worked as a mediation officer. Ethnic Background' White British.

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Clare and her husband started to try for a baby and assumed that it would happen quickly. She started using ovulation kits, but she became concerned when they showed she had stopped ovulating. Initially her GP was dismissive but when she saw someone else at the practice they referred her to the fertility clinic at her local hospital. As Clare was several stone overweight, doctors thought she might have polycystic ovaries. Messages were confusing, but she was told it was important to try and lose some weight before embarking on treatment. She went away and lost weight and went back to the clinic six months later ready to start. About 2 ½ years after they had started trying to have a baby, she started on Clomid, with high hopes. But she hyperstimulated on the drugs, and a scan showed that both her fallopian tubes were blocked, so she would need IVF. Clare and her husband were devastated as they felt that they had wasted lots of time (almost three years) to discover they would need IVF. Their first cycle of IVF resulted in her conceiving twins, but they quickly died in utero and she miscarried.  After a break, she started another cycle on IVF but things did not seem to be working as they should. A scan showed that she was in fact pregnant, in spite of the blocked tubes. But she miscarried again, which was a devastating blow. A laparoscopy showed that her tubes were very damaged, and the only option would be IVF. She was just beginning to talk to her consultant about embarking on a third cycle at the time of the interview.  

 

Newly married Clare assumed, like most people, she would get pregnant very quickly. After nine or...

Newly married Clare assumed, like most people, she would get pregnant very quickly. After nine or...

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We started trying for a family in April/March 2003, and like most people we assumed it would happen very quickly. We first suspected there might be a problem after about nine or ten months. I’d been using ovulation kits to test whether I was ovulating, and for the first few months it came up that I was ovulating fine and then suddenly it stopped. And that’s when we first began to realise that perhaps things weren’t as normal as they should be. We carried on trying, but I did go to my GP. And the first time I went to my GP I was met with quite a lot of resistance. He didn’t take it very seriously. So went away, sort of thought about it, tried again for another couple of months. Went back to see a different GP at the same surgery, a female GP, and she was a lot more sympathetic. And that’s when I got referred to the fertility clinic at the hospital.

 

Clare described the guilt she felt about the fact that all their fertility problems lay with her.

Clare described the guilt she felt about the fact that all their fertility problems lay with her.

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I think it has strengthened us, definitely. That’s not to say that it’s always been plain sailing. Because it hasn’t. And I think there have been times when it’s been incredibly difficult. I think particularly because for me I feel an element of guilt about the fact that the fertility problems all lie with me. You know, [husband]’s perfectly healthy and given he was with a partner who didn’t have blocked tubes or any fertility problems at all he’d be a father by now. And I think that’s very very difficult to come to terms with. And I know from talking to other people again, to the, the Infertility Network that where you have an element of, you know, there’s a definite problem on one side or the other, whether it be male factor infertility or something wrong with the woman, that there is always that feeling or often that feeling of guilt that they’re the one, that partner is the one that’s stopping the other one from having children. 

 

Clare had been trying to get pregnant for three years before a scan revealed a blocked fallopian...

Clare had been trying to get pregnant for three years before a scan revealed a blocked fallopian...

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We talked about what to do. I was still considerably overweight at the time, and we talked about the fact that I could go on Clomid and see whether that would sort out my ovulation, but that really I needed to go away and lose the weight. Which was quite daunting. As I say I was 5 or 6 stone overweight. It was quite a scary prospect to have to lose all that weight, and be losing more time as well. You know, we’d been trying for nearly two years by that stage. But we decided in conversation with each other and also in conversation with family and friends that it was probably for my health, the baby’s health and everything else, it would have, make more sense for me to actually try to lose the weight first. So I started a diet, a very strict diet in the March of 2005. So this is now two years since we’ve been trying. And I lost the weight pretty rapidly. And we went back to the clinic in September 2005 and said, “Okay, we’ve done it. We’ve lost the weight. You know, what’s next?” And my consultant said, “Well, that’s brilliant, you know, you’re halfway there basically. Here’s the Clomid. Go away and try. I reckon you’ll be pregnant by Christmas.” So we rushed out the clinic, absolutely thrilled. You know, I’d lost all this weight. This was the magic tablet I was going to take to make me ovulate and to get me pregnant. We started taking them in September and we had naively very high hopes that that would be it, I’d be pregnant on the first cycle. And it didn’t happen. October, took them again. It didn’t happen. The drugs were starting to make me feel quite depressed as well, so that was making things worse. Took them again in November. And during that cycle we actually decided that we weren’t entirely happy with the hospital, and we’d go and pay for a private consultation. And we went to our local private fertility clinic, which we’d, you know, never considered before, and were told that not only was my polycystic ovarian diagnosis completely incorrect, but the scan showed that the Clomid was hyperstimulating my ovaries and I was produce, producing far too many follicles. And the scan further showed that I actually had blocked tubes, and I wasn’t going to be able conceive on Clomid. It would have to be IVF.
 
