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Infertility: We are the one in five
12 months into our conception journey without any luck, we took ourselves off to the GP to discuss our concerns. I was scared. My husband was cautiously optimistic, ‘perhaps it will be something simple’ he said.
I’m happy to say I have an amazing GP, he has been there through thick and thin. If you don’t have one of those, get one. It’s an important piece of the puzzle that you will need whilst you trudge down the infertility road. My GP was calm and realistic from the beginning, he reassured us that one day we would get pregnant, he sent us for a few tests and referred us to a specialist.
Together we were diagnosed with “Infertility -the inability to fall pregnant naturally after 12 months”. It affects around 20% of couples in the wider population. The cause of our infertility is me, I have Polycystic Ovarian Syndrome (PCOS). My husband apparently has sperm with outboards for tails and jack hammers for heads.
Great, it is all me.
When I was first diagnosed, I did some research on PCOS. For something I had never heard of, it was more common than I could have imagined more info on PCOS here. Of course there are varying degrees of PCOS, I had approximately 30-40 cysts on each ovary. They were very swollen and as a result, I did not ovulate naturally. So basically it did not matter what my temperature was, I was never going to find any ferns in my saliva when looking through the ovulation microscope, and it didn’t matter what day we had sex or whether it was a full moon or not, it wasn’t going to happen without some assistance.
My first specialist appointment left me feeling great. The man across the desk who couldn’t remember my name leaned back, clasped his hands together, smiled and said “no worries, take this twice a day (metformin) and this (clomid) from day 5-10 of your cycle then have sex every day for the next 5 days. You’ll be pregnant by Christmas!” (it was October at the time). Fantastic I thought. This guy rocks. Off I went again with the newly found excitement I initially had of trying to conceive a baby.
Clomid is designed to make you ovulate. It has several side effects, of which include abdominal discomfort, bloating, headache, hot flushes, breast tenderness, dizziness, all of which happen to be signs of pregnancy also. One evening I was driving home in the dark and was completely blinded by the headlights of other cars as they passed by. I looked up the paperwork in the box and discovered I was experiencing a less common side effect which was light sensitivity.
One month went by, then two. This drug was limited to a 3 month use so everything rested on the third month. Of course Christmas came and went and I wasn’t pregnant. The blood tests showed that I didn’t even ovulate, not once, nothing. Our world crumbled yet again. We were so hopeful that this was going to be our simple solution, our chance, but unfortunately we were back to square one.
So back to the GP it was and another referral to a specialist, who suggested we begin the process of IVF.
IVF
Australia’s first IVF baby was born in 1980 after nearly 20 years of research, experiments and trials. Since then, science and technology has come a long way with just over 37,000 Australia and New Zealand women undergoing an Assisted Reproductive Technology (ART) cycle in 2013 according to the Australian & New Zealand Assisted Reproduction Database (ANZARD).
The clinic we were referred to boasted that 85% of patients under 39 years of age conceived within 2 cycles. 85%! That is a promising number. Overall, Australian IVF success rates claim that approximately 40% of women under the age of 30 who are undergoing an embryo transfer using their own eggs, result in a clinical pregnancy.
Yes it is a very successful road to parenthood for so many people, and I am extremely grateful that we have the opportunity in this day and age for the chance at becoming parents in this way, but the IVF journey is one that is demanding, emotional and strenuous. This our experience:
Before we could even begin, there are many hoops you need to jump through. Again we had to have a series of tests. Yes, we had had many with the previous specialist, however as we were now at a new clinic we had to have them all done again, and then some. For me it was blood tests on day 1 and day 21 of my cycle to check Progesterone, Estrogen, Luteinizing Hormone, Follicle Stimulating Hormone, Antimullerian Hormone and Thyroid Stimulating Hormone, as well as SDS, HIV, Hep B & C. Another internal ultrasound to measure my uterus, ovaries and cervix. My husband also had to have blood tests and semen analysis. Then there was the paperwork- police checks, reference checks, financial checks, and medical checks. Ironic right? We felt like (and to some extent quite literally) as if our personal lives and our bodies were being studied under a microscope to ensure that we would be fit parents. What a kick in the teeth, not only was it depressing that we were even here, but we had to justify that we would make good parents, all while there are millions of people out there falling pregnant every day, in the privacy of their own homes, without a scrap of judgement or analysis. We felt degraded by the fact that our child would be conceived in a laboratory. All this before you even begin.
