By the time they reach the clinic, many people will have had a long wait. Expectations of their early consultations are therefore often high. Here we discuss their early consultations and investigations at the fertility clinic.
Fiona had to wait a long time before she was given an appointment at her local hospital. She was called into a group meeting organised by the clinic, which she thought was the start of treatment. She was therefore disappointed that there was still another six months of waiting.
Fiona had waited a long time and was excited when she was called in to the clinic for a group...
View full profile
Age at interview: 41
Age at diagnosis: 33
SHOW TEXT VERSION
And you are given, we were just told to go away and wait and that they would phone you when you had a place, what is called a group meeting, which is your first point of excitement, you have got a group meeting, but from the group meeting date, we then had another six months before we actually got an appointment to start the drugs.
And the group meeting is really funny, because you go along thinking right this is it. And you get there and there is hundreds of people there thinking the same thing. And I remember going and just looking round and there was a whole lecture theatre full of people. So then you think, oh actually, you know, because you imagine it is just going to be a few of you. Actually it is an information evening really to tell you what IVF is about, what the different processes are. How long your waiting is going to be.
And I always remember one woman put her hand up and said, “And how much time will I get off work.” And I was so cross with her. I thought you are only here to find, you know, it was almost I will need the time off work so I can do IVF. That was the way I saw it at the time. I was just like, “Oh you want a baby.”
So that was our first kind of point. That was probably about a year after. And then we had another six months, because I remember the woman phoning us at home and saying, I don’t know, your date would be March and it was still about October then. And I was so angry. And we had this little pot teddy, that was a really, you know, I loved him. And I threw him on the phone and broke it. I put the phone down and had a complete tantrum. And [husband] was really shocked. He said, “What are you doing?” And I wanted to just wreck the place.
Because it is that feeling of helplessness again that somebody says, “You have to wait and there is nothing you can do. You can’t change it, you can’t phone up and beg. You can’t say please, you know put me in now, and they will put you in now. You can’t do that. And I hate that feeling of not having that control, or that, you know, being able to change it. So then, you know…
Early visits to the clinic often involved various blood and sperm tests. These were to establish whether there were identifiable problems, either with the woman’s hormones or ovulation or with the man’s sperm. Sometimes couples were also asked to complete a post-coital test. Catherine said she found this humiliating; “Just such a ridiculously embarrassing thing to have to do and so kind of humiliating”. Women might have investigations for blocked fallopian tubes, including being referred for a laparoscopy (an internal examination with a camera, gas and dye) under general anaesthetic.
Catherine was surprised to be sent for a laparoscopy, under general anaesthetic. She had never...
View full profile
Age at interview: 45
SHOW TEXT VERSION
The one thing I particularly remember about the tests was having, being told that I had to have a laparoscopy what seemed to be quite early on in the process. And it, I remember them sort of saying, “You have to go into hospital and you’ll have a general anaesthetic.” And, and it seemed like this really enormously huge thing to be doing so early on. I’ve never been into hospital, I’ve never had a general anaesthetic in my life, and I was really really scared about it actually. And I was more scared about the whole sort of process than I was about what it might show. And I remember how frightened I was when I went into hospital that day to have it done, and sort of turning up on this ward and waiting for this kind of operation thing. And there was nothing wrong with me. It seemed a really odd sort of way to be going about things. And I kind of, at that point I remember thinking maybe I’d jumped into it all too soon and maybe I should have left more time and maybe I was making things worse by stressing out about it so early on really. And also after having the laparoscopy, I kind of thought if it was just a test you ought to sort of feel completely fine. And of course you don’t, because it’s quite a big thing really. I mean it’s not a huge operation but, you know, someone’s been delving about in your innards. And I felt really awful for a couple of days afterwards, really kind of, you know, frail and sort of, and it, I suppose part of that is just the, having had a general anaesthetic. But actually that was really, you know, I was quite surprised at this, at how much it affected me going through that. And in fact it was fine. And, you know, now I know it’s a completely standard procedure. But I think when you’re quite healthy and you feel completely fine, to suddenly be told, “Oh, this is part of our investigations. We’re going to give you a general anaesthetic and open you up,” it all seemed a bit extreme really. The other test which was really awful, which I don’t think they do so much now, is the post-coital test, where you basically have to have sex and then go to hospital a number of hours later. Then they take out, they do a smear and take out a sample to make sure that the sperm are living in your cervical mucus. Which is just such a ridiculously embarrassing thing to have to do and so kind of humiliating. And, you know, you just kind of, and I’m really glad they don’t do it so much now because it just felt like a really awful test to have to go through actually.