So this was now November 2005. So, you know, three months’ short of three years since we’d started trying. And we were absolutely devastated. Just couldn’t believe that all that length of time, nearly two years, that we’d just wasted completely, being given one diagnosis, for that to be changed, for that to be found to be wrong again. And in actual fact it was all a total waste of time. Because we should have just been sent straight for IVF to start with, because that’s the only thing you can do when you’ve got a problem with Fallopian tubes. 
 
 

Clare lost a lot of weight before starting on clomiphene (Clomid) which she hoped would be a ...

Clare lost a lot of weight before starting on clomiphene (Clomid) which she hoped would be a ...

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Here’s the Clomid. Go away and try. I reckon you’ll be pregnant by Christmas.” So we rushed out the clinic, absolutely thrilled. You know, I’d lost all this weight. This was the magic tablet I was going to take to make me ovulate and to get me pregnant. We started taking them in September and we had naively very high hopes that that would be it, I’d be pregnant on the first cycle. And it didn’t happen. October, took them again. It didn’t happen. The drugs were starting to make me feel quite depressed as well, so that was making things worse. Took them again in November. And during that cycle we actually decided that we weren’t entirely happy with the hospital, and we’d go and pay for a private consultation. And we went to our local private fertility clinic, which we’d, you know, never considered before, and were told that not only was my polycystic ovarian diagnosis completely incorrect, but the scan showed that the Clomid was hyperstimulating my ovaries and I was produce, producing far too many follicles. And the scan further showed that I actually had blocked tubes, and I wasn’t going to be able conceive on Clomid. It would have to be IVF.

 

Clare talked about her anxieties about the drugs, were they working or not?

Clare talked about her anxieties about the drugs, were they working or not?

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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.

 

Clare had to overcome her fear of needles and was surprised to discover that egg collection...

Clare had to overcome her fear of needles and was surprised to discover that egg collection...

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I think it was probably more involved than I expected it to be. I didn’t realise I was going to have quite so many injections and blood tests and scans and things like that. And having to do daily injections and then twice-daily injections myself. I mean I think that’s one of the biggest things that I was terrified of, because I’ve got a real phobia of needles. And the thought of actually having to do my own injections, actually sort of press the button on the thing and stick it into me. Which for someone who’s got diabetes for example is not going to faze them in the slightest. But for me, who had a lifelong aversion to going anywhere near a needle, I just thought I wouldn’t be able to do it. The egg collection was very different from what I expected as well. And I think that again a lot of my friends really had no idea what was involved in that, until that programme was on just before Christmas, ‘A Child Against All Odds’. And they actually showed the egg collection on TV. And I had quite a lot of interesting feedback from my friends at that stage, saying, “I didn’t realise that was actually what it involved.” You know, I think they kind of thought they put a spatula in and just collected them all out or something. They didn’t realise it was actually a needle. And that was quite traumatic to begin with, because I was quite worried about sort of going in for an operation and everything. But it was actually, again it wasn’t as bad as I thought it would be. I was quite sore and a bit swollen and pretty tender afterwards, but it wasn’t as bad as I expected it. 
 
I think the absolute worse time during the whole cycle was the wait between the transfer of the embryos to find out whether you were pregnant. 
 
 

During the wait after embryo transfer, Clare monitored her every physical sensation as a possible...

During the wait after embryo transfer, Clare monitored her every physical sensation as a possible...

