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Martha ' Interview 16

Age at interview: 34
Age at diagnosis: 30
Brief Outline: Martha suffered from secondary infertility. After she had her daughter it took 4 years to conceive her son. She needed IVF.
Background: Martha is an American writer, living in Scotland. She is married with two children. Ethnic background' White American.

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Martha got pregnant quite easily with her first child. When her daughter was 14 months old, she and her husband started trying for a second child, but nothing happened. After 6 months she started to worry but waited until a year before going to see her GP.  They were told that they would have to wait two years before referral, but she managed to persuade them to start with a few hormone tests.  She was finding infertility very difficult to cope with, and so after a few months more went for some private investigations. Her husband’s work insurance covered their initial tests, although not the fertility treatment itself. The tests could not find anything wrong, so Martha was given the diagnosis of unexplained infertility. At two years after starting to try for a child, they went to see a private clinic about IVF, and still had to wait a further six months to be seen. In the meantime they tried Clomid, which gave Martha horrible side effects, and did not work. At the clinic they initially tried IUI, but she hyperstimulated. They next tried an IVF cycle, but Martha was put on the same dose of drugs, and hyperstimulated again. However, doctors decided to collect some of the eggs and fertilise them, and then froze them. They had to wait a few months for the hyperstimulation to abate, and then got pregnant with their son with the first frozen embryo transfer. 

 

Martha felt that her GP did not give them enough time when she went to see him with concerns...

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It was a him. And I have to say he is really great. He is one of our, you know, favourite doctors. But through that, I was kind of surprised actually that he was as offhanded as he was about it. Because he was another one, who just said, “Oh well. You have already got a child.” You know, “It is obviously just going to happen. It is just taking a bit more time. Ra ra ra.” And he also, you know, he did say, somewhat apologetically you know, “Oh well it is two years before we will do anything anyway.” And… I guess he probably, I can’t remember if it was that first visit as well or whether I went back again. That was when he said, “Well we can do some sort of ovulation tests to make sure, you know, but that is all…” You know, but it was very much like, oh kind of, “Why are you here?” You know, “You already have a child so obviously you can. You are taking up our time with this.” You know, kind of thing.
 
Which must have felt awful?
 
Yes, especially when you go in there thinking okay I have waited my year. Finally they are going to do something. And then you are told, no go back and do it and for another year. 
 
I don’t know whether anybody, I don’t know whether it is because GP’s probably aren’t exposed to it very much or whatever, but having said that when we were sent to the OBGYN, what you call it, the gynaecologist who is connected with our practice for those tests. I mean he was exactly the same, and so I mean I would like to write it off and say the GP’s just don’t have the experience, but then he probably does and he said the same thing. The kind of why are you here, you have already got one, you know, there shouldn’t be a problem, kind of thing. And I think that I was just, you know, sort of shocked that they could overlook how completely destructive this was, you know, for all of us in the family and to an extent, you know, beyond it as well.
 
 

Martha had conceived easily with her daughter but had difficulty when she started trying for a...

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Well I had my daughter with no problem, I got pregnant with her quite easily and when she was about fourteen months old we started trying to have a second one. And, [exhales breath] well it became clear quite quickly it wasn’t going to happen as fast as it had with her, but you know, you sort of think, okay, well [little laugh], you know, just carry on with it and whatever. I mean I think probably people have told you this before, I mean everyone says oh you shouldn’t worry until it is like this long or whatever. You do start worrying, you know, after just a few months especially if it has been quite easy. And I would say by six months into it and nothing was happening I was really, getting quite worried about it, and so what I had heard was that you are supposed to wait for a year, you know if you are the age that we were then and so after a year I went to the GP and I still find it quite shocking because I have not heard of another place where they say this, but here they will tell you oh no, we won’t do anything till you have been trying for two years which just seems like a really long time. And when I kind of pushed that, what they said, is the reason why, some, I can’t remember how the percentages break down but they decided to on this thing that something like 97% of people do manage to get pregnant within two years. But if you actually look at that it is like sort of 89% of what they were in the first year and then this tiny little percentage in the second. So I think it is a bit of a strange way of going about it, but that is how they went about it.
 
