Martin ' Interview 29

Age at interview: 41

Age at diagnosis: 35

Brief Outline: Martin and his wife were told after ICSI treatment that they would need donor eggs and sperm. They travelled to Spain for treatment and were expecting twins.

Background: Martin is a franchise recruitment manager and lives with his wife, Naomi (Interview 28). Ethnic background' White British.

More about me...

Martin and his wife, Naomi (Interview 28) started trying for a family shortly after they were married. When nothing happened after a year they consulted doctors and started tests. Although Martin’s original tests showed his sperm to be fine, later tests showed that he had a low sperm count and doctors recommended that they try IVF with ICSI treatment. After two unsuccessful cycles, they tried to develop the embryos to blastocyst before transfer. The embryos arrested and doctors told them they would need donor eggs. This was devastating news, and they took some time off treatment and started to investigate adoption. After eighteen months, during which time adoption proceedings did not make much progress, they decided that they would try again. This time they opted to travel abroad for treatment, and went to Barcelona, Spain. Martin and his wife opted for treatment with donor eggs and donor sperm. The first cycle was abandoned as the donor was producing too many eggs, but they successfully conceived with the second cycle and were expecting their twins at the time of the interview. 

Martin and his wife started trying for a baby soon after getting married. As the year progressed...

Anyway we got married and then pretty well soon after that started trying. We put it off at certain points when we initially started because we didn’t want a baby at Christmas and, you thought, that’s it you just go and make a baby and it happens. And after about a year realised it wasn’t to be, that wasn’t obviously how it was going to work for us, and more as we went through that year, the more anxious I think, we both became. But I certainly started to think, well is it me and started to get a little bit anxious about that. 

 

So eventually it go to a point where we sort of acknowledged that there was an issue and, I don’t know how many times [wife] lay with her legs up the wall, and all the things that we tried, avoiding hot baths, and hot water and caffeine and everything that we could have done to try and help ourselves had failed. It was time to say well let’s go further afield and get some medical advice. 

 

So we did. I went off to the doctors.

 

Martin explains that it took a while for him to feel relaxed and open about his low sperm count....

So we came terms with that and [wife]’s feelings. I think it took me a while just to be so relaxed about talking about it as I am these days. There is a perception, I use the word perception, a perception out there of how you think people will respond to you. You know, your peers, the lads down the pub, everyone that you know. So are they are going to look at you. Do you feel less of a man. How does that affect you and it took me a while just to get it into perspective. And I thought no it is not my fault, I have not done anything, you know, I suppose it was through having mumps as a child. There’s no physiological reason. There is no genetic reason. So they are a little bit baffled as what causes the problem. 

 

But, so I thought no I am not going to be ashamed about this, I am not going to deny it, I’m not going to be embarrassed when I talk about it, you know, because I have got no reason to be, and you know, if I had any other kind of condition, people wouldn’t sort of condemn me or look at me in a different way, so why should I be any different about this? So I chose to be very upfront, I think to some people’s shock. You know, I was so upfront, even down to the case that the guys would sometimes used to just make a joke about it. And even today people come out with the most ridiculous comments, totally innocently and I fire back something really quick, you know [laughs]. And you can see the horror.

 

I mean just to give you an example, my boss said to me the other day, we were making some joke about a project and he said, “If that goes wrong I’ll have your balls.” And I said, “You can have them, they’re no good to me,” [laughs]. So all that kind of banter, and the reaction to that, is whoops I just dropped a clanger, but on the other hand they can see I take it in good faith. 

 

Martin and his wife had funded some of their initial treatment themselves which then rendered...

So again back up on the horse really and we just wanted to get on with it. We were desperate, absolutely desperate to have our family, so we got back up on the horse, and [wife] went to the doctor and the doctor said yes, you comply with all the guidelines laid down by NICE for NHS funding, but when he actually went to put us forward they realised that our local PCT had introduced some additional guidelines that rendered us ineligible.

 

The one that really I think got was the fact that we had privately funded treatment historically, retrospectively they had brought a guideline in and they penalised people for something they’d done retrospectively. I just can’t understand how you can exclude somebody for something because of something they did before you set the rules, before you laid those rules down. And it turned out if we had spent the money on gambling or a holiday or a car or something, if we’d been frivolous with the money and said, “Okay the NHS will help us when we’re ready” they’d have funded us. But because we had tried to take to take the burden off the NHS by funding ourselves they then penalised us for it. And I think, today struggle with that, how they can see that’s fair?

