Andrea

Early signs of problems with menstrual periods and first seeking help

Well, quite a long journey for me. So, right back when I was sort of a teenager, and first getting my periods, talking to my best friend who I was very close with, she used to comment on how she felt mine were so much worse than hers, and weren’t normal. I used to get a lot of pain, they used to be heavy on occasion, so for me, that was my normal, but for her, she would make comments about that, which I kind of dismissed. You know, no one can really tell each other’s pain thresholds, and maybe I just need to suck it up. So, I didn’t really do much, or consider much, about that then.

Then, as I kind of got into the end of my education, end of high school and through university, and started the very early stages of my career, I started to question that maybe something was wrong, from a health perspective, because the pain was not only getting a lot worse, and had increased over the years, but the flow was pretty bad, and I had to live, I guess, you know, without being too graphic – I had to live wearing the heaviest possible pad you can imagine, and tampons were not suitable for me. So, I really reached a point where that was happening kind of every period, whereas it used to be every one out of a few, and it was also getting to a point where it was starting to impact my life. I would struggle to go to work on some days, I would struggle to be able to attend social gatherings and do things, because on certain days, they were really what I called quarantine bed days, because it wasn’t really safe to leave the house. It was just easier to be home, in your bathroom.

At that point, when the pain was like that, when it was impacting my life, and I started to question it, I decided to see my GP and ask that question. I was, I think from memory, around maybe 23, 24, when I did that. So, from a quick examination, he agreed that what I was describing, and what his assessment was, was that it wasn’t normal, and we should investigate, and just find out what’s going on.

Being diagnosed with uterine fibroids and warned about potential fertility impacts

So, I had a referral from him to see a gynaecologist. She then had a consult about all of my experience, sent me off for some ultrasounds and scans, and through those ultrasounds and scans, made an assessment that she believed I had fibroids, or a fibroid or two, possibly, in my lining. She explained to me that it was likely that that was causing not only the pain, but also the heaviness of the cycle.

So, from that discussion, we organised surgery, for her to actually go in and (a), have a look, but also remove what she’d seen in those scans. So, that was very scary, because that was my first kind of surgery, for me. I had to have a surgery previous to that, but that was a different kind of surgery, so I was a little bit anxious about that. But once that had been completed, and I had an appointment post that procedure with her, it was only at that point that I was made aware of what this condition was, in detail, and also what it could mean for me, in terms of having kids.

To give you a little bit of context about my life at that point, I was 24, maybe going on 25, I can’t quite remember, but around that age. I was now a home owner with my partner at the time – he’s now my husband. We’d only been together for, I think, five or six – sorry, six or seven years at that point, and I was keen for that relationship to be more than just a partnership. You know, we bought a house, I was quite keen to start thinking about getting married, not for the sake of having children, but just because I was ready for that. He certainly was not ready for that, so we weren’t in the getting married phase of our life.

So, with that context, I sat down and had the post-surgery appointment on my own, with the gynaecologist, at which time she said that she had removed a number of fibroids, but couldn’t remove them all. She described how they had embedded, and were embedded, in my uterus lining, which made it very difficult to remove all of them. There were lots and lots of little ones in there that she couldn’t kind of get to. She then said, based on what she’d seen, she thought it would be important for me to be aware that I’d probably – if I had a family in my horizon, I might want to think about not delaying that, if possible. So, that was pretty big news, and I didn’t purely believe her. You know, I’m 24, 25, and I’m thinking, ‘Hey, what do you know? You’re a specialist, but I’m thinking, you know, that’s not right, I can have kids.’

I did present a very kind of concerned response, in the sense that I said, “I’m not married, and I’m not engaged, and I’m certainly not in a place with my partner to be even talking about children, let alone marriage, so what are you saying to me? How am I supposed to take this news, and what am I supposed to do with it?” Her response was obviously total agreeance, and she said, “Of course, just it’s important that you know what you’re potentially up against,” and she said, “Of course, we would never do anything until you’re absolutely ready, and you know, everything – the treatment will be in place if you’re ready for it”, but she said, “you need to know that information.” So, it was a very confusing time, after that. I think I did go through a process of telling myself that, ‘No, that’s not right,’ and you know, ‘That’s fine.’

I think it didn’t – sorry, when I say it didn’t help, it also helped that my periods had finally, for the first time in many, many years, improved, and they were the best they had ever been. I couldn’t remember a time they were that great, and life came back, and I felt good, and I wasn’t in bed all the time, every month, and I wasn’t experiencing pain. It was good. I kind of parked that, and I thought, ‘No, because I’m feeling so much better, I think I’ve got time. No, no, that’s not going to be an issue for me.’

Marriage, moving overseas, and experimenting with homeopathy

I kind of carried on with life from there, for a few years, married my husband when I was 27, going on 28. A few years later, I wasn’t experiencing the periods of the past, they were still pretty good. Then, we made a decision to go and live our life in for a little while, and just experience that whole scene, and travel. We moved over there pretty much straight after the wedding, for a couple of years.

I suppose, leading up to that point, something else had been happening for me was that because I’m a bit of sharer, and I do have a good circle of people that I trust and talk to a lot, there were a number of close friends and family that were aware of what I had been told at that age, and there had been sort of some – you know, trying to be helpful, I suppose – suggestions on what I could consider. You know, there are so many other ways you can address these conditions, and you know, to prolong your time before you have to put that pressure of kids on your relationship, and on yourself.

I’ve never been a huge believer of any of those kinds of Eastern medicines, but also, you know, I’m willing to sort of give things a go, as well. So, one of the things that had been suggested to me was to try some homeopathic remedies, and because I was going to, one person - practitioner in particular, that someone else I know had seen, said you’re going to the best place in the world, with experts in that area, so if you’re interested, that would be a good place to start. So, when we got to, I thought, ‘Well, why not? I’m here, you know, see what this is all about.’ I did some research, found someone who looked to be quite good, and started seeing her. So, we talked about my story in detail, you know, I explained what I knew around my condition, and what experiences I’d had.

