When you came back to try to have another baby. Where did you try to get information at that point? I mean obviously the internet was barely around at that stage.

That is right. I was completely reliant on what the consultant told me, which was very little. Or consultants and I mean there were no books that I was aware of. I came across the HFEA in some of their booklets on storage of gametes and you know, on egg donation and to do with the consent and the rights of the child and all that. I mean obviously we read all that. But it is not actually about the tests and you know what tests. I mean I know now that a hysterosalpingography probably would have been extremely useful to do. But I didn’t know that there was such a thing then and it wasn’t mentioned. So you know, it is I think there are huge issues around making information available to patients and allowing them to have a part inin the actual tests and to feel that they have an important role to play. Otherwise you know you feel as though everything has been done to you all the time and other people are making all the decisions and you know you are just the [laughs] at the end of the line really. Which is sad.

I think volunteering for an infertility support group has been re-, was really really helpful for me in terms of, just about coming to terms with the whole issue. I, I think until I’d dealt with the issue and kind of got used to the idea of us not having children, I wouldn’t have been particularly useful for the support group until that point. I needed to be okay with it myself, because I think otherwise I would have been dredging up unresolved feelings in myself. When really, you know, the, the whole idea of being at the other end of a support telephone line is to be empathetic to the person that you’re speaking to, rather than saying, Oh, my God, it was exactly the same for me. That really isn’t appropriate. It’s, you’re kind of using your experiences and your knowledge of the feelings that you had to help that person come to the same situation that you’re into.

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.

So in terms of the internet you used it sort of to find information and also just as a sort of way of finding people to talk to about it, is that right?

Yes, absolutely. It was finding information, firstly about the condition. About the various different things that were wrong with us. Then researching clinics, so especially, it was especially helpful when we came to make our decision to go overseas, because how on earth would you find out, if you didn’t have the internet, how on earth would you get unbiased views about clinics in Spain for example, or in the Ukraine or wherever you choose to go. Whereas there are communities on line now, with so many people who are able to give you unbiased, very practical advice about it. And also the support when you are doing it as well. So I think also the internet probably helped me because of the sort of forums and chat room type things that I got involved in. It did mean that I probably wasn’t obsessing about quite as much to my husband as I would have been, had I not had those outlets as well.

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.