 

Martin found going to the hospital to do his sperm test unpleasant, and the wait for the results...

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.

 

Martin was excited to discover that the success rate at the Spanish clinic was 65% for dual donor...

So we were ready to start again and we started looking into abroad because of the availability of donors and also the success rates, and it became really quite exciting when we started to read that with dual donor in Spain was 65% of success. We could actually have lots in our favour for once and there could be more chance of it working than not working. It was fantastic, an unbelievable scenario. It’s scary and people talk about overseas as if it’s one place, you know, it’s bad overseas it’s not regulated but where precisely are we talking because it’s not one place. And that a point that I would immediately keep making, because ‘overseas’ isn’t this deregulated nightmare that people sometimes paint the picture of.

Like many people, Martin felt he was naive about treatment abroad. He wants to use his very positive experience to help others make decisions about going abroad for treatment.

But there are a lot of people that very naïve about overseas treatment. They think it’s going to be a dingy back room down some side street, and somewhere that doesn’t speak any English. That’s fair I think our expectation wasn’t far off that when we started. But you, talking to people, and we went and viewed in our case, but it’s learning about it. Once you are not naïve and ignorant, you have learnt about it, you can make a judgement. And, you know, I would like to help as many people as possible, who might be considering it, but have shut that door because of their preconception of what it is and actually show them that it isn’t like that. But every country is different. You know, we have got people who have gone to Russia, the Ukraine, their experiences are very different. Not necessarily negative, just very different to, but they had reasons to go to those countries. Sometimes it’s to do with the ethnicity of their background is Eastern European origin then you might be more inclined to go to an Eastern European country. If you’re an India person then probably India’s a good place to go. And it’s important that you speak to people who have been, and do your research and understand, and if you can get there in advance and check the place out, that is not always possible, the further afield it is, but certainly learn as much as you can, because you, if you don’t talk to people about it, then you really make pre, pre, you know, judgements. And I think you’ll be surprised by what is out there. You’ll come home and be shocked by what we do here when you see how it’s done in other countries. 

Despite a setback, Martin explains that everything was handled well and contrasted favourably...

So when we came back, we signed the forms, we’d made the decision, press the button, five weeks later the phones rings, we have a donor. So… massively excited. 

 

This time it is different because we have taken all our bits out of the equation that obviously are causing a problem someone along the line. Here we have healthy people, that are screened, for actually everything. We know they going to be fairly young, everything will be perfect for them. So the odds are that the embryos will be great quality, there is a 65% chance of success. Odds are in our favour. And pretty well everybody we know on the bulletin boards that’s going there, it was positive. It worked. So were so excited by that.

 

So we were aware we had been matched, they started the drug protocol on the donor, we now have a rough time line for when to prepare to go out to Spain. And at the eleventh hour we were waiting for the phone call to say, “Get on the plane.” And we get the phone call to say that “We’ve taken her off the drug protocol and the treatment was aborted. 

 

Another setback, another massive disappointment really, you know, we expected to be flying out to [city] in 24 hours and here we are back on the shelf again. But it’s not for the reason it was before. This is just a delay, this isn’t a failure, it’s not like the cycle has gone wrong. It was just that our expectations were gone, the excitement was there, and there was a setback.

 

Anyway, we got on with our lives, okay, you know, the phone would ring again shortly and in a couple of weeks it did, and they had a new donor, donors. So, that was great, and this time it went absolutely perfectly and we did get that call to say, “Get on the plane. We’ve got some great embryos.” 

 

And went over to the clinic and did transfer and it was a totally different experience to this country. I went into again when they put the embryos through the transfer, but this wasn’t a room off a corridor, this was a proper operating room. I had to wear scrubs, you know, we had to absolutely decontaminate, there was no playing around here. Whereas in the UK it was a room off a corridor. You know the difference, I can’t really start to explain. And the professionalism that we saw out there.

 

And it was very well done and they put it in, and then there is no sort of rushing you out, time to go. [wife] went into a private room for recovery and she was on the bed and a couple of hours lying down just to make sure we didn’t disturb anything, and then in our own time we leave. We had a couple of nice days in [city] and then back on the plane come home. Two week wait. 

 

Martin described how important it is to do your homework about the country you are considering,...

You do have to do your homework, you have to fully know and understand where you are going and why you’re going and what you want from that. I read something earlier today that talked about the regulation, it’s not as regulated. Because in Spain for example, the donor was totally anonymous. We have no right to know who they are, which is different to the UK. That doesn’t mean it’s not as regulated, but it is differently regulated. And in some cases, some people might find that an advantage. So… Sorry.

