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Sarah ' Interview 27

Age at interview: 36
Age at diagnosis: 33
Brief Outline: Sarah had infertility caused by endometriosis. Her IVF treatment was unsuccessful, and she was considering adoption.
Background: Sarah is a hospital consultant and lives with her husband. Ethnic background' White British.

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In her late 20s, Sarah discovered that she had endometriosis, although did not realise at the time what a threat it might pose to her fertility. She had treatment for the endometriosis and doctors encouraged her to try IVF. She and her husband embarked on five cycles of IVF treatment although not all of them were successfully completed. Sarah found the egg collection very painful and for her last cycle she had the egg collection done under a general anaesthetic. At the time of the interview, Sarah and her husband had stopped treatment and were looking into adoption, although this was not proving straightforward. They had made a start with adoption proceedings from Guatemala, but the government had recently suspended Guatemalan adoptions. She had cognitive behavioural therapy (CBT) after finishing treatment, which she found very helpful.

 
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Sarah had painful periods and was diagnosed with endometriosis, so she was not surprised when...

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I suppose it really starts when we lived in New Zealand in about 1997 or 1998 and I started have much more period pain then I had had before and I went to the library because I was thinking of getting a job writing for a pharmaceutical journal and I went to look at this journal and I just looked, look things up and decided that I’d got endometriosis. So I’d have been about 28 then and I was sure that was what I’d got because it fitted exactly. But I didn’t really kind of do anything about it. Because I didn’t really want to, you know, it weren’t, I just didn’t want to do anything about it, so I just, you know, carried on. 
 
And then when we started trying for a baby, we tried for, you know, a little while and again really I were not really that surprised it were not happening because I was sure that I had endometriosis but I still waited about another year trying before I then went to see somebody.
 
 
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Sarah, herself a doctor, had suspected she had endometriosis but had not had tests. When she had a laparoscopy she was shocked at the extent of the disease.

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So I went to see gynaecologist. I guess the first day that it really struck me that things were looking much worse then I had anticipated, was when I had been for an ultrasound pre-operatively. He’d scheduled for a laparoscopy and I went for an ultrasound and she found that I’d got two big endometrioma, so big that my ovaries touched in the middle, so they were both about 10 cms in diameter. 
 
And I remember that were the day that I thought this is different, this is something different to what I had thought, you know, this is kind of, this is serious. It is actual real threat to me fertility. And so that were, that were really quite hard and I remember we went on holiday shortly afterwards between the ultrasound and the operation and we are kind of always the people who always smile at babies in queues at airports and all that, and I remember seeing this baby who were kind of smiling at me and my husband and I’d said to my husband, “It is okay. We can still smile at babies. You know, we can still do what we normally do.” 
 
 
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Sarah eventually decided to stop treatment and would have liked more direction from her doctors...

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I mean I think the consultant would’ve let us carry on as long as we wanted to, because I think he so desperately wanted to provide us with what we want, you know, and, you know, you know, and he would forever tell me stories about people who have got an eighth of an ovary who managed to get pregnant and all this kind of thing. And again I think that really, I think we’d have welcomed a bit more direction, I think, I think may be doctors, fertility doctors have got to take a bit more responsibility, to, so people who really are poor, I guess there is a thing, they didn’t want to feel like they failed, they want to keep on pushing until they had got a successful outcome. But I think it is, yes, if somebody had told us to stop earlier it would have been quite nice to have the decision taken out of our hands. If somebody had said it is hopeless you should stop, that would have been in some ways quite helpful. But nobody knows, nobody knows, and I think, you do need, you know, all these things, you just need a little dose of luck don’t you and sometimes some people get it and some people don’t. And we haven’t had it so…

 
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Sarah always thought she would have children and remains disappointed that friends around her...

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It is less frequent. But like me mother has got a picture in her flat of me and my sister when we were little, on the windowsill, and like even every time I see that I just feel, I just think God when I were that age I would never have thought that I would… turn out to be so disappointed, you know, because you always assume you are going to have a baby. You spend all your life playing at dolls don’t you and pushing dolls round in dolls pram, and like if any of my Mum’s friends or anybody we knew had got a baby we always wanted to go round there and see it and like I were always much, much more into children then my friends and when they all started having their babies before we started, you know, trying or whatever, it turned out they were always ringing up and saying what you should do and you know, I guess out of everybody I knew I would probably have been the one person that everybody would pick in terms of someone who definitely wanted to have children, you know, you know. Like there is one couple that we met that lived, two couples and we all kind of did things together when we were in New Zealand and they have got three children each and they have kind of got three children all the same age as each other. They have got, you know, they all go on holidays together, they have got three children. And the time that we have been back eight years now easily we have been back, they have found and planned a family and they have got, you know, a whole gang of folk between them and they can do all these nice holidays, and each kid has got, you know, an age appropriate playmate. And we are just not.

 
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Sarah was excited to be starting classes towards her adoption from Guatemala, but was told she...

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So they let us get started and we went to class preparation classes, and we got us references from the medicals and all that and we felt like really quite positive, because we thought at last something is moving in the right direction. This is something we can actually control. We can work on this. And we can make it work.
 
