Infertility and fertility treatment – seeking information and support

Because specialist appointments were often brief, Jacinta obtained further clinical information about infertility and fertility treatment from scientific articles and watching live talks with doctors on social media.

Interviewer: Throughout this whole journey, all its different facets, where have you gotten information from primarily?

Jacinta: So we have seen doctors pretty regularly through it so I’ve probably been seeing a specialist nearly every month for the last few years really. But then I do get a lot of information from the internet as well. I try and stay away from forums and non-evidence-based stuff so anywhere that I can get something that’s an evidence source is good for me. I’m fairly health literate because I actually work at a hospital myself so I’ve got a decent idea on how to read journal articles and how to find that kind of thing.

I think between seeing a doctor and getting some information from them, but you are only in that appointment for 20 minutes at a time. Most of the rest of the stuff I get is from the internet.

But because there’s just so much emerging science as well it is really tricky to decipher what’s a good study and what’s not a good study. Everything seems really experimental in the IVF space so I think that can be really challenging. I know what I found helpful actually, there’s a few really great doctors on Instagram doing a lot of things and just chatting about the procedures. I’ve found that really helpful listening to a health professional and you can see that they are actually practising and doing this work every day and they’re able to interact with people where you don’t actually have to have an appointment.

Because you do get into appointments and forget everything that you thought you might ask the doctor and you can ask something that you might feel embarrassed to ask or might seem silly when you’ve got kind of that little bit more anonymity with the internet.

So there’s a few in particular that I’ve noticed that are doing Instagram live kind of things and people can ask questions and they’ll answer them as they go.

I think it does provide access to these specialists where you might not – so I’ve noticed a lot of people may be asking questions about, “Well when do I know it’s time to actually go and see someone?” Because it takes a lot of guts I think to even go to your GP and say, “Hey I’m really worried about this.” Let alone then turn up to a specialist and you don’t know what they’re going to do, what tests they’re going to run, what you’re going to find out.

Elena shared her concerns about what she perceived as a lack of good quality, non-commercially driven research and consumer information about fertility treatment in Australia.

I asked a lot of questions and I’d go away and I’d do a lot of research. Throughout my journey it was concerning that a number of things that are advocated for women or offered to women, there’s very little quality science behind it and very little that’s been done outside of organisations that make a lot of money from IVF.

So the only place I found really good information was through the UK fertility regulator¹. I thought it was quite shocking that a lot of treatments that weren’t advocated by the UK fertility regulator are pushed here in Australia.

It is a product of the research as well, I think there just needs to be more science done that doesn’t involve fertility services that are there to make money. It needs to be done by public institutions but I think if we had more publicly funded IVF that was wholly publicly funded, then that would provide the benchmark of what could be achieved. That’s the case in the UK where they do have publicly funded IVF, so they only implement all these extra add-ons that have some really good quality science behind them. There is a lot of science out there around chromosome testing, but when you look at the quality of the research it’s much more questionable, it’s very leading research. The basic research that you would expect hasn’t been done.

¹ VARTA is an Australian resource which provides non-commercial, evidence-based information about fertility treatment including IVF add-ons – please see ‘Further Information’ below.

Megan outlined some of the gaps she had noticed in the available information about infertility and fertility treatment.

Because I have a background in biology, I feel comfortable reading scientific papers, but I know not everybody can do that. So I think when I’ve been unsure about the numbers behind something, or some of the drugs people are recommending, or things like that, I felt comfortable to research the scientific evidence behind those things.

That said, I think there’s probably a real gap. I haven’t found a lot of websites that easily explain or translate some of those papers into helpful terms for someone who’s not comfortable reading them, and I think there’s a real opportunity there to present some of that information in a more layman-friendly way, and to have more examples of lived experiences.

It’s also tricky to know… Because IVF is treated so differently in Australia and the UK, and the US particularly, if we’re looking at the main, major, English-speaking countries I suppose, where IVF is quite mainstream – the way that different treatments operate, the different drug regulations, the different treatment options, are very, very different. So I think sometimes it can be hard sifting through some of the information on the web, because you don’t know what’s applicable to Australia. For instance, in America, it seems like transferring more than one embryo is a little bit more common at some clinics than it is here; it’s generally not done, here. So there’s things like that, that I think can sometimes feel hard.

Aisha participated in online forums with others going through IVF, at first as a ‘silent reader’ and later as a contributor. The experience was both helpful and challenging.

Aisha: I was reading on online forums about women who were going through IVF at the same time, and I saw a lot of them who were – they were some that were succeeding, some were not succeeding.