My periods, at that point, had probably started to develop a little bit differently, but not to a point where I was concerned. I certainly was starting to remember some of the pain and flow again. So, the treatment that – and I can’t remember what it was, and I can’t remember what it was supposed to do, but it was a daily tablet, and it was supposed to do something in my body, which was really, I think – you know, the treatment option of shrinking them, and getting them to go down, and I guess, working with some imbalances in your system, potentially. Anyway, so I started taking that, and I found – it’s very hard for me to separate my emotional experience in around just being there, and being away from people that I loved and care about, because I found that trying, from whether or not anything that was happening in that treatment was exacerbating how I was feeling, emotionally. I had some very unstable days, very easily upset, kind of very big lows, and yeah, very – feeling depression and things, that I can acknowledge and see now, through experience, but I had some really low days over there, and I would talk to this person I was seeing about how I was feeling, and she was adjusting the dosage, because apparently, there are some symptoms around emotional wellbeing, that can come as a result of doing that.

Re-emergence of menstrual period problems

The other thing that I was also experiencing was a big change in my periods. They were starting to get back to the way they used to be. I was, you know, heading to work, and finding that I needed to make sure I had a fresh pad on in the morning, before I left my home, and then be ready to change straight away, by the time I got there. It would be, like, blood pooling kind of scenarios starting again, which I had many years ago. I was getting concerned about that. Having said that, a lot of what I’m saying now comes from hindsight, because again, while I was in I wasn’t thinking, ‘Oh no, my condition is back in a really bad way, and now I need to get home, and have to have kids, and if I don't have kids, it’s just not going to happen.’ I wasn’t thinking like that, although I had seen it, that my feelings about and my desire to get home, on reflection, were very much about that. But at the time, I thought, ‘Oh no, this medication must be doing something, or I’m just really depressed, or you know, I just want to go home, because [it’s] not a good fit for me, and I want to be back home with my family and friends.’

There was just kind of a whole mixed bag of emotions going on with all of that, and it made it very tricky to work out what was driving what. I never got a better period, as a result of that treatment. You know, I didn’t look back at it and say, “That helped me.” All I did was say to myself, “Well, I gave it a go, you know?” I did it openly, I didn’t do it with the view of, ‘Oh, it’s not going to work, and it’s rubbish.’ I gave it a proper go, for about 12 months.

Returning to Australia and starting to try for a baby

By the time we got to the end of our stay and came back to Australia, I was in the view of, ‘I’ll get home, and the stress will be reduced, and I’ll be happy again, and all of those horrible periods I’ve been having are probably because I’ve been so stressed, and as soon as I’m home and I’m happy again, with my family and friends, then life will go back to how it was before I came to.’ I was also approaching 30, so we got back just before I turned 30. Again, I suppose in my mind, I thought, ‘Well, that’s probably somewhere in the timeframe of we should probably start trying,’ but again, not just start trying because I had a fertility issue, but because I don’t want to be a really old – you know, we don’t want to be old parents. So, we decided we’d get back, we’d resettle into Australia, get ourselves our jobs, new jobs, reconnect with our family and friends, have a year of 30ths – certainly, my 30th and my husband’s 30th, we’d have a good blast with those, before we start the pregnancy journey.

Then, towards the end of that year, we started thinking about trying naturally. So, I’d say it would have been a good 12 months of doing the natural trying. Again, I’m trying to recollect what kind of time points and little bits are here, but one thing I do know is I didn’t want to go and get help, because I was not interested in fertility treatments and IVF, and you know, needles and all of that. So, in my mind, I just didn’t think that was something I needed to consider, and I just thought, you know, like everybody, it takes a bit of time, and you know, you’ve got to make sure you know your body, and time things, and doing all the rest. And some months, I wasn’t as serious about it as other months, but I think when it hit a point of becoming tedious, and we weren’t having any success, and the fun, I suppose, of being in a group of people at a similar age - you’re all trying to start families, you know, we were all kind of doing that together. It started to become a little less fun when my circle of friends were starting to be successful, and were starting to move on and start their families, and yet, I kept getting these negative results.

Surgery to remove more fibroids

So, I guess we hit a point where we thought we were going to have to go and talk to someone, because yeah, this is not great. I also, with that, reflecting on how all my periods had been behaving since I was back, and they weren't better, they were still causing problems, and I thought, well, we probably just need to go back and see that specialist again, that I saw all those years ago. I probably just need to have another operation. I’ll have that operation and I’ll be fine, it will be like last time, where I got wonderful periods, and you know, I can have a baby, and I’ll be fine.

So, we did that. We went and saw the GP, got another referral. We went and saw the gynaecologist I’d seen the first time. She, again, did some scans, again agreed that she felt yes, there was potentially something not right – and one thing I will add, is I had gone for a scan when I was in, when those periods were quite heavy, because I was thinking that maybe I needed to check, was it a fibroid again, and they said they could see something, but they weren’t sure what it was, so that kind of made me think there was still something there. Yeah, so she then, from that scan, said “Yep, we need to go in and do another clean out, really, see what we can do for you there.” She did that, and then, after that appointment, we had a very similar conversation to last time, but you know, it still wasn’t a great environment to get pregnant in, but she’d done what she could.

Trying to conceive and experiencing further menstrual problems

So, we went back off with the mindset of, ‘All right, well, we’re able to get pregnant now, so let’s give it another go.’ We tried for a little while, and didn't have any success, and again, I can’t recall how long it was. I know everything that I think it is, is probably not quite right, because I did not want to go to IVF, so I was just making – “Oh, Christmas is coming, we’ll wait to New Year, or –” you know, there’s always a reason – or, “Someone’s birthday is coming up, or someone’s having a big wedding,” or whatever it was, so I’ll wait until after that to – you know, I’ve got to drink, you know, that’s an important part of life [laughter].

So, we waited a little bit longer, and then agreed that we probably needed to get some more advice and help. I also reflected that my – I look back, and my period was not as good as it had been after the first operation. I got a little bit of relief, but within 12 months, it was quickly deteriorating, very quickly, back to the kinds of pain and flow and life impact that it had before. That was concerning me a little bit, and I suppose I was starting to think, ‘Oh, maybe what I was told when I was 25 might have actually been valid.’ And you know, you start thinking things like, ‘Oh, if I had kids back then, then maybe I would have had kids.’ Those sorts of thoughts really began around that time, and they kept revisiting me quite a lot, as the journey progressed from that point. Again, you know, it wasn’t the right time, and for lots of other reasons, it wouldn’t have been a healthy choice to make at that time.