And so, well we, you know, I guess at that point, I think at that point I talked the GP into getting a couple of sort of simpler tests like hormone tests and whatever, and, I had those done and they looked normal so everyone was kind of, you know, well go away, and whatever. Do you want me to keep going?
 
Yes. That is great but carry on.
 
Yes. And so it was probably, I lose track of the timing of this, but it would have been a few months after that that I just finally decided I couldn’t really cope with it. I mean because I am sort of glossing of the whole fact that this is incredibly, you know, difficult to deal with for everybody. While all of this was going on.
 
And so we decided to go and get some private investigations done and I should say that we were probably in a better position than a lot of people who do that because my husband gets private health insurance through his work and I am on it, which means that they don’t cover, they won’t cover fertility treatments, but they will cover investigations, which means things like, what I got was a laparoscopy and that would, you know, if you had done that privately it would have been sort of £2,000 but we didn’t have to pay for it, so that, it made a big difference in terms of being able to go a bit more quickly than the NHS would have had us go.
 
So we went and did that and by then it would have been probably a year and a half with still nothing happening and so we went and did that, you know, go and got some tests, and we got the tests you would get really, and nobody could find anything wrong, you know, it was unexplained infertility. 
 
 

Martha found that people couldn’t really believe there was a problem with her fertility because...

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Well it was horrible. It was completely awful. And I mean I am not someone, I suppose I am not someone who deals with uncertainty very well anyway. And I think that just really pretty quickly into it, it got to be quite a big thing, especially for me, you know, to have people saying, “Oh well.” This is the thing, as everybody, especially as you have got one. Everybody’s reaction is, “Oh you have had one. There is nothing wrong.” You know, and they somehow assume, may be this is putting too much on people for me. But to me it felt like people somehow assuming that you must be doing something wrong. Because there is no way that this couldn’t be happening because you already have a child. So yes. So I mean it is not only that it is sort of a problem for what going on for you, but you are not getting an awful lot of support, at least I wasn’t from, you know, anybody else either, so… yes.

 

It was difficult to go through infertility treatment while also looking after a young child.

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Well yes, I mean certainly once that was going on, that was really, really, really, horrifically difficult because for us, [hospital] or any place. Basically when we came to choosing a place to go. The hospital in [city], it actually doesn’t have the best reputation around here for infertility treatment. They wouldn’t do IUI which is what wanted to begin with. They would only do IVF and for that even for a private patient there was a two year waiting list. So, I mean we weren’t going to do that and then it was either [city] or [hospital] and they are both two hours away. So you know, I was looking at these four hour round trips, you know, several times a week, trying to find… I never wanted to bring her with me. That was something I just felt like, this is not her problem and I really… I mean I did see people in there with small children, but I also would have felt really weird bringing a child into this place where some of these people, you know, hadn’t even, because this is the other thing that secondary infertility is, that you get very little sympathy because you already have a child and I felt like it just would have been really weird to bring her in there with people who couldn’t even have one to begin with. So yes, it was a lot of shuffling and trying to find child care and all of that. And trying to explain it when I would have kind of break downs in the middle of nowhere, or out of nowhere rather. And I remember this one day, when the hospital phoned up to cancel something with absolutely no apology or whatever and [husband] was out and I completely just like broke down crying and she is like, oh my God, and she probably three or whatever and she is like, “Mummy, what’s the matter?” and I am going, “I am okay.” Oh oh oh and sort of it’s awful, and I remember she decided it was because I had said, “Oh when is daddy going to come back?” And she decided that I was crying because I didn’t know when daddy was coming back. It was awful, it was just like trying, and you couldn’t explain this to her, because she had no idea what was going on. And you know, it was just that kind of thing was really, yes. It was quite hard.
 