Martin found going to the hospital to do his sperm test unpleasant, and the wait for the results...
View full profile
Age at interview: 41
Age at diagnosis: 35
SHOW TEXT VERSION
Went to see my GP and it was the matter of a straightforward analysis, so they packed me off to the local hospital was a rather unpleasant experience. There was no facilities to produce a sample, they kind of just shove you off in the direction of the public toilets and expect it to be just like that. So, I must say, the whole experience wasn’t great, but I eventually produced a sample and then you just wait for the results. It was about ten days.
So quite a nerve wracking period I think. Because you are starting to really question how you feel, how would you feel if the result came back with a problem. So I guess over that ten day period I became quite anxious about the result. And went back to the GP and got the result and the GP quote, his words were,”Very respectable. There’s no problem.”
So that was in some ways, relief because you don’t want to feel the problem’s with you, but on the other hand it didn’t answer the question that we had as a couple, well why isn’t it happening.
So [wife] went off to see the gynaecologist, and also went through some tests. Oh that was a lot less conclusive as well, in respect they couldn’t really identify anything, except she took with her my results, and he looked at those and said, “No, this is miles wrong, [you know] there’s definitely a problem here.”
So [wife] came home from that and I was expecting her to say, you know, talk about her situation and in fact she was talking about my situation and she said, “No, this isn’t right.”
So thank God for the internet, because we went straight on the internet and started our own research and as a couple we are both pretty efficient at finding out answers for ourselves and also really want to be well informed of what we are doing so we went on the internet, and yes, certainly you could see from the results that were on the lab report that things weren’t right.
So that was an amazing rollercoaster, because I had gone from this sort of worry, to relief to this sort of false expectation. So actually we couldn’t believe it.
So back then to the GP, trying to be tactful, and they sent me for another test and I had another test and again ten days later the results. And again he says, “No problem.” Which obviously we challenged what he was saying and it boiled down to the fact that they just don’t know. And that became very clear later on as we went through our journey. That GP’s have no formal training whatsoever in fertility issues. So what they know is what they learn through anatomy and that’s it. So he really wasn’t in the position to make the judgement or the diagnosis.
As we have shown in ‘Funding fertility treatment and choosing a clinic’, the overall feel of a clinic and the friendliness of the staff were very important to many couples. Several women described their relationship with NHS or private clinic staff very positively. Sandra found the staff helpful throughout her treatment, always on the end of a phone if she had a question. She dealt mostly with nurses during the scans and explanation of treatment, with the consultants doing the egg collection and transfer.
Janine said the staff were “absolutely lovely” at the assisted conception clinic she and her husband attended, offering them support and encouragement. Karen, who had had a bad experience at her first, private, clinic, was delighted that the staff at the next clinic took the time to explain things clearly to her.
After a bad experience at one private clinic, Karen chose to go privately at a NHS clinic which...
View full profile
Age at interview: 34
Age at diagnosis: 32
SHOW TEXT VERSION
We went to have a look at another place and it was an NHS, but you could go in as a private patient. So we looked at that on the internet and they had a very good reputation, a very good success rate, so we thought fair enough, yes, we’ll go and have a look at this place. And I said, “If I go for the initial evening and I don’t like it, I’m not coming back.” I said, “Do you understand? We will look for somewhere else, until, you know, we’re happy.”
But the initial, even the initial consultation, was great, answered so many more questions. I could sit there and think, now that’s why they did that, or that’s why they did that. They answered the questions from before that I’d never got answers to. Made me feel completely at ease. Told me we could ask as many questions as we want. We could ring and ask questions if we were feeling unsure at home. The counsellor was on standby most of the time. But if you rung and said before you came there, they’d make sure someone was available to speak to you. You know, or if you said on the day that you were struggling, you might have to wait, but somebody would eventually come and speak to you and sort things out for you. And it was just, and they explained all the drugs to me on that night, “This is what you’ll be taking.” And, “This is why you are going to take this. And then we’ll give you this and this is why. And this is what this is going to help you do. This is going to help relax you on the day when you come in to have your egg collection. And they explained absolutely everything. And it was a much, from the outset it was a much nicer experience.