Being referred to an IVF specialist (but not wanting to do IVF)

Anyway, so we went back to see her again, and she kind of had the conversation, at that point, that it would be time to get some support, and suggested we go and meet with an IVF specialist. We made that appointment, and went to that. Really, I mean, I can’t keep reiterating it, because I was so in denial about not being able to do it myself, and I was very – I had no desire to get involved in IVF. The whole concept just didn’t sit with me. I didn’t like the idea of putting hormones in my body, particularly when I already am a hormonal and emotional person, you know, up and down sometimes, anyway, and from my limited understanding, I’m like, ‘Isn’t fibroids a hormonal imbalance thing? Isn’t that why they exist? Why would I want to put more foreign hormones into my body?’ I was trying to, you know, get a comfort level with all of that, which I just couldn’t get. Then, the idea of giving myself injections, or doing that, just made me feel sick in the stomach. I just didn’t want to do it.

So, with that in mind, we met – you know, my reluctance with me, we met with this specialist, and it wasn’t a great appointment. Really, for us, I think the challenge was, I’d hit a point of my understanding of my condition, where I knew it was not common, and I knew that most people that had IVF went to see IVF specialists for different reasons, and already, I had a circle of people in my life, sharing with me their advice about how to get pregnant, and what I should be doing, and if I just did all these things, then I would be pregnant. Trying to be helpful, but it was frustrating, because I kept having that grating feeling of, ‘But my condition is so unique, and I don’t understand why what works for all these other people is going to work for me.’

So, I really was hoping, by going to an IVF specialist, that they could help unpack that a little bit for me, and we’d talk about how IVF would work for my condition. But that appointment didn’t go that way, and the appointment was – I’d say, probably, it felt like a very out-of-the-box solution that was presented to us. I felt, you know, when I was sort of trying to ask questions about my condition, and how this solution could help me, I didn't really get anything out of that conversation that made me feel confident. And our rapport, I guess, wasn’t right. I didn’t feel connected very much with the person, or that she necessarily understood how I was feeling.

So, all of that left both my husband and I feeling a little bit uncomfortable, and we left that appointment – plus, she’d also asked for some more scans to be done, which were the same scans I’d already just had done, and I was confused as to why I had to go and have more scans, when I’d just had some, which she had. That wasn’t explained very well, and I suppose that probably left me also feeling a bit – ‘Do you even listen to me? You know, I need you to listen.’ So, when we left that appointment, my husband and I chatted, and both agreed, “This isn’t the right fit for us,” and we weren’t sure what to do, because I – we both knew that we probably needed some help, but we had to get help from the right place. So, I went and did the scans. I thought, you know, ‘I’ll do those, regardless of whatever we decide next, I’ll get that done.’

Finding a new specialist

While I was having that done, just an ultrasound, I hit a point, I suppose, where I was kind of getting a little bit desperate, and didn’t know where to start looking, so I’d kind of talk to anyone that might have a recommendation for me around who to see. So, I asked the ultrasound radiographer, or whatever their title is – when she was having a look, I asked her what she could see on the scan, and she was describing to me, “Yeah, that there’s quite a few in here, quite a few fibroids.” So, I said to her, “Do you – in your experience, have you seen people get pregnant with stuff like this?” She said, “It can happen, but usually is a struggle.” I said, “I’m trying to find someone who can help me, who is experienced with this condition.” I said, “I just don’t know where to look.”

So, by chance, she actually worked for a couple of other specialists, who are top-rated, and gave me their names. So, I did some research on their names, and then kind of made a decision from there, and quickly signed up and made an appointment, which was a four-month waiting list. So, that always gives me a bit of heart, because if someone’s good, you have to wait. I was quite happy to wait, and it also got me through Christmas guilt free, because I knew, [laughter] ‘Well, I can’t do anything, so I guess we just party on for a few more months, pretend this isn’t happening.’

So, then that kind of brought us to the first appointment with my specialist, who I ended up sticking with, and going right to the end of my journey with. From the first encounter, I was really impressed with the professionalism, and I felt really supported, the rapport was there, the kind of knowledge, the way things were explained, it was what I needed, particularly because of my already strong reluctance to pursue any of the actual treatments.

Discussing options

So, our first appointment, when we sat down, he had already received my history of what’s been done so far. He talked us through what my condition was, in more detail, and what it can actually mean, in terms of your fertility. He also talked about sort of the pathways to having a child. I’m trying to remember whether it was this appointment – I don’t think it was, but in this appointment, he certainly talked about IVF being one of those pathways. Then, because of my reluctance around the IVF, I was like, “Okay, you know, can you explain this?” With the condition, to get pregnant, you need to have a really healthy lining in your uterus, for embryos to attach to. My challenge – and if you have anything in your lining that’s not supposed to be there, then it’s not a friendly environment, and the embryo is very unlikely to attach, and probably won’t attach, and if it does attach, it may not stay attached.

So, I said to him, “Well, what’s the solution? How does it work, then, given my lining issues?” He also talked about surgery, and the surgery I’d had to date was more about taking off the top. So, you know, you’ve got a fibroid that’s embedded in your uterus, so by taking off the top, you know, that’s not necessarily giving you the clean lining that I need for a healthy environment. So, I was trying to understand how all of that actually works. So, then, he was talking about different surgical procedures that you can do, and using different techniques. That kind of encouraged me, you know, that he had knowledge, that he will help us find a way, and he’s got the techniques to get us to where we want to be, which is to have a family. That was a good meeting. He did say, though, because he’d seen the scans, and he didn’t need any more scans done, because I’d had those scans done, he did say the first step was to get my body into optimal shape, because there’s no point trying to even – through IVF or naturally – put an embryo into that environment, if it’s not likely to succeed.