We also had to attend several counselling sessions, one each individually, then one together. We had to discuss with someone we never met what our motivation was for starting a family, how many children we wanted to have and, what we wanted to do with any leftover embryo’s, destroy them, donate them to science or donate them to someone else. We also had to talk about what would happen if one of us passed away whilst we still had embryo’s remaining. Did we want the other partner to have full access to them to potentially create a life without one of us around.
Once we were done with all the hurdles the true roller coaster began, we had only just started and we were already exhausted.
We kicked off the IVF rollercoaster with ovulation induction (OI). The basic method of this is to use a drug called Follicle Stimulating Hormone (FSH), injected daily into the abdominal wall, to encourage the growth of 1-3 follicles (the sac containing the egg within the ovary) to the point of maturity, then ovulation, then you have intercourse and hopefully achieve pregnancy. In theory it isn't complicated, and for some people I suppose it isn’t. However in reality for us it was.
Every second day I was up at 5 am to drive an hour to the clinic for a blood test and pelvic ultrasound around 7 am. I would then head straight from there to work for an 8 am start. I would spend the day trying to keep my mind occupied whilst anxiously awaiting the call from my nurse who would inform me of the results and then determine the dosage I had to inject for the following two nights.
This happened day after day. My stomach and arms turned into bruised lumpy pin cushions. I made sure I wore long sleeved tops to hide the bruises and tried desperately to hide the pain from my co-workers when my stomach rubbed against my desk at work. I became a walking zombie from the lack of sleep. I found it very difficult to just go about my life. I couldn’t concentrate at work or sleep at night, in truth it ruled my life. We couldn’t plan anything, between having shots at the same time each night and having to be up early and off to the hospital in the morning, life just simply revolved around falling pregnant. I could have driven that route to the clinic with my eyes closed. Some mornings I swear I did. I became so familiar with the sonographer and phlebotomist that I knew each of their names, whether they had kids and all the other various mundane things about their lives. They took note of the book I read in the waiting room and asked for updates. It’s fair to say that our lives revolved around the process.
My hormone levels are unpredictable which meant that the process would often drag on for 4 weeks at a time. I learnt that having PCOS or being a ‘cyster’ meant that the process is a very complex one. For the first 3 weeks nothing would happen, my hormone levels wouldn’t rise, the follicles wouldn’t grow, the dosage would be increased and repeated, day after day, with no growth. Then all of a sudden, every follicle would take off and each ovary would swell with the pressure of the expanding follicles. Not only is this painful but it also put me at risk of ovarian hyper stimulation or ovarian rupture. If there were more than 3 mature follicles then the cycle was cancelled due to the risk of multiple pregnancy and we would have to wait until next month. This was the case for us three times, they even charged us a cancellation fee.
When the cycle was cancelled I would stop the drugs and we had to sign a form to say that we would ‘abstain’ at doctors recommendations as the risk of falling pregnant with multiple (and we’re not talking 2 or 3) babies was high. When I stopped the drugs I suppose the expectation would be that my ‘natural cycle’ would still progress, meaning that I would get my period within another week or two, but nothing went to plan. As soon as the drugs stopped my hormones stopped. I would wait for my period with swollen ovaries for several weeks, in limbo, wanting to start the next cycle. Sometimes if it had been quite some time my specialist would prescribe a drug to ‘bring on’ my period. Let me tell you, this is by no means a pleasant experience. The period that followed was extremely painful and very heavy. Once I spent a whole night unable to sleep, on the bathroom floor vomiting, fainting and unable to speak because I was in so much pain. The result was a trip to the hospital and another drug prescribed to stop the bleeding.
On our fourth attempt at ovulation induction, following three ceased cycles the doctors approached it much slower, very slowly increasing the hormone dose which pushed the process out over almost 5 weeks. It was around this point that I wondered how anyone actually ever fell pregnant naturally. In the end we were given the go ahead to have the trigger injection to induce ovulation and to do the ‘bd’ (baby dance). Then came the dreaded 2WW (two week wait) before we could test for pregnancy.
This is the hardest 2 weeks of the whole process. Your mind plays tricks on you, every tingle and feeling you get, you tell yourself is a ‘sign’ of pregnancy, or ‘implantation pains.’ You resist the urge every day to take an at home pregnancy test and wait for the blood test on day 14, post the trigger. Finally the day comes, your whole life feels like it is on a pendulum. You tell yourself its fine if it’s negative, you’ll pick yourself up and go again. If it’s positive you’ll run from the waiting room shouting from the roof tops. Then it comes………..negative. The sky could fall in. I felt devastated; in fact this is a major understatement. I felt like shutting myself into my room and sinking into a black abyss. But you pick yourself up, get out of bed and put one foot in front of the other, feeling as though no one understands the turmoil you are going through. Everyone is going about their lives naïve to the fact that your world is falling apart.
