Experiences of health practitioners and health services

Because Skye lives in a remote part of Australia, she and her partner will have to travel to the nearest city for fertility treatment. She describes how she chose two IVF clinics to visit.

We also live in the middle of nowhere so it means a lot of travelling for us to do it. So it’s a quite a big expense for us to not only do the IVF but then time off work and travelling and all of that sort of stuff added on. So it’s not just a – we’ve got to plan it because obviously that’s a lot of our savings that is going to have to go towards that as well so…

I’ve got referrals and in September we’re going to see two fertility clinics. I’m only seeing two because we don’t have a lot of time down there. We only have one week. So I’ve asked to see two separate ones and see which one we feel more comfortable at and then we’ll make a decision from there and go from there with them.

I reached out on a Facebook group where people give recommendations for hairdressers and stuff like that and said, “What IVF clinics have people used?”. I got so many responses and so many women sort of reached out and were like, “Look, if you need any help this is what I did. This is where I went. If you need just to chat about it just let me know”. So there was – it was really, really nice and I think that lots of women feel like it’s so, they’re very secluded because women don’t talk about it that often. Unless you have a close friend that’s going through it, who do you reach out to talk to about it, you know?

So – and none of my friends or my family have got any fertility issues. So I think that was probably the best thing that I did, I think weighing up all of that and everyone’s opinion has helped me a lot to choose what IVF clinics to go to.

The most important thing to me was that I got – so a couple of people from that group had said a specific one and they had said this one because they have a really good bedside manner, very attentive and caring and that sort of thing. They seemed to really be interested and wanting to, you weren’t just a number, or a client, and that was what I really wanted. Because obviously it’s a lot to go through emotionally and that so if you’ve just got a little bit of that it’s just going to make it easier.

Then the second one they said were very good as well, however, they bulk billed. So I thought, ‘Let’s try one that doesn’t bulk bill,’ – we’ll try one that does; and then we can just see which one we like the most when we’re there and once we meet with the doctor we can see which one we prefer.

So, that was probably – money was, the cost is a big thing. I really don’t want to be paying all of my savings and – because then you’ve got to pay for a baby after as well. But at the same time I kind of said, “Well, you know, how much would we spend on going on an overseas holiday and stuff like that and how much,” so – and we’re pretty lucky that we live in such a rural area. We get paid quite well and I get housing through my work and things like that, which we wouldn’t, but – but the downside is we live in a really secluded rural area and we don’t have anybody here so we have to pay for the expenses to get down there and back and things like that.

Libby did not do much research before choosing her first IVF specialist and clinic and was not happy with them. She felt much more comfortable with her second specialist.

Libby: So when I went to the doctor I was 40, almost 41 and she said, “Well I think we need to… Straight away to IVF in your case.” The fibroids were under control, there wasn’t any big issue with them – “But you still need to watch them and make sure they don’t get bigger, doesn’t impact your cavity, it’s all good.”  

I don’t usually trust doctors much, especially when it comes to something to do with my own body. With a common cold and stuff like that I’m fine but when it comes to deeper things, I realised that, “Oh okay, she’s moving straight to IVF”. We did the tests, yes AMH [Anti-Mullerian Hormone] is low, blah blah blah all that. The rest – you’re healthy, vitamins are all in place. He’s fine. He’s fine. So, he’s always fine so there wasn’t much about him.  

So, $300 test for his sperm count and morphology and all of that was just dismissed in one second. That doctor at that time was very much focused on science, she believed that – I don’t blame her, some doctors are like that, “It doesn’t matter what you do you’re 41, it’s going to be very difficult for you to do anything regardless of your lifestyle.” I don’t smoke, I don’t drink, yes, I had coffee from time to time and then I thought, ‘Wait a minute, this is it, it’s all on me?”  

So that was the second punch I got that it should’ve stopped me from moving forward but I did not. Because I’m more into the holistic approach with acupuncture and taking herbs and she dismissed all that, “No, it’s you’re 41 so you’ve got to face your age. Doesn’t matter what you do, it’s your age. We’re just going to do our best”. 

Unfortunately, I still went ahead with this doctor in spite of all the red flags and obviously it was horrible because I felt I wasn’t supported. 