I was mainly going on for information. I found that was where I learned pretty much everything about the IVF process, about questions to ask my doctor, about other issues that people had faced that were similar, about people going through similar journeys and reading their journeys. But I didn’t really take part very much. I was mainly reading. It was only after I finally got pregnant then I started to take part in the conversations.

Interviewer: And what was that like?

Aisha: That was good, it was just like an online due date mothers’ group to discuss for women who had also got pregnant through IVF and who were all due around the same time. There were also online groups of people who were going through IVF at the same time, but I didn’t want to – I was just reading along and not actually writing. It’s anonymous on the forum, but I didn’t want to tell everyone about my journey and then having it not work. I thought that would just make me feel worse if I started sharing my journey with others and that did not work over, and over again.

So I preferred to just kind of be a silent reader, and then when it did work, then I felt like I could join in the conversation with others who had also got pregnant at the same time. That was really good because then we all exchanged – everyone who had got pregnant through IVF and had been on a journey to it, and so you could empathise with each other. I also saw other people who had got pregnant and then who lost their – who had miscarriages in the first 12 weeks. So that was also quite painful to watch and I’d read stories from other women who had had miscarriages, all the way up to the end of their pregnancies, so I was very, very anxious being pregnant.

Libby reflected on the kinds of information she accessed online. She wishes that there was more qualitative research on experiences of infertility and fertility treatment to ‘balance’ scientific and clinical research.

I did Google. I think mostly Google and any articles that my mum, or my dad, or someone would send but again that’s all from Google. But even from doctors I mean it seems like every doctor tells you something else and whatever their area of research is, whatever type of person they are, they look at different things.

I wasn’t reading the blogs because I thought they’re too personal and it’s that person’s opinions so I tried to avoid the blogs. So, it was mostly I would Google and put in and then give me a website of a clinic that has articles about certain things. So, it was more the articles that were added by other people, or from that article I would go to another article or that clinic would recommend another clinic. So, I tried to avoid blogs because I’m a different, it’s not my body. And obviously the blogs do pop up and you do kind of skim a little bit. They were either too optimistic or too negative so I was a bit scared.

And I think qualitative research needs to be more done, I love qualitative research so I’m a bit biased there and I do qualitative research myself. So, I think there is a huge difference between a blog and proper research when it comes to qualitative work.

And there’s not enough qualitative work about fertility, I think. It’s mostly statistics, it’s data, it’s the blood test, the reactions, how the brain works. So, I think there needs to be a balance with how actual people feel.

Sarah, a solo parent by choice, relied on family members, colleagues and friends for support while going through fertility treatment.

I didn’t do counselling. I had thoughts about it, but my mum was really good. She had listened to me a lot. My work colleagues were probably one of my biggest supports. I was really, really close to my work colleagues. They listened to me every day [laughter], with all my anxiety and things. I also had a really close friend; she’s still my close friend, my best friend, and she was going through fertility treatment around the same time as me, so we would talk a lot and share our thoughts. So, it was mainly just family and friends that I gathered that support through.

Apart from telling her mum and sister, Kate has been less open with family and friends while having fertility treatment for her third child. She reflects on the reasons for this.

Kate: I feel like everybody was super supportive first time round. We’ve always been pretty open with people close to us about what’s happening, especially me. This second time round – or this technically third time round – I haven’t been as open because I’m a bit over talking about it.

I shared with my mum that we were going to do IVF because I needed her help with the kids. But I haven’t been as open with other people this time round. I guess there’s that stigma around, “You’ve already got two kids so why would you be doing IVF? You should be grateful for what you’ve got.”

So I guess I am mindful this time round with what people could think about, “Are you just wasting your time? Shouldn’t you just call it a day and be happy with what you’ve got?” And people do tend to say, “Oh well, at least you’ve got the two kids,” and whatever. Which of course is fantastic and I know I can move on with my life when that time comes. But it still sucks to have that choice taken. And ideally we would have had a third child two years ago.

Interviewer: And how has your mum’s reaction been?

Kate: She’s been great. She was really supportive. Because she had three kids she was like, “Having three kids was the best thing I did. I think it’s great. You guys should throw everything at it”, that sort of stuff. She’s been really supportive.

My sister has been supportive. I didn’t tell her initially but I just explained to her, “I can’t be bothered talking about it. I don’t want to know about another herbalist or naturopath. I just want to get on with it.” So they’ve been great.

Prayer helped Mary to accept her fertility problems after struggling to be able to talk to family members.