And then when the medicals were forward to the adoption medical adviser I just got this call that I had been turned down for mental health reasons. And basically it took out a lot of probing to find out exactly what they had decided. But their medical advisor who had never met me, never spoken to me, never spoken to the referees, never spoken to the therapist, never spoken to my GP had just made this decision that because I had had cognitive behavioural therapy that must indicate that I have got a mental health problem. So therefore I couldn’t carry on with the home study until a year had passed from the date of the last session because that is the date at which I achieved psychological closure.
 
So I mean I spoke to him on the phone and it just sounded like a nonsense to me. And I said to him, “Well what would you do if people had not seen a therapist? How would you assess a date of psychological closure?” Not like it arrives in an envelope like, like a Premium Bond, you know. And this has made me so mad, because it is just such poor quality medicine and I think it has got no evidence basis at all. And he didn’t even, even if he had made that decision after he had collected enough information, I still would have been mad, but the fact of the matter is, it just seems like he had made it on a whim and he didn’t have enough information to decide about that. And also it is quite, you feel quite stigmatised. I mean somebody implying that you are not mentally fit to be a parent, you know, and I think really I deserved a bloody medal for what I have been through. I don’t deserve to be being criticised for being in some way inadequate. So this has made me so cross. I can’t get this… that basically you take pro-active steps to try and safeguard your mental well being after you have been through the most stressful thing that has ever happened to you and then you are kind of… so the… basically the thing what is it, is part of the adoption people is, you are better off not kind of owning up to any kind of mental health problems, and you are better off probably not getting help and not seeing people because then you are rubber stamped as being somebody who has had mental health problems and then you run into problems with the adoption. 
 
But then as it has turned out we wanted to adopt from Guatemala and then this December basically the government has issued a statement that all adoptions from Guatemala have been suspended indefinitely for some concerns about financial irregularities and stuff. So, in some ways, it is good that we didn’t get on sooner or else we would have done even more work and it would have all have been in vain. So it really does just feel like it is one thing after another. Like you feel you are making some positive progress towards your goal and you just kind of again are disappointed in new and, you know, different ways. 
 
 
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Sarah was prepared for one disappointment at the end of her IVF treatment, but not all the ups...

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So I felt that a lot during the first course. The first course of treatment. And I also, I found it, all in all much, much worse than I’d anticipated. I mean I think I am a reasonably, you know, well until all this happened, a reasonably pragmatic, sensible person. And I think it is fair to say that whole IVF experience has been much, much worse then I would ever have anticipated. And I think it is really one of them things, that, you know, as I said, there’s only them has had it knows, and I think it really is the case with this. I’d have had no appreciation of it until I had done it myself.

 
Anyway we started the IVF in 2005 and I think the thing that surprised me as well is it is not just one disappointment because I would have imagined before that you would get on, you know, kind of on the treatment, went through the treatment cycle and basically the one disappointment would be at the end. You would do the pregnancy test and it were negative and that would be the big disappointment that you had to gear yourself up for.
 
And I suppose what I weren’t geared up for all the little highs and mostly lows in between, in terms of, you know, every time you went what were your blood levels going to like, were your follicles going to be there, were there going to be enough, and were they going to be big enough, and so every appointment you went to it seemed as though it’s on, it’s off, it’s on, it’s off. And I hadn’t really anticipated that at all. 
 
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Sarah found writing Christmas cards with just the names of her and her husband's name, plus the...

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I mean what’s, back to Christmas, writing Christmas cards you know, because basically you find that everybody you are writing multiple names on cards and then we are signing our two names plus our dog, and you know, everybody has got a new name on the Christmas card, so year after year you go through your address book and you know, there’s people who have not even known each other for the amount of time that we have been trying for a baby and in less time then that, you know, they get married, they meet somebody and then they are pregnant, and you just think how come we have been left behind. Everybody else’s life is moving on to the next stage of adulthood and ours is not, you know, and it’s, it’s tempting to think oh let’s travel, let’s have an adventure, let’s do something different to all that.
 
And we went back to New Zealand March before last to go to a wedding and, you know, we thought. But then it were exactly the same and everybody that we met there, who are our kind of age, had all had got a couple of kids, and were all moved into next phase of, phase of their lives. And that is the hardest thing I think, when everybody else is moving on into the next phase of their life and we are not. 
 
 
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Sarah felt bad about taking time off work, but she does not regret taking care of herself during...

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And it is very hard to know what to do and you feel bad having time off work because you are not poorly and then you are worried that people are going to see you if you go out shopping and think well she looks all right to me. And all that kind of thing. You don’t want to tell everybody your business but then similarly, you feel a bit conspicuous being off work. But I the longer term I don’t regret having that time off work, because I think you have got so many regrets after at least the one regret you have not got is, if only I had taken better care of myself. If only I hadn’t been lifting at work or breathing in gases or whatever it might have worked. So I think it were the right thing to do to take that time off work. 
 
But anyway before the two weeks were up anyway, I knew it hadn’t worked because I started having, you know, period pain and a bit of spotting and stuff like that, and I thought well that is that it has not worked. 
 
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