Interviewer: Did you go to a GP first? 

Libby: No, I actually googled her and it’s like people say the first bus that came you got on and I tell students not to check the first thing that pops up, that’s what I did. So, I went against all my values and principles and beliefs and what I preach, I didn’t do. So, I clicked on the name obviously and I said, “Oh, she looks interesting,” and the website looked very good so again that fooled me.  

And even when I went to her clinic, so I got a referral but then I went straight to her clinic and I didn’t really like her clinic honestly. I didn’t feel, it was mostly about herself, it was pictures of herself. 

So, there were a lot of red flags, I don’t know what I did. Either I was desperate, I guess no-one stopped me, well they couldn’t have anyway, and I wasn’t ready for IVF, I knew that I wasn’t ready, I was scared, stressed. All the things they tell you not to be, I was, so yeah. 

So I started researching new clinics and Facebook, I think it listens to me [laughter] or I don’t know what it does, it popped up with another feed for a different clinic and I thought, “Oh okay,” and they had a workshop.  

Then I came across this doctor who presented at the seminar and I said, “You know what, I need some help.”  I had a nice rapport with her from a few discussions and she’s like, “Okay, come in three weeks.”  

So, we caught up, she totally put me – I liked her, I felt comfortable. She also mentioned that, “Yes, I think your lifestyle, you need to improve your lifestyle. You need to live a less stressful life. You need to pay attention to your husband as well.”  And I thought, ‘Oh okay, wow finally one that doesn’t focus only on the numbers and the science and she takes a different approach.’   

Not that she can when she’s constrained by the IVF clinics obviously, but she did not dismiss what I was trying to do on the side to help with the cycles and she put me on all minimum doses of everything. So, she said, “I’m going to let your body to take control of it, we’re just pushing it a bit. You don’t need a lot, your body’s still doing pretty well, I’m not going to disturb the flow, I’m just going to help it. 

So, yes, I felt much better. 

Ruby outlines the factors that were important to her in choosing a fertility specialist.

Interviewer: What was important to you in a health practitioner?

Ruby: Well, that the doctor had helped same-sex couples, that she was a woman, someone that I guess held views that were just aligned with ours about the ethics of the process. Our doctor was very considered about a lot of issues that I think some doctors might be a bit more cavalier about, for instance, the implantation of multiple embryos. She said to us in the first interview with her, “Everyone wants to know if I’ll do multiple embryos so that they can have twins. I will not do that. You need to go and talk to somebody else if you want to go down that path.” So those sorts of approaches were really important to us in terms of how it would go.

Interviewer: What was her reason for not doing multiple embryo transplants if the couple wanted it?

Ruby: Because the risk of having complications in pregnancy and for children born out of a multiple birth scenario doesn’t justify the parents’ desire to have two babies at once. So she was really, as you can probably tell from the things I’ve said, she was very sort of down to earth, very – she was pretty risk-averse in a lot of her decision-making. She was very reluctant to suggest things that were on the fanciful end of the spectrum, which you hear of people doing.

Kim changed fertility specialist as didn’t gel with her first doctor. She describes how she researched and chose her second IVF lab and specialist.

Kim: When I started researching it and looking into how you should pick a specialist the advice that I came across was actually you need to pick your lab. That was the most important thing because they’re the ones who do all the fertilisation and all the freezing and everything like that. So you’ve got to pick the lab really as your first choice and then you pick a specialist attached to that lab.

So after looking into it I probably narrowed it down to about three labs that I heard were – that had good reputations. But again the one I was with I think is pretty much the best or one of the best anyway and it was again the location was good for me. So I stuck with that one.

So I ended up just reading a lot on forums and listening to podcasts and basically decided that because I wasn’t 100 per cent with the specialist I’d been sent to and because of my age I basically have sort of one shot to get this right. I don’t have the luxury of time. So I decided to pick a specialist with the CREI [Certificate in Reproductive Endocrinology and Infertility] speciality.

Interviewer: So that’s an extra qualification in endocrinology and fertility?

Kim: Yes.

Interviewer: So how did you come to know about that?