However, some people found their visits to the clinic disappointing or unpleasant. Carol found it distressing that every time she went to the clinic she saw a different member of staff who would sometimes express a different opinion. She would then go home and worry about whether they really knew what they were doing.
Several women described long waits and crowded waiting rooms. Some found waiting with lots of other people in the same situation distressing. However, Michelle said that the busy waiting room meant that, “You don’t feel so lonely”. Although she did find the investigations were exhausting and degrading.
Lulu found it frustrating that the unit was closed over the weekend which meant that some months, during her IUI treatment, she could not attend when she was ovulating. Others were disappointed by their clinics not giving them enough information about their treatment or having enough time to explain the purpose of the different procedures to them.
Maggie would have liked more time with the specialist to explain the options but in a crowded...
View full profile
Age at interview: 36
Age at diagnosis: 30
SHOW TEXT VERSION
I think when we started out with fertility treatment I did ex-, I expected it to work. I think I just wasn’t prepared for it not working. I’d got such I guess trust and belief in the Health Service that, you know, “If there’s a problem, it can be fixed.” I, there was no expectation in me that the, the treatment wouldn’t work. That was a shock. I guess, you know, any, you know, we were brought up to believe that if there’s a problem, you know, if you have cancer, you can have chemo and you can get better. So I thought having, you know, a fertility problem it was as straightforward as having the treatment and then everything will be okay. I didn’t expect it not to be okay.
Did the doctors explain to you that it might not be okay?
We didn’t really, we, I don’t ever recall having the conversation about success rates with our fertility specialist. I think a lot of the information that I’d found about rates and percentages was on the Internet. That was where I got that kind of information. I do, I did sense us kind of being rushed a little into the next, on to the next treatment. I did feel a sense of, you know, “Right, move on, move on, move on.” And I think, yes, that was, that was tough.
So why do you think you felt rushed? Was that because the doctors weren’t spending enough time explaining things to you in the consultation?
I think I felt rushed in our appointments because there was always a waiting room full of other people in the same situation. I knew we were on a kind of, you know, there was time pressure on our fertility specialist. We would go in and the clock was ticking as soon as you sat in there. You know, he told you what he needed to tell you. I would go in with a huge long list of questions that I’d written down in advance because I knew that I would get upset. I’d get kind of a quarter down my list of questions, then, you know, you’d see him looking at his watch and it was time to be out. And that was, that was hard. I did feel like just a number. I know there can’t be that sense of, you know, h-, a huge sense of empathy from a fertility specialist. You are, you know, there’s a, they’re dealing with huge amounts of people and we’re just another couple who can’t have children. But I guess I miss that kind of sense of human, human understanding really. I remember when we were being told that IVF would be the next step for us just thinking, “Don’t you understand how hard this is for us?” and, you know, crying again. And the fertility specialist looking at me with absolute horror when I broke down in tears. I do remember that, you know. And trying to pull myself together, trying to be, you know, trying to be okay. But it was just an, it was an emotion that I felt and it needed to come out. I think it, it’s hard and I think it’s unhealthy to bottle up that emotion. It has to be let free.
What do you think he could have done differently?
I think the biggest thing that I would have liked our fertility specialist to have done differently was to give us time, to explain the options and to give us a little bit of breathing space. It felt as though once we’d seen the fertility specialist we were just going from one thing to the next to the next to the next without really any chance to reflect and without any real explanation of why that particular course of treatment was going to be useful for us. I guess the re-, it’s a standard for, you know, you try, you, it is just a standard procedure for everybody. You get the male sperm count done, you have your ovulation test, you have a laparoscopy, then its Clomid, IUI and
Michelle was disappointed that the staff at her private clinic, who had seemed so caring during treatment, did not seem interested in her after it failed. She was told she could come back to the clinic when she had the money for more treatment.
Last reviewed July 2017.