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I think the absolute worse time during the whole cycle was the wait between the transfer of the embryos and to find out whether you were pregnant. Because for sort of four weeks up until that stage, four or five weeks up until that stage you’d been doing something every day. You’d been remembering to take your tablets, have your injections, you know, do your jabs, make sure you go, go for your blood test, have your scan, have your egg collection. And then you were waiting to find out about your fertilisation rate. And then you go for your embryo transfer and they put the embryos back in. And then that’s it. And you’re just like, “And what do I do now?” And I mean some women do take injections and pessaries and things afterwards. But our clinic didn’t do anything like that at the time. And you do feel sort of very in limbo, as if you’re not really sure what you’re supposed to be doing. And just the whole two weeks when you’re just feeling every single twinge and every single pain. And any little bit of spotting that you might get, you know, “Is that implantation spotting? Or, am I, is my period about to start?” And, “Do my breasts feel different?” And, “Do I feel sick?” And just analysing absolutely every single symptom. Which if you conceive naturally you just don’t even think about. You know, you think, you make love in the middle of your cycle and then realise that your period’s a couple of weeks late. And you think, “Oh, I might be pregnant” and you test. Whereas with IVF you have, you know the exact time of conception. You know, those embryos were put back in at 11 o’clock on the Tuesday morning. And you know that exactly fourteen days later you have to take a pregnancy test to see whether you’re pregnant or not. And it’s a very very long two weeks, a very long two weeks. And I think that was the hardest bit. You know, the injections and the scans and everything else were quite stressful because there was no, so many stages during the cycle where things could have gone wrong. But I think it was those two weeks of just waiting and waiting and waiting and feeling every single pain and twinge and cramp in your body. And just reading every sign-, you know, some days you’re reading it all and thinking, “I’m pregnant. ” And the next day, you know, your symptom disappeared, or your stomach started to hurt and you were convinced your period was arriving. And the day after you’d feel differently again. And it was very very difficult, very difficult.

 

Clare was concerned about her weight. Doctors advised her to lose five stone and suspected she...

Clare was concerned about her weight. Doctors advised her to lose five stone and suspected she...

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By the time we got to see the, got to the clinic, it was about four or five months’ wait to actually get there. So by that stage we had actually been trying for over a year and still nothing had happened. At the time I was quite overweight, I was 5 or 6 stone overweight and I was concerned that that, perhaps, was causing the problem with my ovulation. We went to see the clinic, we saw one of the registrars at the clinic, and she said that she wasn’t sure whether it was polycystic ovaries, but she would test to see whether it was polycystic ovaries to start with, because that’s normally, being overweight and also having ovulation problem can be an indicator of that. So I was sent for blood tests and I was sent for a scan to see whether my ovaries looked polycystic at all. Those tests happened in April 2004 and went and had all the tests done, then went away to wait for our appointment to come back to be told what the results were. Then we got a letter through to say that our appointment would be November 2004 to actually be told what the results of those tests were. We were absolutely horrified. We couldn’t believe they were going to make us wait that length of time to find out whether I even had a problem in that respect. I did actually manage to go back to my GP, and my GP managed to get hold of the doctor at the hospital, or the records at the hospital and she was told over the phone that they’d, all the test results had come back clear and there was no problem. Which we were very relieved about. We were, you know, obviously it still didn’t mean that I was pregnant, but it meant that one aspect of the problem had been supposedly solved. So we had to wait for our appointment in November. We carried on trying. We didn’t do anything else. Still nothing had happened. We went to see the doctor in November. This time we saw the consultant rather than the registrar, and he told us at that appointment that I did have polycystic ovaries. So we were now utterly confused because we’d been told on the one hand that we didn’t and on the one hand that we did. And I was quite distressed because I felt they’d told us back in the summer that I didn’t have it, and I could have been doing something about it in that time. We’d wasted even more time. We talked about what to do. I was still considerably overweight at the time, and we talked about the fact that I could go on Clomid and see whether that would sort out my ovulation, but that really I needed to go away and lose the weight. Which was quite daunting. As I say I was 5 or 6 stone overweight. It was quite a scary prospect to have to lose all that weight, and be losing more time as well. You know, we’d been trying for nearly two years by that stage. But we decided in conversation with each other, and also in conversation with family and friends, that it was probably for my health, the baby’s health and everything else, it would have, make more sense for me to actually try to lose the weight first. So I started a diet, a very strict diet in the March of 2005. So this is now two years since we’ve been trying. And I lost the weight pretty rapidly. And we went back to the clinic in September 2005 and said, “Okay, we’ve done it. We’ve lost the weight. You know, what’s, what’s next?” And my consultant said, “Well, that’s brilliant, you know, you’re halfway there basically.