Kim: I think it was when I started looking into all the different doctors at the clinics. I decided that I wanted a female doctor and so I started looking through the clinic profiles and I saw that some of them had this extra speciality. Then one of the podcasts I was listening to actually explained what it was and why it was a higher level of specialism than some of the other doctors. There’s only a handful in each state I think.

So there’s a register where you can go and just look for doctors who have got that specialism in your area. So I found that site and I looked on there. I narrowed it down to two and then I actually went on one of the Facebook groups and asked for a recommendation. I said “I’m looking for someone who’s got this speciality and I’ve narrowed it down to these two doctors. Has anyone else used them and what do you think?” and for one of them I got mixed responses. Mainly good but a few not so good reviews. Then for the specialist I’m with now it was all positive.

Megan’s endometriosis was not diagnosed until she started trying to have a baby. However, she felt the first GP she discussed it with thought that she was imagining her period pain.

I think for whatever reason, probably a lot of misinformation that’s out there, I just assumed this was normal and part of being a woman. There was no endometriosis in my family, as far as I was aware at that point, so it never occurred to me that this might be an issue that I was facing. I just thought I had bad periods.

I do remember in the year… I think it would have been leading up to our wedding, was when it really started to get quite bad. So I would have been about 29, I think, and I started to realise that this sort of level of pain was probably not normal.

I have wondered at various points whether I was more aware of it because we were trying now for a baby, and I was monitoring my cycles much more regularly, and understanding better when I was ovulating, and how long my cycles were. I was being much more observant of what was going on in my body, and started keeping a journal at one point, to try and work out if there was a pattern. So I think it was only when I started to pay much closer attention to what was going on, or not going on, in my body that I started to realise that there was a definite pattern, and it probably wasn’t normal.

Unfortunately, the doctor that I had at the time, possibly because I was experiencing this in conjunction with trying for a family, seemed to think that it was all in my head and I was making it up; and she actually said to me in the very last appointment that I had with her, “You just really want to be pregnant, don’t you?” Which now feels like absolutely gaslighting me. At the time, I just thought, “Oh, I must be silly. It must be nothing, it’s all in my head. I do just want to be pregnant, so maybe I am making this up. Maybe I am making a big deal.” In hindsight… [laughter] That’s certainly not true, but we know better now, so.

Mary attends public specialist clinics for help with several health issues impacting her fertility. As a result, she sees different doctors each visit.

Interviewer: And with the appointments, do you see the same person, or is it like a clinic where you would get a different doctor each time? 

Mary: So every appointment that I’ve had at the specialist clinics, even the gynaecologist, they’re all different doctors.  It’s not the same doctor every time.  So it’s like I don’t really have a doctor that knows what I go through or my history.  It’s all just read on that day, the doctors rather than one that actually has followed through since day one.  But, different doctor, even with the endocrinologist.  It’s all different specialist doctors as well. 

I tell my story every appointment. [laughter]  Even when I go into the emergency for my polycystic ovaries it’s… Nurses and doctors.  I will tell my story five times in that one night. It almost becomes like a transcript where I’ve memorised my story and I just say it. [laughter]  

Tallace describes some of the challenges she, her ex-partner and her current partner faced navigating fertility treatment and pregnancy care as members of the LGBTQI+ community.

I had to see my GP for a referral to a fertility specialist.  That was no drama… At that time, my GP practice was like an LGBT specialist practice, so I’d say they’d be fielding these kind of queries regularly, and they were happy to help.  Initially, I saw a different specialist, and she… My partner had a lot of health challenges, and one of them was also being HIV positive.  So, that was a drama with this first fertility specialist that we saw, because they ask that you have STI screens as part of your intake process, and it’s to protect themselves.  They don’t want to be accused of infecting you with anything through the fertility treatment.  We said that he would prefer not to do a STI screen, because we definitely knew what the result would be; and that was not handled very well by the specialist or the clinic, so we changed specialists then.   

That was a quite traumatic experience, of forcing someone to be out about their health status, when that’s really none of their business.  So, I think that was probably the worst misstep I’ve experienced.  And potentially, if they really did need to have that information, it could have been obtained without the level of callousness that marked it.   