Further surgeries to remove fibroids

It started with a surgery again, with him, which was kind of another turning point in our conversation, because at that point, what used to happen with the scans that I’ve done, is they’d only show so much. There would be sort of shadows and things, but you never really got a clear picture of what the uterus looked like. So, once he’d actually gone in and had his first go at removing the fibroids, we had, then, another conversation, obviously post that surgery, and it was the conversation, I think about that time, where he did bring in the prospect of surrogacy. So, he’d had a look himself, he’d seen what it actually looked like. He described the lining full of some that were of a certain size that he could get in and remove, and he had removed as much as he could, and I can’t remember the number of how many there were, but I remember there being a lot. He said, there were some that were so small, he said, effectively, you’d end up kind of getting rid of all of the lining, if you were trying to get rid of every single one of them. So, he said, you know, that wasn’t realistic.

He did talk about the fact that it was going to take a couple of surgeries to get the lining as clean as it needs to be, before we can proceed with anything else, but he also then started to break down what sort of success rates looked like, based on our condition. You know, success rates, for example, for us trying on our own, versus us trying with some assistance through IVF, and either way, the odds weren’t brilliant. So, I suppose the thing that was very discouraging and upsetting for me was that, you know, you go through all of these procedures and medical – you know, IVF, and operations and whatever you do, and you go through the pain and stuff that comes with those, but then, to be told the odds are still not necessarily that great, wasn’t encouraging, and didn't make me want to proceed with that.

Also, I was still in denial. I still thought, ‘Just clean me up, I’ll do it, we’ll get pregnant, it will be fine.’ We did three rounds of surgeries, and it took a few months, because I’d have to wait about eight weeks between each surgery, to heal. Then, once we completed those surgeries, again, we were kind of coming into Christmas, and you know, the fun time of year. I’m not an alcoholic, I promise you, but for mental health reasons, it’s important to have good times with the bad. I had a chat to him, and I said, “I don’t want to go through IVF just now. I truly have never, ever had an opportunity, I don’t believe, to give it a crack naturally. You know, we’ve done surgery to a level, for the first time, that will hopefully create the best possible environment, and I’d really like to give it a go – I’d like us to see if we can do this, without any help.” He supported that. He was really good at kind of connecting in, I suppose, with the psychological aspects of this whole experience. He said, “That’s completely understandable. I don’t think you should go too long trying on your own, because we’ve just done all this work to get it really clean, but yeah, you should. It’s part of the journey, you should see if you can do it yourself.”

The one other thing I did forget to mention, sorry, before that surgery experience, is there’s one other thing I had to get done, which was an iron infusion. I was quite anaemic, as a result of having such heavy periods, and periods that went for sort of seven to ten days, and not really giving me enough time to get my count back up. So, again, part of fertility being your best health, was making sure my iron levels were back to where they should be. It was a challenge, because you bring your iron levels to where they should be, but then, every month, it just kind of gets depleted again. They did an iron infusion, and I saw a specialist separately around that, to get those iron levels as good as they could be, too, before I was getting any chance of getting pregnant.

Last attempt at trying to conceive ‘naturally’

So, we went off and we tried on our own, and I was told six months, I couldn’t go longer than six months. So, I entered that six-month period saying, “Yep, it’ll happen. I know my cycle, I’m educated about my cycle, I know what to look for, I’m fairly regular –” and I’ve always been very in touch with my body, so I usually can pinpoint, based on what’s happening, where I am. So, that was all fine, but no, didn’t get pregnant. By that point in my life, so many other babies had been born, so it was just getting really frustrating. So yeah, we had to go back and start the conversations about IVF. We did do that, and I really – I really dragged my heels on that one. There were some very down days. I was very upset, having to even contemplate it.

Starting IVF

The IVF was explained very well, I was on board with it, even though I didn’t want to do it, had great support around it, and obviously the process of getting signed up for that, doing all your police checks and your working with children checks, and having your counselling session, and all those things which just infuriate you, when you’re already struggling to have a kid, and you feel like, you know, you would raise a wonderful child if you were given the chance, and yet, just to go and have a chance, you have to go and jump through hurdles that no one else does. I’m sure that’s not unique to me, but it is just another thing. So yeah, wasn’t happy about that, but it was also good to have something to whinge about as part of my journey, so hey, did that.

Then, yeah, then we started doing the IVF, and yeah, it was pretty horrible. Giving myself the injections wasn’t as bad as actually the idea of giving myself the injection, but within a couple of days of doing that, I was starting to feel quite bloated, I was getting very emotional, more than I normally am, so you know, I think my trainer, on day two of the medication, said to me, “How are you this morning?” and then I just started crying. I wasn’t actually upset that day. I was feeling pretty happy in the morning, and someone asked me in a happy way, “How are you?” and I started crying. I thought, ‘Oh my god, what is this?’

Physical and emotional impacts

I spoke to the – the nurses were checking in regularly, and I told them about that, and I told them about how I was feeling really bloated and horrible, and I started weighing myself, and I’d gained a little bit. So, then they started monitoring me for hyperstimulation, I think it’s called. I was getting a pretty good response from the follicles, very early on, so that did get diagnosed. Yeah, and so, my emotions got worse. I continued, we didn’t stop the medication, because it wasn’t critical, but it was bad enough that my emotional state was just a roller-coaster, and I ended up taking a bit of time off work just to not add fuel to the fire. I remember, you know, trying to focus on an iPad game or something, or a Candy Crush game or something, and I couldn’t win it. Just little things like that were just setting me off, and I thought, ‘This is just ridiculous.’

Anyway, we got through all of that and had the procedure. I had a really good result, a good number of eggs collected – not too much but not too little. There was no issue on my husband’s side with his quality of sperm. So, that, I think, turned into four embryos, maybe, or five – maybe it was six embryos, it might have been six, and they were very happy with the quality of those. They were only day two embryos, you know, in order to give me as many chances as possible.

One of the things that our specialist had said to us before we did that cycle, because I was getting really distraught – not just from, I guess, all the procedures and everything that I was going through, and these constant conversations – I mean, it completely consumed my life. I couldn’t think hardly about anything else, there was just so much going on around fertility. Then, he said to me that, you know, we needed – IVF would help us in a number of ways. It would either get us pregnant, which is what we hoped for, or just by using the – just taking the drugs, the treatment, there’s a risk that it could actually exacerbate my current condition, and then, you know, the uterus may not be any good anyway. He sort of said, “Either way, we get to an end point.” He said, where I was mentally, that’s where we need to get, we need to get to an end point, because this is taking its toll. I was done.