We were advised that our best chance moving forward after 4 failed OI cycles was in vitro fertilization. IVF. This is where the eggs are removed from the ovaries, fertilized outside of the womb and put back in to hopefully achieve pregnancy.
The best decision we made at this point was to take a break, not only for our emotional wellbeing but also to save the $15,000 needed to begin the next cycle. It was so nice to have some respite. I went off all my medications that were reaping havoc on my body, I didn’t have to worry about specialist appointments, scans, blood tests and injections. We settled back into the comfortable routine of everyday life for a while.
Several months later we made the call to my nurse on day one of my cycle and it all started again. Unlike OI, the aim of this IVF cycle was to ‘harvest’ as many mature eggs as possible (without risking ovarian hyper stimulation). Whilst in OI the objective is for ‘1-2’ eggs to remain in the ovaries for ovulation, in IVF the eggs are removed, fertilized outside of the womb and grown to an embryo, with the hope that there is 1 embryo there to be placed back into the womb, with any remaining embryos frozen for later use. The drugs I had to inject were much the same, however it wasn’t the constant monitoring, scans, bloods and adjustment of meds I had with the OI. Instead the dosage started off high to be injected each day and we hoped for the best. Approximately 10 days in I went in for my first scan and blood test to see whether the follicles were growing and the hormone levels rising, which they were and the egg collection was scheduled for a week after this. 35-38 hours before the egg collection I had a different ‘trigger’ injection to help with loosening the eggs from the follicle wall. This injection, unlike the other hormones which came in a dosage ‘pen’, came in two separate vials that had to be broken and mixed together then drawn up before injecting.
For the egg collection (also called harvesting or retrieval), I had to take a day off work as I was admitted into hospital for the procedure to take place under anaesthetic. The procedure involved ‘aspirating’ the eggs from the follicles by inserting a needle through the vaginal wall. I was so nervous as I went under, and was desperately hoping for as many eggs as possible.
While I was having my procedure my husband had to do his part and produce a fresh sample to be used for fertilization. They were using a method called standard insemination where the sperm and eggs were simply placed together in a dish overnight to ‘naturally’ fertilize. They generally use this when there are no issues with the sperm, which thankfully is the case for us.
I was delighted to wake and discover that I had 16 eggs successfully harvested. This was a great number! Most people go through all of this to have anywhere from 1-5 eggs harvested, so we were over the moon! However it also meant that due to the high number that they harvested, the procedure was more painful as they had to pass through the vaginal wall and into the ovaries with the needle multiple times. It’s also worth mentioning this was not a procedure that I recovered quickly from. For several days I had bleeding and also experienced several weeks of bloating and tenderness. I was unable to sit down, or stand up without a fair degree of discomfort. My ovaries felt swollen and painful and my uterus tender. I was glad when this finally subsided.
After the procedure we waited an anxious 24 hours for a call from the clinic to hear how many eggs had fertilized. Approximately 50% off the eggs are generally lost though each stage of the process. Of our 16 eggs, 9 fertilized naturally and normally, 5 did not fertilize, 1 fertilized abnormally and 1 died after fertilization. Once fertilized, the aim was to grow the 9 fertilized embryos in the lab to the blastocyst stage, which takes approximately 5 days. This is the stage an embryo normally moves from the fallopian tubes down into the uterus ready for implantation. The embryo is grown to this stage to give it the best chance of success as well as making it as strong as possible to survive the transfer or the freezing process without compromising its life. Unfortunately only about 30-50% of fertilized embryos make it to a blastocyst stage. 5 days later we received the call that 4 of our embryo’s had died, 4 had successfully made it to blastocyst 3 were classified as B grade and 1 C, with a 5th showing potential. We were happy with this, we hoped of course that we would achieve a pregnancy straight away and that our other embryos could be frozen for later attempts at a second or third child, ideally I never wanted to go through a harvest again. My embryo transfer was scheduled for the following morning.