Yes. I mean I think a lot of it… it is maybe not, may be not so significant for me, myself. You know, but certainly for [daughter], you know, for another child involved in it. I don’t really know. But I do know that it affected her having a Mother who was constantly upset, and constantly frazzled, and constantly, well almost just like hormonally messed up and that kind of thing. And I think it all kind of goes out the window if it works. You know, because it did and now we have got [son] and you know, we are happy with him and all of that. But I think if it hadn’t worked I would feel pretty bitter at this point, not because it hadn’t worked but because it would feel like an awful lot of wasted time. I mean, I remember even feeling like that at the time, just feeling like, feeling like I wasn’t sort of present enough, and I mean that not a physical sense, but you know, for [daughter] as she was going through a few years of her childhood that I was so consumed by this that it was very hard to kind of be, you know, the Mother, the kind I wanted to be for her. And so it is that kind of thing, you know, the fact that it does take a toll on everybody involved. I mean I am just using her as an example, but I mean it does, you know. I don’t think there is anybody who has done this where they probably haven’t lost friends over it or lost contact with family members over it. Or, you know, there is just so much involved, and nobody looks at it the same way, and everybody has their opinions and it just is going to change things really, yes.
 
 

Martha had secondary infertility; a prescription for clomiphene was the first step. She found the...

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I mean my memory is that you just have, I, anyway had, a million side effects just, you can have like PMT but like nine times worse, you know, you have got all these just sort of mood swings and whatever and feeling sick with it. And I remember getting really, when you finally ovulated with it, probably because you were producing more follicles it is really, really painful and sort of bleeding, and also it is just disgusting. I mean I have heard of people who have taken it, say they had no problem with it. So I think, you know, you probably react to it badly or you don’t. 
 
I think it is something they like to offer you because it is easy, you know, here is your tablets go away and take them and you know, if it works that is great, but I think a lot of the time it doesn’t really work and I think it is one of those things that is really supposed to be used if you have certain problems, but they do use it as a kind of blanket cure, just figuring well if you produce more eggs may be you are more likely to produce a baby, but, [laughs] it didn’t happen.
 
 
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Martha was very frustrated that, having started on an IUI cycle, the clinic was closed on the...

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It would have been a few months because I took that, I would say it was sort of, I think that we had our first consultation at [hospital] I think it was like April time and it was probably the May, June, July or may have even been April, May, June, that I took the Clomid and then it would have been. Oh no, I do remember this because it was September when we got the letter through saying oh you are going to do your IUI on the next cycle. And I was like oh yes, we are finally doing this. So … and this is where I come to my major beef for [hospital] which is nobody ever told us that they closed four times a year. And what that means is if you are doing IVF it is not really a big problem. They just sort of like keep you in a holding pattern if you like for the few days that they are closed and then carry on with it. But if you are doing something IUI it is really, there is no way of controlling it, it is contingent on what your own body does and how it reacts to the drugs, and so what that means is if you go through this whole thing and it happens to fall during the time that they are closed, you have done the whole cycle for nothing. They won’t do it, they won’t, you know, there is nothing that they will do for you.
 
And so we got this thing through and they said call when you start your next cycle or something and so I called when I started my next cycle to make my appointment and they said, “Oh actually we are closing. So you will not be able to do it this cycle either.” And that was the day I completely lost it on the phone and [daughter] was crying and I actually, okay, this is again, I don’t know if it is because I am American and we have different kind of health care system. But I was completely…. I said, “How can you put people through this and not tell them that this is a possibility?” I mean nobody had ever mentioned this and by this time we had been on their books for, you know, a good six months. Or so. And you just think and why did nobody sort of mention that this was one of the downsides of picking this kind of treatment or you know, for this or that or the other and so [laughs] so I was giving off my opinions about this to the nurse on the phone. And she said, “I will put you through to your consultant.” And so I said this to the consultant, and she was saying, “Oh don’t get upset.” I am thinking how can you tell me not to get …. And all I can say is, “I can’t believe that nobody has ever said this to you before, you know. Is this really the first time you are hearing this? This is horrific. I have been waiting years for this and suddenly you tell me, oh no, you can’t do it now either.” And at that point she said, “Okay. Okay. You know, we will duly note that and we will take that down.” But I said, “Like how can you be running this place this way. This is, you know, supposed to be the best one of things in Scotland and yet you are just treated like, I don’t know, nothing, another income I suppose.” 
 