 

Clare described her two miscarriages, one after IVF and the other after conceiving without...

Clare described her two miscarriages, one after IVF and the other after conceiving without...

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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 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 going on?” And they said, that, you know, there was a possibility I’d developed a cyst and I needed to go in and see them the next day. Drove down to the clinic in complete silence. We were so scared about what was, what we were going to be told. And went into the clinic, the waiting room. The nurse came to get us and we went in for our scan. And while she was scanning me she said, “I’ve found something.” And we both sort of looked at the TV screen. And I mean I’ve never been able to work out what they’re looking at on the scan pictures. So I was just looking at this sort of blob and thinking, “This is a cyst.” And [husband] was thinking, my husband was thinking the same thing. And she said, “I’m going to have to go and get a doctor.” And then we really went into panic. We thought, “Maybe it isn’t a cyst. Maybe it’s a tumour or something even worse. And she came back and she said, “You’re pregnant.” And we were just absolutely stunned. And we had, you know, we had been through the scan that showed me that I had completely blocked tubes. When they did the scan back in January and put the dye through my tubes or into my womb to go into my tubes, nothing went through my tubes at all. They put as much dye as they possibly could, and absolutely not one drop went through. So we could not fathom how I had conceived. And it was, I mean it was nothing short of a miracle. And we were just stunned. And again, you know, back up into the, the heights of joy. We just thought this was amazing, this was absolutely amazing. After everything we’ve been through, we’ve managed to conceive naturally. And we left that clinic walking on cloud nine. Book, we were booked in for another scan the following week, on the Tuesday, to go back and check everything was okay and check dates and all the rest of it. And on the Monday I started bleeding. A huge, huge bleed. And the Tuesday we went back for another scan, and confirmed we’d lost the baby again. So that was really really hard. That was absolutely devastating. To go through two miscarriages in the space of six months was just, and to have had the joy of a natural conception taken from us as well was just absolutely crushing. And we found that very very hard to bounce back from. In fact we haven’t started another cycle yet. Because we’re still, we’re now into, what? seven, eight months from that second miscarriage. We still haven’t worked up the courage to do it again, because it was just so a-, well, devastating is the only word I can think of, just absolutely horrendous. We just couldn’t believe that we could have lost a second baby, or a third baby, because the first time we lost twins. So that was, yes, absolutely crushing.
 

For Clare, her sense of loss due to infertility is huge. She felt it was a grief that would never go away.

For Clare, her sense of loss due to infertility is huge. She felt it was a grief that would never go away.

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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 that’s gone and you can never get it back. So, yes, I think the, the loss is huge.

 

Clare would happily have waited another couple of years before trying another IVF cycle, but at...

Clare would happily have waited another couple of years before trying another IVF cycle, but at...

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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.

 

Clare found that although she was open with her friends about her IVF treatment only those who...

Clare found that although she was open with her friends about her IVF treatment only those who...

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But the problem is that IVF is so complicated, unless you actually have been through a cycle or know someone who’s been through it, most of the time the information that you’re feeding to your friends and family, they have no idea what you’re talking about. I remember the first time I came back from the clinic on my first cycle, and I’d had my scan during my stimming injections, and I had thirteen follicles. And I texted all my friends to tell them I had thirteen follicles. One of my friends, who had been through three cycles of IVF herself, texted me back and said, “That’s brilliant.” All the others texted me back and said, “What is a follicle?” And I think that really brought it home to me that actually there wasn’t really a lot of point in involving them in every stage, because they really had no idea what I was talking about. And I think one texted back and said, “Is that good or bad?” Because she’s got no, no sort of frame of reference. I mean if everyone else is getting three hundred follicles, then clearly thirteen is rubbish. But she had absolutely no frame of reference at all to understand what I was talking about. And I think at that stage I realised that actually it probably wasn’t really worth telling everybody. And I mean that was the brilliant thing about the Infertility Network, because of course I had a whole bunch of friends online who I could go and post in the chat room and say, “I’ve had thirteen follicles.” And they’d all come back and go, “That’s great” because they all knew exactly what I was talking about. So I think, in that respect I think we’ll probably keep it quite quiet. Not because we don’t want to involve our friends, but because there’s largely little point in involving your friends to that extent, because they probably won’t really understand what you’re going through and all the different stages. I mean possibly sort of at the, you know, after embryo transfer, when I can tell them and say, “Look, I’m waiting to find out if I’m pregnant or not” at that stage maybe. But even then they’re not going to get the, the depths of, of fear and the intensity of feelings that surround it, because they haven’t been there. And it’s very very difficult to understand unless you’ve actually been through it.