Deciding to stop IVF after one round

After that feeling through that whole hyperstimulation, and then putting one back in, and that was unsuccessful, and putting another one back, and unsuccessful, I was just getting – I was just done. It was only one round of IVF, which was really, really difficult, because other people that I knew that had experienced IVF would kind of try and be encouraging, and say things like, “It’s only your first round, you’ve got to do a few rounds to get the medication right, and you know, it took me 10 rounds, or it took me five rounds, or – you know, I also did acupuncture, or –” you know, everyone had their solutions, which great, that’s wonderful, but it was very hard for me, because I felt like, ‘That’s your solution, and your condition, but my condition is very different.’ I felt like I had to constantly justify that to people, you know? “That’s great for you, and I’m not discounting how great that is for you, but that’s not my experience, and it’s not what I’m being told. More to the point, I’ve reached a point where I’m like, sorry people, it’s not what my body is telling me.”

You know, my own husband – we got to the end of that round of IVF, and he was sort of like, “Right, we’re going to have to go and do more,” and he was getting obviously that same information. His friend’s wife took three rounds, and whatever. He said, “We’re going to have to go and do more,” and I’m sitting there saying, “I don’t want to, and if you saw what I saw, in my health every month, I just don’t think my body can do this.” I really started to melt down on the whole concept, because I’m like, “It’s not working.”

Starting to talk about surrogacy

Through, I suppose, discussions that I’d been having at appointments, with our specialist, to this sort of point, he did drop in surrogacy a number of times, and he knew my results, my feelings about that, every time he dropped it in, because I was very – if I was, like, “We’re not doing IVF,” you can only imagine where I was on the, “I’m not doing surrogacy.” So, there was one conversation that we did have, sort of about this time, during these transfers that were unsuccessful with embryos – and the embryos, I might say, they were good quality, so he wasn’t concerned about a quality issue around either side, or the embryo. He actually said that if I had a healthy uterus, he would have expected a good couple of pregnancies out of what we produced. So, yeah, it was telling a story, but he did say to me once, in one of those conversations around, you know, how I was tracking, and how we were feeling about it all, he said, “I know you don’t - I know how you feel about surrogacy,” he said, “and obviously there’s a lot of emotional stuff that goes with that,” he said, “but if we can park the emotion just for a minute, and just think about the brief –” and he said, “when you came into this office, the brief to me was, ‘I want to have a child that’s biologically mine’.” He said, “based on your situation, and what’s happening, and what we’re finding out, my recommendation to best answer that brief is surrogacy.”

That was kind of an eye-opening moment, where I was starting to realise that there’s a really good chance that I can’t get pregnant, whereas other people in my outside circle, my support group – not all – you know, and everyone does it with love, so don’t get me wrong, I totally get where people are coming from, and it’s great that people want to help, but it wasn’t helpful, because I spent more energy explaining why that isn’t something I’m going to be pursuing, as opposed to just kind of getting on with my own kind of private journey with my husband.

Anyway, so we got to the end of those transfers - I think we only ended up transferring four back, I think a couple didn’t survive through that – no, that’s what he did, he took – when we were getting really tired, and we were having no success, he took the last three through to day five, to get them as good as they could be, and we lost a couple, but we had one left, and then we put that one back in, and that didn’t work. So, that point, obviously, as I said, was do we do more, or not?

Before we’d even gone back to see the specialist – because I kind of wanted to have an agreement with my husband about how we want to proceed, before we went back in to see him, so that I wasn’t sitting there, in front of the specialist, debating with my husband about I don’t want to do it, he wants to do it, I don’t want to do it, he wants to do it, you know, and kind of ending up probably doing it, when I didn’t want to do it. So, yeah, so my husband and I didn’t necessarily see that the same way, initially, but we both agreed we would go and speak to the specialist, and then get his advice, based on what had happened.

So, when we did and he said to me, “I think let’s go and do some scans first,” because my periods had become the worst ever. I was spending – I mean, I couldn’t go to work, a week out of every month. I had to work from home all the time, I was sick regularly, because it was just too much. The pain was incredible. The flow had gotten so bad that I would have to wear layers of clothes to try and contain it, just to commute from home to work, and then, I would be walking, and I would have to stop, because it would just flood – or I’d have to find somewhere to sit down until the flood moment had stopped. By the time I got to the office, I’d have to pull everything off, and get a new clean pair of whatever out, and redress a bit. I had my period outfits, that you know, if it leaked, people couldn’t see, and then – it was out of control, and I felt exhausted, and just – I felt just completely defeated. I hit a point where I’m like, health-wise, I don’t care what’s going on right now, but I cannot continue. I feel really bad. He said, “Let’s go and do some more scans, before we make any decisions about more IVF.”

I went and had a saline ultrasound, just to check out the lining, and you do it on a certain day in your cycle, to obviously get the best picture. The radiographer put the ultrasound on the outside of the uterus, and she said, “Is your bladder full?” I said, “No.” She said, “Oh, okay.” Then, she’s like moving it about. I, again, was at another one of those points where I was, like, desperate. I needed ammo, so that I could go back to everybody and say, “I’m done, people. I can’t do this, my body can’t do this, and I don’t want you to continue to tell me I can, because I just want out, I’m just done.” I’d even been spending time, over the years, I guess, telling myself – like, I’m not clucky, I’m still not clucky – like, I love my own child, but I don’t really care too much for other people’s - they’re nice, but I’m not like a ‘Give me the babies, and I’ll cuddle and kiss them,’ kind of person. So, I was very much in the, ‘Maybe I don’t even want kids, like maybe I would be happy without all this, and I don’t need to have children to be happy,’ and you know, all of that.

So, I was in this kind of – what do you call it, sort of negotiate with yourself, those five stages of grief or whatever they call it, to try and get myself to a different place. And yeah, so I asked her, when she was doing the scan, after she said that to me, I said, “Oh, well, what do you think?” I was telling her a little bit about the journey, and like, I said, “I’m just really done.” I was getting really upset, because I was so emotionally driven at that point. She said, “Look, I don’t think I even need to do the internal saline scan.” She said, “I can – it's not looking good,” she said, “but I have been asked to do it, so I will do it.” So, she did, and she said – basically described my uterus as cluttered. She said, it’s just – she said, “I can’t even get a clear kind of lining, there’s just so much – you know, it felt tight. It felt so tight down there, all the time. I was in so much discomfort, even if I wasn’t having my period. So, I realised on that scan, that I think it was done, because of what she’d said, but also because of how I felt.

