Lots of women have approached me regarding their infertility struggles, which I appreciate. I am grateful they feel they can trust me enough to share their stories and heartache. I think a lot of this stems from the fact both Alee and I have always been so open about our journey. For some reason, society has placed this stigma upon us that infertility, miscarriage and infant loss are the kinds of things that we need to keep to ourselves and just quietly cope with somehow. I call bullshit on that! I thought maybe it is about time that I lay it all out so that the facts are here and whoever is interested can read it and go do their own research armed with a little bit more knowledge (please note I am clearly not a doctor and what I say is true for me, and me only. If you are struggling then you should see a GP and get a referral to a specialist. This isn’t a medical journal, this is my story only). This is going to be a long post, so put the kids to bed, chuck on the laundry and grab a cuppa mumma!
It all began several days before my 21st birthday. I had been dealing with painful periods since I was 12, to the point I would need time off work every month to sit at home and cry. My periods were heavy and clotty. Sex hurt too. I saw a gynaecologist and had just had my first (of many) laparoscopy to suss out what was going on. I got the crushing results just in time for my birthday. The doctor had removed a bunch of endometriosis and then done a dye test to see how my fallopian tubes were going. They were blocked, and one was clubbed. I was told that 100% without a doubt I would require IVF if I was to ever fall pregnant as the sperm would never pass through my tubes. I had a previous history of pelvic inflammatory disease (PID) too, which was a likley contributing factor to the blockages. Needless to say I had a rough birthday that year. I learned too that endometriosis grows back, so I had three months after surgery of painless periods then everything went back to the way it was pre-surgery.
Fast forward a few years and I met Alee. I was having a particularly rough time with my periods again and had an appointment with a new gyno. She came along with me to the appointment, where a few tests were ordered, including an AMH blood test which studies your egg reserve and quality. This had never even been something I had thought about as I was never told it would be an issue. He also did an internal ultrasound and saw what he assumed was endometriosis deposits, which he pretty much confirmed when he asked me a few questions relating to period and sex pain. When we went back for the results I was expecting him to say I will need another op to cut it out and then I am sweet. He then told me that my AMH was extremely low for my age, being around six and it should be in the high 20s. Given this, I had maybe 12 months of eggs left before I would no longer be able to conceive a child. I was only 27. Alee and I had been together maybe two months at this point. My head was swimming, what the hell would I do? One, it is mental to even consider having a child with someone I just met and two, how the hell was I going to find $10,000+ that fast to try IVF? Alee and I went home to discuss it. I gave her an option, leave now and I completely understand or jump aboard and let’s give this our all, because either way I was going to begin IVF as I wanted so badly to be a mother (I just hadn’t planned on it being this soon).
As crazy as it was, Alee chose to stay. And I am thankful every fucking day she did because looking back I don’t know how I would have possibly coped with what we were about to go through on my own. I had no idea IVF was that brutal, I had no idea the odds were so shit, and I had no idea it would not just magically work first go.
We scrimped, saved, borrowed and sold our crap to find money for that first cycle. We lived on a diet of toasted cheese sandwiches to save money in the lead up. I used Dr Cary at QFG on the Gold Coast. He recommended a long down regulation cycle. Injecting myself that very first time was terrifying, I was shaking and shit scared. Once I did that first needle though I was sweet. Looking back now I can’t remember what medications I used, I know Gonal-F was in there at some point. I injected myself daily for a month to hopefully have as many eggies as possible mature, then I did my trigger shot of HCG to ovulate exactly when the doctors needed me to. I went in for my egg pickup (EPU) at Pindara hospital. I think Alee was grateful it was at an end because according to her IVF meds make me an absolute nightmare, I don’t see it that way.. By this point I had suffered side effects including constant diarrhoea, bad skin, tender boobs, I was bloated and sore as all hell in my abdomen and I constantly felt dizzy and tired. On my scan several days before, the doctor had seen at least 10 follicles, so we were expecting a few eggies. I got seven. This was great we thought. It was more than some women on my support groups had gotten. Our eggies were inseminated and left to do their thing in the lab for five days. Every day the lab called us with an update and every day our babies kept dying. By day five, I was quite bloated and sore but excited for our embryo transfer! Of our seven bubbas, we had two embryos that made it. One was transferred, we called her Celly, the other was frozen. I went home and used the disgusting progesterone pessaries as ordered.