 

Although Clare used the Internet a lot for information and support, the amount of information...

Although Clare used the Internet a lot for information and support, the amount of information...

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I do use the Internet and I do search for different things to do with miscarriage and infertility. But I find it quite overwhelming, the amount of information you can often find there. And also the level of medical detail, that perhaps as someone who’s a layperson, who doesn’t, who’s not a doctor, I can’t always understand what they’re saying. And sometimes it can actually I think cause more anxiety than it actually allays. For example I’ve got a bicornuate uterus, which means that it’s slightly heart-shaped, and that can be a cause of miscarriage. But if you go and have a look on the Internet, it basically, you know, the, the scare stories about it are just manifold. And you could end up convincing yourself that if you’ve got a bicornuate uterus you’re never ever going to be able to carry a baby to term. Which isn’t the case at all. So I think that, I do look on the Internet and I do research on the Internet, but I always take it with a little bit of a pinch of salt. But if there’s anything that I find particularly interesting or particularly concerning, I’ll either go on to the forum and post on there and say, “Has anyone read this? And what do you think of it?” or I’ll print it off and take it to my consultant and say, you know, “I’ve read this. Do you think there’s any truth in it?” And I know doctors and consultants absolutely hate it when people go in with Internet printouts. Because the last time I went to see my GP with something I printed out from the Internet I could see her visibly sort of going uh. Because you just, they must get so sick of it, everyone diagnosing their own problems from things they’ve printed out on the Internet. But I just think that it’s often better to just have that second check with somebody who’s medically trained and medically qualified, rather than sending yourself into a complete spin because you’ve read something on the Internet that tells you that because you’ve got x, y and z you’re never going to be able to have children. Because sometimes it can be written from a completely different angle that you haven’t quite picked up on, because it’s a medically researched document or something and you haven’t picked up on actually that’s a research project about someone who’s got a condition that you don’t have. So I think, yes, the Internet is an enormous source of information, but I think it has to be used very carefully. Because otherwise it can just make you even more anxious than the whole thing does anyway.

 

Clare described an Internet fertility forum as “fantastic”. It has helped her “feel normal”.

Clare described an Internet fertility forum as “fantastic”. It has helped her “feel normal”.

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Tell me a little bit about the support that you’ve had from the Infertility Network.
 