But in terms of my face-to-face experiences with health professionals, I think that I’ve been really fortunate to be accessing that treatment in a big city.  So, potentially I would have had a different experience elsewhere, but it just seemed quite normal, despite all their forms not being quite right.  At the clinic we went to, it seemed quite normal for LGBT people to come through there.   

But I have to say that… As an LGBT person, navigating the pregnancy care has not been as smooth as accessing fertility care.  For example, at the regional hospital where I had a midwife intake appointment, when I told her that it was an IVF pregnancy using donor sperm, she didn’t ask me the next question in her schedule, which was about whether I was partnered, and she marked me as single on her system.  And for me, I found it weird, and I corrected her at the time.  But as I was driving home from that appointment, I became more and more upset, thinking that that could be indicative of the way they might treat my partner in a birthing situation, that she would be marginalised somehow, or treated… So that was not so good.   

I just thought, as I was driving home, I just thought, ‘Wow, that woman can’t even imagine that gay people exist.’ [laughter] Like… [laughter]  

I actually gave them some feedback on their feedback portal, on their website, and I got a call from this fellow who was their PR person, who said that he was really surprised that this had happened, and there’s even an obstetrician at that hospital who is gay, and also the guy who called me, his own son is gay.  So it was a bizarre response, because I was kind of like, “Yeah, but I’m telling you that this is what happened, not for you to tell me that it’s impossible that that happened.”   

Because his son’s gay. [laughter] 

Aisha found taking public transport to the IVF clinic and waiting long periods of time for a blood test stressful as it meant she was often late to work.

I found it quite stressful because at the clinic there were – because I had to get multiple buses to get to the IVF clinic.  I remember it was very stressful, there were very long lines in the morning waiting for blood tests.  So I’d get there half an hour before the clinic opened and already there would be a long line of people.  

I’d be getting to work late every morning. The nurses were – some of the nurses were quite friendly, some were quite abrupt.  I think it’s got better since then; in the last five years.  So the lines seem to be shorter and things but I think that was – that was the thing, I think, that bothered me the most was having to go there early in the morning and then wait in line for probably an hour just to have a blood test.   

And I’m – people would see me on the bus going in the wrong direction and be wondering where I’m going and what I’m doing.  And I would have to make up excuses of where you’re going or if my boss wanted a meeting somewhere in the morning I’d have to make up an excuse and say I had a doctor’s appointment.

Ingrid appreciated that her fertility specialist was thorough, explained technical terms in everyday language, and was located nearby.

So the fertility specialist, I really loved.  My one specialised in particular with older pregnancies and with multiple miscarriages.  The clinic, she wasn’t a standalone fertility specialist.  The clinic that she worked out of – or she works out of a few – but when I called, they recommended her specifically because they obviously listened to my concerns in terms of my age, multiple miscarriages.  Also, it was very convenient that they’re located five minutes’ walk from my front door.  

She was very thorough, and explained everything in layman’s terms, if you like, because when you enter the IVF world, you come across a lot of terms and types of treatment that you haven’t really had to stumble upon before.  So she explained everything to me, gave me more than enough information about the IVF journey.  

She was very thorough, always there to answer any questions.  Would even… If I had any questions after… If I’d forget to ask a question during an appointment, I could always phone her and she would be available to answer my questions without having to do a consult, or I’d send her an email and she’d reply. 

Hannah experienced complications after surgery to remove uterine adhesions. She describes the coordinated care she received following as a ‘village’.

But to cut a long story short, my uterus didn’t heal after that, all of those procedures, and I had no period from November to February, and the IVF clinic was refusing to conduct an ultrasound. I said, “I think something’s going wrong, I’m having a lot of pain for three months”, and they said, “Oh, it’s nothing we haven’t seen before, start taking the IVF injections”. So, I had to sort of go back to my GP, behind their back, and say, “Can you refer me to someone, to check this pain situation?” She sent me to a bulk billing centre. Anyway, so there was pooling of the blood in the uterus, five millimetres, during that time. That was what the pain was – the cervix area was blocked, and the blood couldn’t come out. That’s why there was no period.