 

That’s it, carry on.

 

So in some cases some people might see that as an advantage. Certainly, the European countries, are more regulated in many cases then they are here. So the regulatory issues really are not an issue, but you have to understand what the regulations are in the country you are going to. And that’s part of doing your homework and making sure. 

 

We decided on [country] because of, for a number of reason, the availability, it’s not far to fly, it’s readily accessible. The clinics are absolutely second to none out there, partly because we could have a nice time going there as well. It’s a nice place to go. 

 

Martin discovered that his sperm quality contributed to their fertility problems. It took a while...

So a bit scary for people that rely on that and in fact you can’t rely on that, so there clearly was a problem with me. So we came terms with that and [wife]’s feelings. I think it took me a while just to be so relaxed about talking about it as I am these days. There is a perception, I use the word perception, a perception out there of how you think people will respond to you. You know, your peers, the lads down the pub, everyone that you know. So are they are going to look at you. Do you feel less of a man. How does that affect you and it took me a while just to get it into perspective. And I thought no it is not my fault, I have not done anything, you know, I suppose it was through having mumps as a child. There’s no physiological reason. There is no genetic reason. So they are a little bit baffled as what causes the problem. 

 

But, so I thought no I am not going to be ashamed about this, I am not going to deny it, I’m not going to be embarrassed when I talk about it, you know, because I have got no reason to be, and you know, if I had any other kind of condition, people wouldn’t sort of condemn me or look at me in a different way, so why should I be any different about this? So I chose to be very upfront, I think to some people’s shock. You know, I was so upfront, even down to the case that the guys would sometimes used to just make a joke about it. And even today people come out with the most ridiculous comments, totally innocently and I fire back something really quick, you know [laughs]. And you can see the horror.

 

Martin said it was hard to be a bystander, especially once they started donor treatment.

I battled with my own emotional elements for the want of a family and the disappointment and everything else. But also, looking after [wife], I see her go through so, so much hard emotion of the types she has been through and the ups and the downs. I want to make that right and I can’t, and that gets me more. When the cycle fails I can almost deal with the failure easier than I can deal with what’s coming. The upset that I know how she is hurting, and she’s feeling. That absolutely is horrible place to me. And I just want to put it right.

 

 Sometimes you feel like a bit of a bystander as well, because physically your partner’s going through everything. They’re the ones on the operating table having eggs collected and embryos put in, having the drug protocols, they are the focus of all the treatment. And sometimes, you are almost like a spectator and you feel a bit outside of it. And the medical profession doesn’t help, because they always refer, they don’t talk to you as a couple. You will be sat in the waiting room and they will say, “You can go in now.” And they’ll talk to wife, and I just follow. Rather than recognising both of us and saying, “Would you both like to come through?” Never do they do that, they almost forget you’re there. You’re shoved off to the side, you are shoved out here and you have a very secondary role. All the way through.

 

When you start donor. I needn’t have even gone. I didn’t even have to go to [country] I wasn’t even needed for that bit. So there is a risk that you can feel totally irrelevant. I can be really aware of that and try to make sure I don’t feel, and [wife]’s been great, she absolutely made me involved in everything. And I mean it’s very important now she is pregnant that I’m involved right down to going to midwife appointments with her, the midwife thinks I’ve lost the plot. They don’t normally see the husbands coming along. But I want to be involved. I want to be part of it at every stage. I have been up until now. And I am going to continue to be, you know, whether it’s a midwife appointment or a NCT class or whatever. I will be involved in that. Because if I’m not there’s a risk I could start to feel alienated. And [wife] is going to give birth to these babies. She is involved, they are growing inside her. My role is actually, this could happen without me being involved. So I have got to make myself involved. And I am sure as soon as they are born and the bond forms. Well the bond is there now actually. You know, I see them as people. But you know, and since I actively have a role to play I am sure that will get easier in time. But there is certainly a risk, in IVF, let alone donor, you don’t have any of the physical elements. 

 

Martin felt some friends were "walking on eggshells" around them affecting the dynamics of their...

And then people around you start walking on eggshells, they don’t want to mention… when you have got friends getting pregnant on the one hand you want to be pleased for them, and they want you to be pleased for them. It’s their great news. But how do they tell you this. How do they share that. That causes problems as well. And we had at that time we had very good friends who had just got pregnant and they came round, and you know, said, “ I think we have got to tell you this news.” And they were actually very good about it and sensitive to how we might feel. And that was fine. 