So we didn’t actually get to do it then. We had to wait. Well you know, because by then you have to wait for the whole of the cycle to start. So it is probably, it would have been into October some time when we finally started it and then that was the one where I hyper-stimulated. Another cycle and then that was the one that started in December. When they said, it was in December they said, “Oh you might not get through it.” I just completely blew my top, I just couldn’t conceive how they could run the place that way, really I just couldn’t. I thought, you know.
 
Was it the consultants you were dealing with?
 
No this was the other thing. There was always nurses. And you know through the entire process from the time that we were booked in with [hospital] to the time that I had [son]… I never met my consultant. And we were private patients. You know, we never met my consultant. You are just yes, yes, and the only time I ever spoke to her on the phone, I spoke to her on the phone that one time when they put me through to her because I was completely having tizzy about them cancelling it and the other time I spoke to her, was when I insisted on speaking to her at the beginning of the IVF because she prescribed the same amount of the whatever it was that I had hyperstimulated on before. And I spoke to her then and that is when she told me that that was the standard procedure and that is what they were doing so, get on with it. Which I think is pretty, that would be bad enough on the NHS, but if you are a private patient, you know, I mean you expected like may be something. Or a little bit of some, you know, yes.
 

Martha was hyperstimulated with the drugs given to her for her IUI and found it was even worse...

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The hyper-stimulation with the IVF was quite a lot worse. And that is the one where you can die basically. I mean I was never close to dying but I don’t think that you can, and that is what they, you know, …And again I thought, then again may be I am just really, really unlucky but they tell you at the beginning this is one of those things where you do this like, you know, these pages and pages of small print, oh no you can have this thing, OSS or OHS or whatever they call it, but it is really, really rare. Ra ra ra ra, you know, they kind of just gloss over it and I think well actually this has happened to me twice how rare really is it. Is this honestly that rare or is this may be a bit more of a danger then people tell you about. Or is it just because… everybody who goes in there, is in there for a completely different reason. You know, there are people in there because, you know, they are far too old and everything has kind of gone. And this is last stage it could happen. And then there are people like us who are a lot younger and it is unexplained and there is nothing actually anyone could find wrong. And then there is people with really very clear problems, you know, and yet they are treating everybody who goes in for IVF with a sort of blanket, I don’t know, this sort of theory, you know, this is how it works, this is how we do it, it doesn’t matter what is wrong with you. This is what we are doing. I suppose that is probably not a hundred % true if there are something that is obvious, they probably do certain other things too, but you know, there is a sort of bottom line, like that is what you do. And to me that always seemed kind of bizarre for somebody who has may be, you know, got low hormone levels or has got something else, then yes, you probably need this amount of medication to get things going. But for someone like me, who there was no proven problem. It just, I am not a doctor, but it seems to me, you know, a little bizarre that you would assume that I needed this really high, you know, level of kind of hormonal treatment. Or that you would assume that I wouldn’t hyperstimulate, you know, given that because obviously everything is already working pretty much all right. So to me, it would seem you probably need less to get everything going, and, anyway, I knew, you know, I knew from the beginning really that I was going to hyperstimulate because I said it had happened before and you know it was the same dose of medicine and… but there are many more follicles because they were allowed to develop and you know, but the time I got really ill with it, I already knew it was happening and I knew we weren’t being able to go through the cycle, but I also knew I was going to finish it so that they could freeze them because there was no way I was doing this again basically, and I thought well this is our, you know, our chance where we are going to do it I am not doing it again, and so towards the end which is, it was really antithetical to everything that you want to think, because you know, this is happening but you are still injecting yourself at this time because you have to get it to go through to sort of complete.
 