So, I went home, and I told that to my husband, and I said, I think, you know – “This is what she said, and I think this is not going to work.” Of course, because he’s very different to me, he was quite pragmatic, and – “Let's see what the doctor says, let’s not get ahead of ourselves.” But I think he was concerned, by that point. And obviously, he’s also been with me through all my periods. You know, we’ve been together since we were 18, going on 19, so he’d seen that progression in my health, and that change. It certainly had reached a point where he was concerned about how much it was impacting me, and what – I used to wake up at 3am, and kind of had to go on all fours. It felt like labour. It was just – not that I’d had labour, but it felt – when people describe labour to me, that’s how I felt, I was in labour. Like, it was – yeah, so he’d been through all of that.

Deciding to have a hysterectomy

Yeah, so then, we had the appointment the following week, and he was very honest, and he said, yes, he said, “I did say that one of the possibilities of IVF treatment was that your body would react, and you know, here we are.” He said, “I do not think there’s any point continuing doing any more IVF.” He said, “I think it’s time to take it out,” for my health. He was very, very good about, you know, supporting us through that conversation. It wasn’t a surprising conversation, and I was, you know, very much the – “When can we do this? Like, basically, can we do it before my next period, because I don’t want any more pain.” Yeah, so he was very good about all of that, and explaining all of that really, really clearly, and you know, I actually felt relief. Like, it was upsetting, but not a shock upsetting. It was, ‘Thank God, you know, this is going to end. I can finally get out of this hellhole.’

Receiving an altruistic surrogacy offer from best friend

I think I might have brought up the surrogacy thing, because I said, “I can’t do that.” Because one of the things that we were at, in terms of our fertility journey, was it’s maybe not going to work, you know? I think the light was dawning on my husband too, towards the end of those transfers, and seeing my periods change. So, we were starting to talk more about surrogacy. Also, at that point, kind of in those few months leading up to that it’s time for the hysterectomy diagnosis, my best friend, who I have – she's like a sister. We lived a street from each other from the age of 13, so super, super close, and she’d been with me through all of this. She had started talking very seriously to us about offering herself up for surrogacy, and of course, delicately. I’d say, “Thank you, but no, thank you, but no, thank you, but no.” But we both were aware that finding a surrogate wasn’t actually a barrier to us doing that. That was there, but it was more comfort levels with the whole idea, and that was like – as I said, if IVF was, “I don’t want to touch that,” surrogacy was just – [laughter] yeah, “Forget that, just forget it, basically. No way, I would be too jealous, no, not doing it.”

So, yeah, I think I might have brought that up with the doctor, the specialist, and I was like, “I don’t want to do surrogacy.” He’s like, “We’re not talking about that. We’re parking that, that’s going over there, let’s just get you better. Let’s focus on getting you better, and doing what we need to do there. We don’t need to talk about that, we’ll leave that one alone for a little while.” He was really very, very good at kind of getting me through each of those little emotional steps.

So yeah, so I had a hysterectomy three weeks later, and I thought, you know – at the time, he’d said to me that – because there’s a lot of technology these days, where you don’t have to cut someone the same way as you once used to, so he said that he didn’t think that he could do it without cutting me at all, but he said, he thought we could probably do it possibly through the keyhole, and there might be a small chance that he can’t do it through keyhole, and he would have to actually do a proper cut.

I didn’t kind of really mind either way, I just wanted it gone. I just did not care, I just wanted it out. I know this sort of feels really embarrassing to admit to, but I knew that post-surgery recovery, for bigger surgery, would be longer, and I really wanted to take time out. So, inside, I was thinking, ‘Yeah, let’s do the bigger one, because then I can just lie on the couch for six weeks, or however long, and just not have to do anything, which sounds pretty nice to me right now,’ you know, without having experienced a surgery like that, so yeah, it’s just the way your brain goes at the time, I suppose. Anyway, so, he was leaning towards keyhole, and it wasn’t going to be a big one, so all in all, it was going to be okay.

But on the morning of the actual procedure, before I got wheeled in, he said he’d have a closer look at the scans, and he said, it’s too risky. He said, “I think there’s just too much going on in there, and I have to actually blast parts of the uterus bit up to pull it out through keyhole, and if I did that, I’d run the risk of leaving stuff behind, and that’s really just too risky.” So, he said, “I’m really sorry, but we’re going to have to do the full whatever.” I said, “All right, whatever.” I was upset, but you know, I was trying to put on a brave face. He said, “How are you?” I said, “I’m fine.” He says, “No you’re not,” and then I just melted down. So, I kind of – you know, it was the day - whatever the day was.

Recovering from hysterectomy operation

Yeah, so post-surgery, I was thinking I was going to wake up really drugged up, you know, no pain, and eventually just kind of the pain would sink in, and you’d just kind of get to the other side. I woke up in so much pain, and I don’t know why. I don’t know whether they didn’t give me enough painkillers, or whether they make sure you feel pain, so you actually wake up. I don’t know what it was, but yeah, I remember thinking, ‘Oh my God, what have you done?’ They very quickly rectified the pain situation. Then, I think, yeah, I just felt a bit hazy that day. I kind of remember it crystal clear, like I remember, you know, my husband coming over, and I remember seeing the doctor, and then I remember being taken in the ambulance to the actual hospital I was going to recover in, and I remember my best friend coming in. I definitely remember my first nurse that introduced me into my room being very heavily pregnant, and thinking, ‘That’s a little odd, given why I’ve just had a hysterectomy, but okay.’ Then, I never saw that nurse again.

Then, from then, you know, just recovering in hospital, and yeah, it was actually kind of a weight off my shoulder experience, even though it was painful. Then, obviously coming home, and then recovering at home. I think, just on that nurse point, too, just as an example of the kind of friend that I had, my best friend is also a nurse, and the reason I never saw that pregnant nurse again, even though she was very lovely, was because my best friend, that day, immediately went and saw the Nurse Unit Manager and said, “Have you read this person’s file? Do you know what she’s here for? Why would you put someone who is heavily pregnant in her face? Do not do that.” So, I never saw that nurse again. Thank God for a best friend, hey?