 

But not everybody was quite so sensitive and some people they don’t feel that they can talk to you about it, so they just back off and distance themselves, and you kind of then start to feel almost like lepers. The infertile [laughs]. So it affects the dynamics of friendship.

 

The other thing, although it is quite amazing, is the amount of people coming out the woodwork who have been through treatment. The colleagues you work with, someone that I worked with someone was having donor IVF and a number of people in your sort of social circle that actually said this is how we had our children. People start to open up and you realise that actually there is a lot of people round you. We have got lots of friends who have been through it all. Perhaps some time ago or recently. So … that sort of helps as well. People who do understand. So that’s good.

 

And friends this time, not so good, they have been through it with you once. They are bored. They don’t have to have to put the act on and say the right things. So a lot of friends distanced themselves or just made themselves scarce and stopped inviting us to parties and things. Didn’t want to be around us, having kids and things, it was all, they couldn’t talk about their kids if we were there, so… we started to be pushed away, and that makes you feel worse, because these are people that you socialise with, have been friends for a long time, and suddenly they don’t want to know you. You know, that doesn’t help. 

 

But on the other hand we made some really good friends through the contacts through bulletin boards and support mechanisms that we had got involved with. Some really great people, you know, but people that did understand where you were at and what we were going through and were going through it themselves. So you almost become an infertile club and provide that …

 

The only people that you can really joke about it, was other people that were going through it. I mean you could have an evening and it could be actually a quite light hearted evening because they weren’t just going to tell you just relax. I know somebody who had trouble, and they just relaxed and they got pregnant. If someone every says that to somebody who’s struggling they are going to get it [laughs] because it really doesn’t help, you know, that comment, yet so many people say it, and it doesn’t help. 

 

Martin used the Internet for information and emotional support.

The internet, has been such, such an important tool. We couldn’t have done half the things we’ve done, and it’s made clinics throughout the world, easily accessible to you. Both through communication, research and talking to other people who have been through it, as a support forum it has been absolutely second to none .And you know, people we’ve met through it and other people in the same situation as ourselves and those people you become your own self help group because you meet people and a community forms. And there are so many different facilities now, INUK. There is one we are heavily involved in and that’s fantastic but there’s loads of other boards as well which focus slightly on different angles, depending exactly what you’re looking for. 

 

And anybody I meet who is going through this, I mean like people at work, the first thing I do, is you have got to get on to these sites because the access whether its emotional support or facts and figures, the information’s there. And if you are looking at a particular clinic, there will be a board specifically for that clinic, the people who are going there can tell you what, not some brochure or website from the clinic but real people, just like you, that have been there that will tell you what their experience is like. And lots of them. So you can really get this firsthand experience. And without that how can you make these judgements? You know, we wouldn’t have even known of the existence of the clinic we went to without that. But it is no different when you are dealing with them to the clinic in the UK, which was an email you could correspond just as easily. And so the internet, has opened a massive amount of opportunities and doors for people.

 

And but it is not just about fact finding, I mean we tend to be very informed and anything we go along to we tend to know, half the time, more than the people teaching, whether it was adoption, whether its ICSI or blastocyst or, we need to be informed, we need to know. So we tend to do a great deal of research and that is one, an element that is great but the most important one is the emotional support. But guys don’t use it.

 

Have you used it?

 

I’ve registered [laughs]. The reason I will, I would use it, but there is nobody on there at the moment on the guy’s forum, so I am actually to registered to go on and I actually get updates and find if there is anybody on, and there is nobody using it. There is no, the guy’s community just doesn’t exist. So I’m a helpliner. I do take phone calls from people if they want to talk about it. But on the internet guys tend not to use the support structure. Which is interesting. I think it is very indicative of the fact that the guys still don’t really talk about it. We tend to bottle up more. They are perhaps more embarrassed about it. Which is a shame.

 

To try and give your friends the space they need and the support they need was the best you could...

Be tolerant and you can’t fix it with all the will in the world, and don’t tell the couple to relax it will happen. Because in most cases it doesn’t. Be tolerant and understanding of perhaps where they are at, give them the space they need, but the support they need. Don’t be afraid to talk about it, or bring it up as a subject. It’s a bit like a bereavement sometimes, people don’t know what to say and therefore avoid it. It is not a taboo subject but a little bit of tact. Don’t talk about the friend down the road whose just had three children. You know, they won’t want to know about that. Just be sensitive to what they’re going through and be there to support them as much as you can.