So, then I said, “What should I do?” to my GP. She referred me to a specific doctor, who this is his area of expertise, who was amazing, and he basically performed the same operation again – the laparoscopy, removal of adhesions and cleared up inside the uterus, and he also removed endometriosis, a small part of the endometriosis. That was a repeat operation. When I went back to see him again in a follow-up appointment, and I told him the story of what had happened, and just my history in general, he said, “What you need to do is, you need to go and see this doctor”, who he works in close contact with, another IVF specialist, so I went to his IVF clinic, and he looked at everything, and he said, “Well, you didn’t – your body was trying to have a period, but it couldn’t, that was the issue.” And I said, “Exactly. You know that, I know that, but nobody at the clinic could tell me that.” They just said, “Start taking the injections.”

So, with the new IVF specialist, and the adhesions / laparoscopy specialist working together, one was assisting me with the egg collection and the IVF side of things, and then, the other one was assisting with any pain around the abdomen area, and they would call each other, and send reports, and that was a sigh of relief. It just shows that it takes a village, and you need all of these people involved, including the counsellors, and GP, nurses, husbands, family members, the list goes on, because it’s a lot to be dealing with, especially for the amount of years we’ve been doing it. So, I think that was seven years down the track, so I was ready to start IVF with the new doctor.

Marika’s experience of childhood sexual abuse made undergoing fertility treatment very difficult. After telling her gynaecologist, together they agreed on some changes to Marika’s care that made her more comfortable and gave her a sense of control.

As a child, I had a few years, there was a period of sexual abuse, which I hadn’t talked about, once I started IVF and then after a few years in, it was becoming really complicated and I’m like, ‘I have to have a conversation about this or I can’t continue. Everything’s becoming so mixed up.’

So by this stage I had developed quite a good relationship with my gynaecologist. She was a very gentle and empathetic person who just really took time with me and we were getting further along the journey. And I also had thought about what, how that might play into infertility as well, having a trauma history. And also if that played a part into developing physical things. And I think that was also an element potentially tied in with the pain that I experienced with having periods.

So it was all very layered and so very hard to disentangle and work out what was what, and then it just kept getting more and more layers on top of that. So it got to the point where I had to have a conversation with my gynaecologist and that came up and I just said, “Yeah, it’s not working. I can’t come in and have another ultrasound. It’s just too much.” So we talked, I talked with her and talked about things we could do. And so she spoke to the nurses and put it on my file. So then it was very, a discussion she had so I didn’t have to repeat every time I came in to say how I wanted things to be done. So she helped me get that control, sense of control and feel comfortable and then people started talking to me and checking in to see what I was comfortable with, rather than them just proceeding, I’m just the body on the table and they’re just doing their procedures on me.

And saying that doing the egg collections and other things and implantations rather than the other clinicians in the clinic doing them, we always lined things up so that she was available to do those. And those sorts of things were really, really important to be able to keep going. So then having those things in place helped me realise, ‘I can be in control of this and I don’t have to relive things being done to me. I can be part of this’.

Although Aisha had a good relationship with her fertility specialist, she felt she had to advocate for herself and ask him to try different things.

I think my fertility specialist is probably quite old fashioned. I think, he’s in the later stages of his career and he’s retired as an OB-GYN [obstetrician gynaecologist]. And I think, I have a good relationship with him but I think, I’ve been the one that has had to – and I’ve seen this a lot online, I’ve been the one that has had to ask him to do things differently. So, I’m the one that asked for the AMH [Anti-Mullerian Hormone] test, he didn’t tell me about it.

And then when I went back for my last cycle with my own eggs I asked him, “Can we change the drugs and use something different? What can we do about my progesterone going up prematurely? What did we do with the cycle when my son happened? How come that one worked? What can we do to recreate that cycle?” So I feel like I definitely had to be the one to make changes.

I’ve read so many online stories I think where the women are giving each other all the hints and the tips and the advice about what vitamins and supplements to take and what to ask your fertility specialist about and what to challenge them with¹ and what to suggest and I really think, I don’t feel like he’s doing something wrong. But definitely I think in this process facing so many women, we really have to advocate for ourselves.

¹ Information shared on online forums may not necessarily be evidence-based.