Indecision about surrogacy and seeking psychological support

Yeah, so yeah, the immediate journey post that was just recovering from the surgery, and doing the physical recovery, and then, I guess, starting to come to grips a little bit with my reality. Between my husband and I, we hadn’t said surrogacy was off the table, but for me, I was very much. ‘It’s not happening.’ So, he wouldn’t accept that as being our decision, but he wasn’t pushing me either. It wasn’t like I was being pressured, but you know, he just takes a different approach to processing things, and sometimes, you’ve got to do things in the right order and way, and yeah, the focus, like the doctor said, was all about getting my health back on track. So, we kind of didn’t really talk about it in a lot of detail, but whenever we did – I used to bring it up, because I wanted closure, and he would – yeah, it would end up in an argument, and then we’d kind of park that one again. So, we’d kind of go round and round and round like that.

But over the course of that year, I went and saw a psychiatrist, to really work on accepting – what I wanted to do, is I wanted to accept my position, and where I was, and you know, even the fact that I had this horrible scar on my body, and you know, it didn’t heal the way I was expecting it to heal, and I was very disappointed about that, right through to I wanted to understand whether I could get to a place of being able to do this surrogacy thing. I thought, for me, ‘If I do some work about trying to get to that place, but I still don’t want to do it, then I’ve done everything – you know, I’ve given everything the best possible go, but if I don’t do that, then it’s probably not a good idea just to make a flippant, ‘I’m not going to do it’ thing.’

Taking a break from work and starting discussions about altruistic surrogacy

So, I’d stepped out of work, basically, from the time the hysterectomy started – sorry, by the time I’d started the IVF rounds. I stepped out of work on a career break, to give that the best possible shot. Then, once I progressed into the hysterectomy and recovery time, I just took a break. So, I was out of work for, I think, about 18 months or so, during that time. I was seeing a psychiatrist for, I think, about six months, yeah, and then sort of coming around to the idea of being able to do surrogacy.

I guess, what I decided with that, was that I’m never going to be 100 percent comfortable, there’s so many unknowns. It is very unusual, but you’ve got to take some risks, and go with what you know. For me, I did not doubt my best friend. I did not doubt our relationship. You know, we are so open and honest with each other. I knew that we would talk to each other, we would do what we’d need to do, to be comfortable through all of that. Plus, the process itself was very intense. It doesn’t kind of leave gaps, in terms of being prepared for what you have to do. There’s always the unknown that can happen, but you have to go through a very extensive process to even be allowed to do surrogacy, here in. It may have gotten better since I did it, but yeah, it’s a long process. So, I thought, ‘No, I’ve got to trust that.’

Deciding to pursue surrogacy with best friend while banking some embryos

So, my best friend and I talked at length, a lot, about how, we’d scenario manage all the different possibilities, way before we as two couples came together and went and saw my specialist again, and said, “Yes, this is something that we want to do.” close to 12 months after my hysterectomy. But one of the things I did do before we did that is, I did go and do another round of IVF, reluctantly, but I did it, to produce and bank some embryos, because best to have those embryos at the youngest possible condition, then figure out later what to do, rather than while I’m umming and ahhing for a couple of years maybe, my body’s aging at the same time.

And that experience was a lot different, the second time around. Because I didn’t have the uterus, I didn’t have all of the complications that went with it, so I had a really clean experience. Even the procedure – I had lots of pain after the first procedure, but this time I didn’t, and that’s because he could get to the follicles really easily, whereas before he couldn’t. So, it was a really, really different experience, which kind of made me understand why people don’t have those experiences that I had had. It shouldn’t be as bad as that.

Beginning surrogacy – counselling and administrative processes

Yeah, so we’d done all that, and then we went through the process of getting ourselves ready to go and be approved, fingers crossed, to the surrogacy experience. That was multiple counselling sessions, psychological assessment, psychological report for all of us, you know, two sets of couples, and individuals. We had to meet with lawyers, understand what an arrangement actually means, even though there’s no formal contract, you have to go and have a legal discussion. There were some usual police checks, working with children checks, and some bloods and medical checks, to make sure we’re all healthy beings, and not going to infect each other, and all that kind of stuff. So, that whole process took about eight months, and we did that as quickly as we could do it. So, long process.

Then, we sort of fronted up to a panel of all these people that we didn’t know, who then were making the decision about our fertility future. There was some person who asked – I can’t even remember the question now, but it was some random question, probably feeling that she just needed to ask a question, because she was told to ask a question. I don’t know. But we all kind of left that thinking, it’s really good that we are the kind of people, particularly my best friend and I, who are more extroverts, and you know, just by nature, more comfortable and able to deal with these sorts of situations, that we can get through that and actually not feel – yes, you feel intimidated, but not take it all too hard. I think some personalities would struggle. I just think, you know, it’s just a really unnatural kind of thing to have to go through.

Transferring embryos

So, then we started working on tracking my best friend’s cycle, once we had been approved, and I had had a really good result again, with my husband, for our embryo quality, so that was really great news. We’d taken them all to, I think, day five, so we had the best possible chance. The first one went in, it didn’t work. It felt like I was going back to that time again, where you’re waiting for, you know, getting your results, and all of that, but anyway, that didn’t work. It was odd, because my best friend had to share details of her cycle, and how she was feeling, and we just kept joking about how ridiculous this was. But yeah, so that didn’t work. The second one, we had to cancel the cycle, just because there were other factors that meant that it wasn’t going to be a viable cycle.

A successful pregnancy – and mixed feelings

Then, on the third one, when we put that one back in, which was really the second embryo, it did work. So, we got pregnant. I remember getting the phone call, because I got the call before – we elected that I would get called first, then my best friend would get the call from the nurse. I was sort of like, ‘What?’ I felt very shocked. Then, I felt extremely scared, because it suddenly meant we were doing the surrogacy thing, and this whole emotional journey about, ‘Don’t be jealous, you know, don’t be jealous. Don’t be jealous, don’t worry, it’ll be fine. You know, [it] will be fine.’ All these little paranoias started to creep in very, very early. So, I actually wasn’t joyous, I was just – almost terrified about what was going to happen. Within, I suppose – and my best friend was amazing with handling it, because she understands me, you know, knows me very well. She was amazing, just sort of supporting me, and not expecting me to be jumping off the ceiling. She was just really supportive. And the nurses that were available to me through our specialist were amazing, as well. Like, our whole support group was really good.