I’ve learnt to live with it and deal with it in a way that it’s not dragging me down like it used to. Because I found myself really withdrawing from just society, family and society. I just stopped going anywhere, stopped talking to people and stuff. Because I felt like I wasn’t able to share with anybody my struggles because it either felt like I was burdening somebody or if it was just all in my head and people like, “Yeah you’re just making it up. That’s impossible. We never heard anything like that.” So I just stopped talking about it altogether. And my go-to was prayer. That’s how I pulled myself out. A lot of the time was just prayer in my own head.

As Melissa and her ex-husband had decided not to tell family and friends they were undergoing fertility treatment, Melissa found support through an online group of women going through IVF.

Melissa: When we were doing IVF I told my husband that this was going to remain between us because I didn’t want to be someone that was constantly telling everybody else about the egg collection day or this and that. Particularly my mother because I didn’t want her to have false hope. Mum knew everything that had gone on, I mean one of the times I had an operation, she was the one who took me to hospital, so she knew everything that was going on.

But when it came to doing IVF, and keeping this quiet. You know you can’t, it’s such a big deal. It’s a big deal to try to cope with and to remain positive to get yourself up each time to do it. So I insisted that we just keep it between us and that was fine and it was only when it was over that I told them that I’d been doing it.

Interviewer: So where did you get support from during that time?

Melissa: From the other women who were doing it that I’d met online, a bit from my husband and then my doctor and then the counsellor as well.

I joined two different forums specific to IVF and there was one group there and they were the women who were over 35, and I joined there and during the chats a few of us agreed to join up and actually go out to lunch one day, and we did that. But it was a group where we were always telling everyone, that was where I confided what was going on, and nobody knew I had completely a name that did not identify me at all, I would tell people, I just completed, or what I’d just done and whatever and everybody updated each other with what they were doing. I found that one of the best areas of support throughout and of course another way to measure myself against other people.

Marika found the counselling she and her husband had through their IVF clinic quite limited. She later had additional counselling and feels mental health support at the time of going through IVF would have been helpful.

Marika: The mental health side was not part of my IVF journey. I think at the clinic we were at, we had one visit, one or two visits with, I don’t know, even if it was a psychologist, or a social worker, but they did have someone in their clinic who you would speak to, but that referral kind of a conversation with them was around making a decision to do multiple embryo transfers and then deciding what you might do if you have multiple embryos left over. So it wasn’t embedded as part of, and not everyone will need that potentially, but I certainly would have benefited from that kind of support being built in to the care package of going through IVF. 

Interviewer: Did you ever seek out any kind of further psychological or counselling support? 

Marika:  Two years ago I went back and did therapy for about 15 months and did trauma-based therapy. And that was really unpacking how IVF and what I went through in that period, how that had built on the previous trauma.  

So had to work through those things and I think it was, I was doing my PhD at that time as well. So I think I had created a very stressful… And so the underlying things started to come to a head and I needed to just unpack them and put them to bed in a more productive way. And so potentially I look back and go, if I had of had that support and done that work and that it had been more of a conversation during that period, it might not have resurfaced in this way, in this more recent time. 

Claire and her husband had extra counselling to support their relationship during fertility treatment.

I was seeking out kind of regular counselling to be able to talk through particular things, about how difficult it was. I mean, it also plays a big impact on your relationship as well. So there’s things to navigate too. I mean, there’s two people that want this, really badly but it’s about being there for each other and being there for yourself. And, does being there for the other person take away what you’re giving to yourself? You’ve only got so much in your glass to be able to give but you need to be able to get it filled from the other person.

Dealing with the impacts was really tricky. Sometimes we’d do it really, really well and we’d just find ourselves communicating quite clearly about how we felt, and sometimes we would do it awfully, and it would end up in arguments and huge disappointment because the other person didn’t know what the other person needed or wanted or how to support them through that. So I’d say that there would be a mix of how we dealt with it.

That was – it made all the difference to me to be able to process things with someone who’s totally unbiased and who’s able to provide some really clear kind of advice and support around that. A lot of the IVF places provide those counsellors, so that’s kind of a really good support to be able to access to get you through that.

Because there’s, as much as we wanted to be able to communicate well about it sometimes it just didn’t happen. It was just really, really hard, the – the level of emotion that you get to around it is just so difficult that, yeah… You have to be superhuman to be able to just kind of breathe [laughter] through it with a really high level of communication the whole time I would say. And we weren’t superhuman so it definitely had its ups and downs.