And so I, I am trying to think how this worked. It will have been quite close to the egg collection by that point when I really started to, you know, my stomach… You can see the size of me, I had something like a 36 inch waist because of the fluid, you know, the way it was swelling. I mean I looked pregnant. I also looked several months pregnant. Really painful. I mean I remember thinking I could really straighten up because it was so painful all the time, it was like aching or whatever and sharp pains as well and you feel horrendously sick and you know, all this. 
 
Meanwhile I am to drag up there every two days and also look after a four year old, a three year old. And then there was a night when they say, you should watch up for a really rapid increase in your, you know, weight, or your, you know, the size of your middle. And both those things happened. I gained five pounds in kind of like an hour or something because what happens is everything is swelling, it is retaining fluid and you just, that is when you can get really into big trouble basically.

So I phoned up the ward, and they were great. You have to come up here. I don’t mind coming up here, but it was quite late at night and they said, “Okay. You can go down to Borders. The local hospital. So I did go there and basically they couldn’t do anything. They just sort of watched and made sure I didn’t get worse and it didn’t get worse and so I just kind of stayed where I was for a couple more days until they did the egg collection and then even after that, they do the egg collection, for a while you feel better because all the stuff has sort of been drained out. And then it all fills up again and so it takes weeks to go away. And the reason why they won’t, apparently why they won’t do they, they won’t transfer the embryo if you have had that, is because if you actually got pregnant after that you would end up really, really, ill for kind of several months, whereas if you let it go away and subside and whatever then ultimately it goes back to normal. So yes…. it is pretty horrific yes. 
 
 

Martha found it incredibly frustrating to be up against something that she could not find a way...

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I think also because I am quite [huh] really I am quite driven and quite sort of self motivated. I’m a writer you don’t have to be like that you are working by yourself every single day, to do something, and I am just like that. I am someone who I never quite, I never really take no for answer. And if somebody tells me, “Oh that is not possible.” I am like, “Oh yes, it is.” And that is kind of my attitude towards most things when I think generally it has been true in my life. You know, there has been a way through almost everything. As long as you kept at it, and you know, you stuck to it. And I suppose in the end that is borne out too, you know, here because I did have [son]. But at the time I wasn’t looking at it that way obviously because I wasn’t on the other side of it. And what I just kept thinking was, I can’t believe that I am up against something that I can’t actually find a way around. you know, that was always hard. It was like, because suddenly you are faced with something that you can’t do anything about. There is nothing. You can’t control it. you know, there is nothing you can do. There is nothing, or you know you can try and for a while you do all these weird things and you are eating this and taking that and this is all before you are getting any sort of real medical treatment. Going to acupuncture, going to reflexology. You know, and you think there has got to be a way, one of these things, and everybody tells you oh this will work, that will work. And you could spend all day doing these things and I do think there was a point at some point, I just realised there is nothing I can do to make this happen, like there is nothing more that, you know, that I can do. And I think that was also quite important in that okay this is my cutoff, you know, having this cutoff because I think as long as it was going on I couldn’t stop thinking well there must be something I have missed. There must be something I can do, so yes, in that way, it was quite difficult. 

 

Martha had secondary infertility after her daughter was born. She felt it was important to set a...

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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.
 
 

Martha who had secondary infertility and IVF feels she will never be able to put the infertility...