Not long after transfer I got really sick, my stomach was so huge and bloated I looked nine months pregnant and I couldn’t breathe. We went to the hospital and I had developed Ovarian Hyper Stimulation Syndrome (OHSS). This is rare but can occur for a number of reasons.For me it was put down to small size and the fact that while at the hospital they ran a test and we were pregnant! Pregnancy hormones can push OHSS through the roof. Holy shit! We did it, and first go. I cried and I thanked the universe for being so kind. My support groups had taught me that most women take many cycles to fall pregnant and we were blessed enough to get a baby first go. The hospital did an ultrasound of my abdomen and it was full of fluid, I had fluid around my heart and you could literally hear my stomach swooshing when I moved. Aside from draining it and recommending a lot of protein, there wasn’t much they were willing to do. I opted to not have a drain so we went home, I rested up and lived on protein to try and get past it. Over the next two weeks it gradually went down by itself. We had our blood test at the clinic to check out my hormone levels. They were low but definitely pregnant. The nurse assured me all was ok as it was very early days. My next blood showed increased HCG levels but not the increase we would hope for, but again I was assured that all was ok. Next step was our seven week scan! As I lay there, Alee had her phone out recording the entire thing. I saw the monitor light up, there was my uterus and I saw a small, black spot inside. I knew without being told that it was our Celly. It was at that point the doctor went very quiet and serious and fiddled around some more. I saw his face, instantly I knew something was wrong. He then looked at me and said “I’m sorry, there is no heartbeat”. I didn’t quite know what to make of that; was that it? I miscarried naturally over the next few weeks. It was utterly devastating to us both. I was beyond grateful that I had Alee there with me to share and take on some of this heartbreak with me. We were told that our baby had stopped developing somewhere between 5-6 weeks old. It didn’t matter to us whether it was not even classed as a foetus or not, it was our baby and she was gone. Yes, we call her a she as that is how that pregnancy felt to me. I’ve since watched that video from Alee’s phone a million times.
Our next step was to do a frozen embryo transfer (FET). This involved having the doctor simply thaw our ‘frosty’ out and insert it directly into my uterus. This was a whole lot easier! The morning of our FET we sat in the dedicated transfer room at the clinic. It is a bizarre room directly off the waiting area. Everyone in that waiting room knows what this room is, and I don’t know if it is just me, but I always noticed that women always look a tad jealous watching anyone go into that room. They were finally over the hard bit, they now got the most rewarding part of the journey. Now it was my turn again. The embryologist came and sat with us to tell us how our little emby went during thawing. 40% of our only remaining baby had died during the thawing process. 50% or more and they wouldn’t even transfer, so 40% cell death was yet another crushing blow. After the FET Alee yet again drove out of the car park ever so slowly, and I rode home with the seat belt pulled off my body as though the pressure on my stomach would lessen my chances at a successful pregnancy. Every speed bump in that car park made me clench my vagina so tight in case our little one fell out. Yes, I am entirely aware that all of this is utterly ridiculous, but I think any woman who has been in that position was probably just as stupidly over-cautious. We barely spoke on the way home, in my head we had just wasted our embryo, our time and our money. This was not going to work, and it didn’t.
We once again saved our asses off to begin another fresh IVF cycle. We discovered that the clinic offered a system where we only had to pay the Medicare gap, they would wear the remainder of the money and once the Medicare rebate came back it went directly to them and reimbursed them. Mind you, this was still over $4000 that we had to find. Things like donor sperm and the day hospital fees for EPU are not covered by Medicare. We always chose American sperm too, which is more expensive. We were told this is better for IVF and we found that a lot of Australian donors actually specified that their sperm was not to go to same sex couples. Way to go Aussie men…We did the exact same cycle as before, this time despite having many follicles on my ultrasound, I only got three eggs. By day five I had two eggs left. I was not taking the same risk as last time, I demanded that both be transferred. Would you believe I once again got bloody OHSS? This absolutely sucked and I once again slept sitting upright in bed and could not breathe, but it also meant I was pregnant! I was terrified for the blood tests prior to my seven week scan and I was justified. My HCG levels were not great. They were climbing but not as much as they should. Our seven week scan showed only one embryo had taken, and once again no heartbeat. That scan was awful. We went in not excited, but absolutely shitting ourselves. We had a minute amount of hope as they levels had been rising and nurses assured us that sometimes it is normal for people to have these levels and things pick up later on. I was asked if I wanted to miscarry naturally again or have a dilation and curette (D&C). I wanted it out of me right away. I was not going to carry my dead baby around a minute longer. I couldn’t. I needed to move on and I couldn’t do that with it inside my body as a constant reminder of how my body could not do the one thing a woman’s body is meant to be able to do. I felt like a failure and I was ashamed. I felt guilty for putting Alee through this, she deserved better than to be with someone who could not give her a child. I was hurting her by allowing her to be with me. How selfish was I for wanting her to stick around? I get now a lot of my feelings were unjustified and inaccurate, but at the time those were the thoughts running through my head, and I know a lot of infertile women share those thoughts at one time or another. Well, we didn’t have private cover and several thousand dollars to spare to have the D&C the next day, so our only option was to head to GCU and present to emergency. This was something I would later regret immensely.