It’s been absolutely fantastic. I found, I joined the Network about a year and a half after we started trying, and started posting maybe a year or so after that in the, the forums where there’s lots of different threads and things. If you’ve been into a Internet forum, it’s the very standard sort of forums. And you can just go on there and you can talk about absolutely any aspect of infertility at all. Whether it be a detailed question on how you should feel during your, your stimming drugs or how many follicles is a good number of follicles to get during IVF or, you know, how to cope with pregnant friends. What happens when you take Clomid? Or even going right back to the beginning, you know, what sort of initial investigations to expect at the fertility clinic. When I first joined I was still on the Clomid. And I was absolutely adamant I was never going to have IVF, because I had my Clomid, my magic tablet and I was going to be pregnant by Christmas. So why would I need IVF? And I would go on there and I would see all these women talking this very strange language about IVF, about EC and ET and down regging and stimming. And I had no idea what they were talking about. And I had so much admiration for them and what they were going through. And little did I know that only three months later I’d be there as well. And when I found out that I had to have IVF I was absolutely terrified. And as I said before I had nobody I knew who knew anything about IVF at all. And you can read it in books and things, but it’s not the same. And I was able to go on the forum and post every step of the way and say, you know, “I’m feeling like this today. Is this normal?” And people would come back and say, “Yes, of course it’s normal. You know, you’re feeling really emotional because you’re down regging. You’re crying every second. That’s absolutely normal. I felt exactly the same.” Or you’d post and you’d say, “Oh, I’m not feeling very bloated. I’m, you know, I’m stimming and everyone’s saying I should be, feel bloated.” And then a couple of other women would come back, “Oh, I didn’t feel bloated at all during stimming.” And you suddenly feel normal. You feel accepted. You can go on the forum and say, you know, “I’ve just walked past a pregnant woman in Sainsbury’s and I found myself standing in the, the fruit and veg aisle bawling my eyes out.” And everyone else would think, “Oh, that’s a bit of an overreaction.” The girls in the forum were just like, “No, I’m with you. I’ve done that, I’ve been there. I know exactly how you feel.” Or there’ll be an advert on the TV. I think there was an advert for the, a car, I can’t remember which car it was. Its strapline was something like, “There’s no greater adventure than having children.” And we were all posting on the forum that night, “Oh, isn’t that advert irritating. It’s so smug.” And again everybody understands how you feel. There’s no, you’re not made to feel like you’re overreacting, like you’re making a big fuss about nothing. There’s no kind of like, “Oh, get over it and move on” sort of impression. Everyone understands where you’re coming from, where you’re going to. And there will always be someone there who has had your particular problem or your particular diagnosis or your particular issue with the doctor or can gui-, you know, point you in the right direction with the right vitamin supplements to take. Or do you think your dose of Menopur is too high or you’re on too much Buserelin? Or do you think I should ask my doctor to do x, y, z? And they will come on and give you advice. The, the miscarriages again, people will say, you know, “Have you considered this? Have you tried those? Have you thought about doing this? Have you asked your consultant this?” And there is just so much information and advice on there. Just, and that’s just from the, the other women who post. That’s not even from the charity itself, which in itself is a wealth of information and advice. So it’s an absolute lifeline, it really is. It’s fantastic.
 

Clare and her husband had counselling together which helped them come to terms with infertility and their different reactions to treatment failure and miscarriage.

Clare and her husband had counselling together which helped them come to terms with infertility and their different reactions to treatment failure and miscarriage.

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I think it has strengthened us, definitely. That’s not to say that it’s always been plain sailing. Because it hasn’t. And I think there have been times when it’s been incredibly difficult. I think particularly because for me I feel an element of guilt about the fact that the fertility problems all lie with me. You know, [husband]’s perfectly healthy and given he was with a partner who didn’t have blocked tubes or any fertility problems at all he’d be a father by now. And I think that’s very very difficult to come to terms with. And I know from talking to other people again, to the, the Infertility Network that where you have an element of, you know, there’s a definite problem on one side or the other, whether it be male factor infertility or something wrong with the woman, that there is always that feeling or often that feeling of guilt that they’re the one, that partner is the one that’s stopping the other one from having children. I think also the other time that we really hit problems was after the first miscarriage, because we treat, we responded to it very very differently. And I think that was why it was so important for us to go to counselling. Because I fell apart, and [husband] didn’t. And that was quite difficult because I felt that he wasn’t as upset about it as I was. Whereas in actual fact he was just dealing with it in a completely different way. And also he felt that he needed to be strong for me, and that there wasn’t space in our relationship for both of us to fall apart and that he needed to be the strong one. And I found that very hard because I felt that he was just kind of putting it, you know, “That’s in a box and I’m going to pack that up and, you know, it’s all over now. There’s nothing we can do about it, so what’s the point getting upset about it?” And that’s not how he felt at all, but that’s how I felt he was behaving. And so I think the counselling was absolutely vital at that stage, for both of us to understand. And it was very hard. You know, he, we both said a lot of things during the counselling session that were very hurtful to the other one. But because we were able to deal with that in the safe environment of a counselling room, rather than a sort of slanging match in the middle of your lounge, I think that was very positive. And I think now we are in a very positive place in terms of our relationship, and we are incredibly strong. But I’m sure there’ll be times when we’ll be tested again, when we’ll, particularly, you know, during the middle of an IVF cycle when I’m taking drugs and, you know, very hormonal and very irrational and just picking fights about the most stupid little things, just because I, I’m not coping or I’m not coping with the stress. And it is very difficult. But I think, you know, in terms of testing your relationship, if you can get through this, you can get through anything.

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