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Well it is funny, because the very, I mean the first sort of day, I was just like, you know, I finally did it, and then, I pretty much was anxious mess for the next nine months. It was awful. It was an awful pregnancy which is really too bad as well, because you think…. But I was sort of prepared for that because everything, all the stuff I read about said, you know, it is quite hard to sort of get round it, after you had been through all of this and you know you worry. And obviously the first few months were just awful, just waiting, you know, the time when you think oh it still could not work and you could miscarry or whatever and getting the full scan and all that. When you have got that to come back. And I think because you are so programmed by them to think that something is going to go wrong that it is really hard to imagine that it is going to be all right and so and it was nice because one midwife…
 
I was a few months into it, and she said, “Do you…” she said, “Have you, have you accepted the pregnancy yet? Do you feel all right about it. And I thought oh that is a very incisive question and I said, “Well no, frankly I don’t.” And she said, “Yes,” she said, “It is really hard.” Because it turned out her sister-in-law had had secondary infertility and the exact same thing, and she said it was really… You know, so that was nice, that she kind of at least had it. She was the first person really that I had dealt with on the medical side of it that actually seemed to get it, you know, and it just wasn’t surprising. You know, I think midwives do have a bit more of a window into it.
 
And she would ask me every time I got down there, “Are you still worrying? Are you all right?” You know, whatever, and yes, but yes, so … does that answer that question?
 
No, no, that is brilliant. And once you had him did the sort of worry when the baby was born, was that when you could finally start to put it all behind you, or …?
 
To an extent, I mean, honestly I am not sure I am every going to put it all behind me, because I think, I have thought about this a lot and I mean I am a worrier anyway, that is sort of the way I am, but I definitely, I have to work very hard all the time not to sort of over protect him. And in fact, I bought this, there’s this quite good book called the ‘Long Awaited Stork’, which I bought as soon as I had him because I thought actually this isn’t going away and I don’t want to make him a right mess because, you know, this is really not his problem. It is mine. And anyway this book is quite good, because it just does say, you know, it is different, if you have been through all this and you have waited and you know, it is very hard to kind of look at it the same way, as if you had just gone and had this baby. And it is not, it is not to say that I think, you know, he is any more precious then anybody else’s baby, more than [daughter] or whatever, but I think it is more just that you actually, you think a lot harder about what it means to actually have him and I think just because you have got so used to things going wrong that is very hard to let go of that idea, that actually everything is actually all right now, like things are normal now. And you know, it is really, I do find that hard even now. But it is not like, I don’t worry the way I did when I was pregnant with him no, but it is different. I do find it was different than what it was like even with [daughter] when she was a baby. And even, even with [daughter] I think I treat, not treat her differently, I try very hard not to treat her… but you know, but I do feel a bit differently about them, like there is always this sort of gut reaction of having to protect him from different things. And of course he is a baby. And that is the way you feel. But like more so then I do with her and I think it is just because it is a bit of a sort of remnant of all of that, you know, of the way of feeling about the whole thing, so yes. I hope it doesn’t every become a big problem, but yes, I don’t know.
 

Martha had no idea what treatment entailed before she started.

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But I realised as I sort of went into it. I had no idea what it entailed at all. And I think, I think it is this thing that is kind of thrown around and people always just assume that there is an option and first of all they assume without any real understanding of how often it doesn’t work, you know for one thing and just the physical and emotional toll it takes on you. You can’t, well I mean I can describe it to you a bit, but I don’t think anybody has, you know, I think generally the way it is portrayed, you know, the way that people sort of view it, nobody has any clue what it is actually like, you know, what it does to you to go through it. I actually think it is quite dangerous. I think it is a dangerous assumption that we all have about it. And again I am not sure that that applies to me specifically because first of all, I never thought I would be going through it, and by the time I was going through it, it was because there wasn’t really much choice. Well there was a choice but there wasn’t a lot of choice if we wanted to do what we wanted to do. But I think ] I there is a danger of it becoming a kind of part of people’s life plan, you know, if I wait to have kids oh and it doesn’t work, oh just have IVF. And it is like, it is not like that, and it isn’t easy and it doesn’t necessarily work and you don’t have any idea what it is going to do to you, you know, or anything. So yes, and I think, not that it would, like I say, it wouldn’t have changed what I did but it also might have been nice to have a bit of an idea of how horrible it could be before I actually went into it, instead of suddenly being in the middle of it, realising how horrible it was.

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