GCU could not take the word of my gynaecologist that I was miscarrying, so I had to present to the Early Pregnancy Assessment Clinic (EPAC) and be assessed. As abortion was illegal at the time they needed to ascertain that I was genuinely miscarrying and not trying to abort my baby (we were told by the nurse that they have had women try to do this previously). Wow, that was a low blow. They did a blood test and of course I was pregnant according to that as I had HCG in my body. I was told I would need to have an ultrasound, which was cruel as I did not need or want to see my baby yet again. I would then have to return a week later to see if my HCG was lower and if there were any changes on the scan.
We went off to have our scan and you would not believe what happened next, there on the screen we could all clearly see a tiny, little flicker. It was our baby’s heartbeat! The doctor measured the sac and little foetal pole and it was measuring small, 5ish weeks and I was 7. My HCG was low for that far along too. But, because there was a heartbeat, even though the baby was obviously not developing properly, they could not do the D&C, and we didn’t want them to. We were filled with sudden hope, our baby was alive and fighting. I took to mother’s groups as we drove straight back to our gynaecologist and I found other women who had previously had pregnancies that developed slowly in the beginning then caught up. We were determined to make this work, our baby was so strong! The gyno got us straight back in when we told him he had missed the heartbeat. He scanned me and yep, there it was! Mind you, he then charged me for the bloody scan, the same day he had already scanned me and not found a heartbeat. He told us that it was cruel, but there was no way this baby would survive. It was too far behind. We left pretty much ignoring him.
A week later we returned to GCU for follow up bloods and a scan. Once again, there was a slight rise in my HCG and a tiny heartbeat, though the baby was still behind. So once again we were excited and hopeful, despite the baby still being weeks behind where it should be. Another week went by and we went back again, and this week we did not get good news. My HCG was barely rising and they could not find a heartbeat. As if this was not crushing enough news, we were told that because of the whole abortion policy here, they once again had to wait another week until my HCG was clearly dropping and I had a very clear miscarriage, despite the fact they could see my baby was not alive. I can’t even begin to tell you how fucking cruel this experience was to us. The next week was a blur, I continued to go to work when I could manage as it gave me something to keep me busy. By the time I returned, had my bloods taken and yet another fucking scan so the doctors could be satisfied I definitely had miscarried, I was somewhere between 9-10 weeks pregnant. Having known since 7 weeks that I was losing my baby, then thinking maybe I wasn’t and carrying it around for several more weeks is without a doubt one of the most difficult and cruel experiences of my life. At one point even the EPAC nurse had told us what she was seeing was miraculous and unheard of. No one could explain why this had happened the way it did, but it did. Nothing in this world tests a relationship like losing a child. What we went through together showed us that we could survive anything as a couple.
I had the D&C and we began to piece our lives back together and try to move forward. Everything around me was a reminder that I had lost our babies. From the little outfits we had excitedly bought, to ‘Lamby’, the little comforter we had bought as our baby’s first toy. All the names we had thought up while lying awake and talking all night were useless. I just wanted it all out of my sight, so it was packed away where it wouldn’t make me cry whenever I walked past. I have to say too, what was weird about these pregnancies is that I never got morning sickness. I got OHSS sickness, but that was different.
Somewhere along the line, I think maybe after our FET but before our second fresh cycle I was told by QFG that there had been some batch errors with the AMH tests when I had mine done and they offered to re-test me free of charge. The results came back in the low 20s and I was then told oh oops, you probaby have more than 12 months to conceive. Yeah awesome, we rushed around and lived like plebs because we thought we didn’t have much time. This really pissed me off. To be told you’ve got a year to become a mum, then stress yourself crazy doing back to back IVF cycles and lose those babies, then suddenly be told you are actually fine really messes with you. I was literally at my wits end by this point.
My due dates came and went and I mourned our babies and tried to imagine what our lives would be like on those days and the weeks that followed if we had our baby in our home. I kind of lived in a bit of a dream world for quite some time after the miscarriages. I didn’t like crying in front of Alee, so I would get home from work and just bawl while I cooked dinner alone and get it all out before she arrived. Work was an hour drive from home so the lonely drive to and from work usually meant I had too much time to think and I would cry. I would cry when I saw babies or when I saw all the little outfits on sale at the shops. I think I thought I was coping but I look back now and I wasn’t. I really should have seen someone, but at the time I guess I thought it was just normal grieving.