A couple of months in, when we were starting to get to that point – so, probably about week 10, where we were going to start telling our immediate family, and a few close friends – yeah, again, I wasn’t feeling any better. I was still just – I hated it wasn’t me. Everyone was being happy, you know? I knew people were going to be happy about the news, but I didn’t want to hear people being happy. I was just feeling really – yeah, really terrified, and quite miserable, and I was feeling jealous, and I was feeling frustrated. It wasn’t a happy time. So, of course, we did then tell our immediate family, and you know, different members had, I suppose, a different sensitivity –some were super happy, and tried to show their happiness and support for us – for us, as well, not just for the fact they were going to get a grandchild, but for us, and it wasn’t helping me. It kind of blew up my head, and I ended up kind of melting down about the three month point. I had an amazing manager at work, and I remember calling her, and I just said, “I’m not coping.” I told her what was happening. I think I told her very early on when we were pregnant, because I wanted people to understand what was happening in my life. So, “I’m not coping, I’m actually completely freaking out, and I’m not in a good state, and I need some space.” She was amazing. She supported me with taking as much time off work as I needed.

Seeking psychological support

I reconnected back in with the psychologist who had helped us through the assessment, because I felt a really good rapport with her when I met her as part of the assessment. I just started seeing her regularly. I started talking to my best friend, obviously about everything. I didn’t really come out the other side of that phase until we were probably only a couple of months from having our child, which we didn’t know what we were having. We did the whole, you know, secrecy on the sex and everything.

But it was only when we were getting close to the end – and it might have possibly been the fact that we were finally getting close to an end, where the natural order of things was going to start to resume as it should, we just had to get through the having the baby thing, and then we could start to get on with the way it should be.

Preparing for the birth

I also started taking – I'd seen a different specialist about inducing lactation, so I had started taking medication in the leadup to my daughter’s birth. In the last sort of five weeks, leading up to that, I was doing expressing. You know, I had the pump, had the syringes, the bags, just getting all the milk and everything ready. It was such a crazy time, but I think by doing that – and I’d left work, I’d started on maternity leave early, and I was given maternity leave, so some of the normal things were kind of coming in – I'd left work, and that was my life.

I was attending scans and appointments, and we were getting lots of extra attention, because of the special nature of the pregnancy, not that there was anything even wrong with the pregnancy, but they were doing everything to keep everything monitored, and you know, everything was going along perfectly fine. So yeah, I went to appointments, and spent time actually feeling the baby moving, which I thought was going to be horrendous. I thought that would just make me feel more jealous, and more upset, but I think as we got to the end, I was enjoying some of that more, and yeah, I was producing my milk and getting ready.

The birth

So, the whole birth was a scheduled birth. My friend had already had caesareans in two earlier pregnancies, and so, they were doing it through the same way. They also didn’t want her to go into labour. We knew that from the onset, when she’d had the consultation prior to us commencing surrogacy. I think one of the big things that enabled me to get across the line was knowing that there was not going to be a labour, and that we’d have some certainty about when, but also that there wasn’t going to be a labour, and that she wasn’t doing anything that she hadn’t done before, because she had done caesars, and all of this sort of stuff, before. So, I don’t think I could have coped as well if we were going to have the labour experience.

Yeah, it was great. It was scheduled, and we kind of all arrived at the hospital really early in the morning. They had the best – all the staff had been briefed, they’d brought in the best people. The staff were amazing, the hospital was amazing. The way they’d bent over for us – it was a particularly busy time when our daughter was born. The hospital ended up overflowing so badly that they had to use other wards, and not once did – because we were taking up - between my husband and I being allowed to stay in the hospital to be with our daughter, and my best friend needing to be in there to recover, not once did they make us feel like we were crowding out space. They were just incredible. So yeah, so that all went really amazingly well.

We had some little surprises, where in the actual delivery, you know, my best friend went in, her husband went in with her, so that he could be there when she had the epidural, and then he came out, and then we went in. Then, the child was born, and when we were then whisked away with our daughter, to be weighed and all those sorts of things, they allowed my best friend’s husband to come back into the theatre, to be with her while they finished up with her, which I was just so happy about. That was completely against the rules, but they were just so willing to do everything to make the experience great.

The postnatal hospital stay

Yeah, so then we completed our hospital stay – it was crazy, like they all are. We did have one little moment where our daughter had to be admitted into their intensive care room for 24 hours, which was extremely distressing, because she’d had some fit type behaviour when I was holding her, and it was on the kind of eve of us supposed to be going home the next day, and she had these kind of fits. So, she got whisked off very quickly, and admitted, and they were running blood tests and doing scans, and doing all this kind of stuff. I nearly died. I was so incredibly stressed. All came out fine, but it was a really horrible 24 hours. I thought after everything, for this to be happening, just – I can’t cope. But the hospital were beautiful. They really – they didn’t even charge us for the extra day of the room. They didn’t kick us out, even though they had all these other people needing rooms. They were just incredible.

Reaching the end of the journey

So yeah, then we took her home. I guess that kind of gets us to the end of the whole journey. The only thing I would add is that we did have a few embryos left, which my best friend – because it was such a positive experience for her, positive experience for us, it has brought our two families, that were already close, like incredibly close, and they really are extended immediate relatives to us, and so are her parents, as well. They’re extended immediate relatives.

So, they said that, given I’ve got a few embryos left, “Do you want to give it a go, get your second child?” You know, it took a little less convincing this time than it did the first time, and it was a far more streamlined process to go and get formal approval from the body to be able to do that, but that didn’t work. I mean, it kind of closed out the journey, which was good. We didn’t have embryos sitting on ice, not knowing what to do with them, but yeah, it kind of put an end to the whole – you're getting one kid, and that is it. So, only child, but yeah, it could have been none. So, that’s kind of it!