At this point we decided to give it a break. I had received a huge tax return, it was enough for a cycle or to go to America. We opted for America. We went and priced tickets, had everything planned out and literally just had to pay when at the last second we decided to do IVF. We were pissy at QFG, in particular our gyno so we decided to change. We heard great things about Dr Swift at QFG. I went and had a consult, filled him in on my history and sat for yet another intrusive internal ultrasound. Not sure if you’ve had one of these, but basically the doctor sticks a giant probe up your vagina and it is incredibly uncomfortable. For me it is actually painful thanks to endometriosis. He said that with a history of miscarriages, it was possible I had hydrosalpinx, fluid inside my fallopian tubes, which causes pregnancy loss. I could risk another cycle, or have an operation at the cost of $10,000 to take a look. It was elective, the wait list was 12 months to get an appointment to see the specialist at the public hospital (oddly enough, that is him) and then at least another 12 months after that for the operation. I didn’t have ten grand for this, but did I really want to risk spending our money on IVF and throwing it away if I had this thing and would just lose the baby anyway? One of the tests that he ordered was an ANA test. It came back that I tested as having a high ANA, I was told I had lupus antiphospholipid syndrome. It could be possible that this caused my miscarriages and I would require blood thinners. I don’t even remember how we came to the decision to see another specialist, but we did. We heard absolutely amazing things about Dr Kee Ong at Monash so went to see him and ask a second opinion. He was the best! He was down to earth and straight up. He said the AMH test was utter bullshit, did a scan and a few other things and said he reckons we could do this, we just needed to tweak our cycle. He was also the first person to tell me that endometriosis can affect egg quality.
Monash at that time offered a concessional cycle so we went for it. He prescribed CoQ10, melatonin and testosterone for a month prior to my cycle to help my eggs. I was placed on daily aspirin for my lupus antiphospholipid syndrome. He recommended an antagonist cycle, which was so great because it was only a week or two of injections instead of a month and it was a lot less brutal on my body. We happily chose our donor. We knew we wanted an African American one, and there were none available so they flew his sperm out specially for us. EPU came and when I woke I was so scared to flip my hand over and see that magic number written underneath. I turned it over and it said 12! Holy crap!!!! It had worked, it was an utter miracle. My eggies were inseminated and left to work their magic. Every day the clinic rang and to our disappointment our embryos were dying off so fast. It was at the point where the day of transfer came and I expected to find out we had no babies. That morning the clinic rang and we had two. We were ecstatic! We headed to the clinic and spoke with Dr Ong. He advised that one embryo was absolutely perfect, the highest quality and the other was not very good at all, it wouldn’t even survive being frozen. I asked if he would transfer both and he said he could, however that would risk us losing the good one should my body try and flush out the other. QFG had never told us transferring two increased the risk of losing both if one was not great quality.
So there it was on the screen, we got a photograph of our emby and we watched as it was transferred. There was a little white flash on the screen and that was it, I had my baby back where it belonged. In that moment I said to Alee it was a boy, I could feel it. We couldn’t believe we got a photo and got to watch the transfer on the screen, we never got those things at QFG. It made it all so much more real. We once again did the careful drive home and I took care of myself over the next couple of weeks until I had my blood test. I began injecting myself daily with Clexane, another blood thinner in addition to taking aspirin. These ones really stung and my poor stomach became incredibly bruised from them. I felt different. I felt off. With my other pregnancies, while I never got sick I did get a sore throat and a blood nose early each time. I had those symptoms, but I also felt weird. Our bloods came back positive. And my HCG was exactly where it needed to be. It is sad to say that at this point we didn’t get excited. We were too scared and we had been here before. The seven week scan came around and I asked Alee to look for me. I couldn’t. I didn’t want to see the baby if it wasn’t alive. I watched her face as she was watching the screen and she smiled so huge. I spun around and there was no denying the little fluttery heart! For the first time in my life, I even got to hear it. While we were happy, we refused to allow ourselves to become attached.
At nine weeks I began bleeding. I was at work and raced straight home to meet Alee and once again head to GCU. I knew it was over. I was grateful I hadn’t let myself become overly attached. The doctors did an ultrasound and I saw the most bizzare thing I had ever seen, this little beanie baby was dancing! Our baby was there, wriggling and stretching right before our eyes. A more detailed scan the following day showed a tear in my uterus. It would be ok as long as I didn’t lift heavy things or do anything strenuous. We felt relieved to say the least.
12 weeks came around so bloody slowly, but we made it. I had bleeding off and on and had a few checks and all came back ok. At 12 weeks we discovered we were in fact having a little boy! There was no denying it when he was sitting spread eagled on the ultrasound! After the initial drama, the pregnancy was relatively straightforward really. I continued taking Clexane until about 30 weeks. I was treated as a high risk patient up until that point and annoyingly had so many antenatal appointments and missed a tonne of work, but once I got past 30 weeks it was all smooth sailing and I was moved over to low risk.
Oakland made his debut into the world at exactly 39 weeks, completely healthy with ten fingers and ten toes and a full head of hair. We don’t have any frozen embryos so if we want another child we will need to look at IVF yet again, but for now Oakland is all we need.