The embryo transfer took place at the clinic under guided ultrasound. Here I am again, on my back, with my legs in stirrups, staring at that dam ultrasound wand and the black and white monitor. Unlike the standard ultrasounds where it’s just you and the sonographer in the room to monitor your follicle growth, I was privileged enough to have a sonographer, nurse, IVF specialist and an embryologist all crammed into a room no bigger that my bathroom, trying to make small talk. A catheter is passed through your vagina and cervix under ultrasound. You then wait with all your glory on show whilst the embryo is prepared and brought down from the lab. They point out the embryo on the screen, the tiny glowing dot as it is passes through the catheter into the sweet spot. I remember being overjoyed finally having my very first embryo on board. As we say on the IVF boards I was officially ‘PUPO’ (pregnant until proven otherwise). The world was my oyster. All there was left to do now was wait, the ‘Two Week Wait’.
The two week wait is that dreaded time between when you have an embryo transfer (or ovulate) and when you find out if you're pregnant or not. Whether you’ve been trying naturally, or using fertility drugs it’s still the longest, most stressful part of the whole business. You walk a fine line between having a positive outlook where you tell yourself this time is going to be different, you're going to have a calm mind, a carefree attitude, and send all your energy into creating a warm welcoming environment where your little embryo can stick around for 9 months, to within a split moment feeling like you’re completely going to lose your mind if it doesn’t work. Often the positivity sticks around for all of 5 minutes, when you spend your time convincing yourself that every twinge, hunger pain, burp, wind and fart feeling is actually a 'sign’ that you are in fact pregnant and that little ‘embie’ is getting itself nice and comfortable in your uterus. Then you quickly plunge into utter despair and convince yourself that you are in fact not pregnant at all and it’s just your mind playing tricks on you, that you are mentally deranged and have clearly been going through this whole TTC thing for far too long. You constantly have a mental battle with yourself about whether or not you will pee on a stick or wait until the blood test. When you do finally cave (you always do) and pee on the stick and get the negative, you tell yourself it’s too early into the cycle for an accurate reading, you’ve drunk too much water and diluted the hormone levels, tested too late in the day or bought a dodgy cheap test off eBay. You leave the test out and go back and look at it every 5 minutes, just in case it sneaks that second line in there, you turn it around, hold it to the light just in case its a squinter, you take it outside and then begin to hallucinate the second line and ask your partner for their opinion before testing again.
By the time the day finally comes along, a very long 14 days later, you drag yourself into the clinic for the blood test and tell yourself you really don’t know either way but hope like all hell that when you get that phone call later that day it will be good news. They tell you they will call with your results between 2-5 pm. That’s a THREE hour window, 180 minutes, and you watch every single one of those minutes go by. Every time you hear a phone within a 10 meter radius your heart skips a beat and your stomach drops. When the phone call finally does come, your mouth is dry, you can’t even speak and before you can comprehend anything, your world comes crashing down around you. It’s negative.
Each time after a cycle is negative, my world implodes, it doesn't matter how realistic I try to be about the possibility of it not working, I am still crushed every single time. It is always hard to pick myself up and get my head around trying again. I just want to crawl into a hole and shut the world out. Each time I feel like the money we spent was a complete waste. I can never do back to back cycles like some people do. I need to grieve and heal emotionally each time. I always have to feel ready to throw all my energy into it again. Sometimes this takes a month, sometimes it takes 6. There is no set timeline.
Every time my cycle starts, I call my nurse to tell her I’m ready to start another round. I tell myself this time is going to be different. The cocktail of medications start straight away, and that's not counting the ones I take year round. Every day brings with it an introduction of something different as I progress through the cycle. It could be injections, depending on if I am doing a ‘stim’ or frozen cycle. I take estrogen tablets 3 times a day and insert progesterone gel or vaginal pessaries twice a day to support the continual thickening of the uterus and hopefully the embryo. If you open my fridge on any day, it is filled with a chemist looking shelf of vials and temperature sensitive drugs. I have one of those ‘sharps’ containers in my cupboard that I have to take regularly to my local chemist to dispose of. I am degraded to feeling like a drug addict when the pharmacist brings out the larger sharps container for me to throw mine into, as they aren’t allowed to touch mine. I could write a long list of all the places where I have had to inject myself including movie theatres, parking lots, at work, in toilets, on holidays and out for dinner, whilst trying to be discreet.
One day when I was sitting in the tiny waiting room about to have an embryo transfer I had a visit from the embryologist to give me an update on how the embryo had thawed. She sat down and very seriously told me that she had a ‘feeling and just knew’ that this was going to be my time, she assured me that she never said this to people. Around half an hour later, after I had the embryo transfer, they withdrew the catheter and took it off to the lab to check under the microscope, as is their procedure, to make sure the embryo wasn’t stuck in the tubing. Sure enough we had a ‘retained embryo.’ I looked from face to face, concerned and worried about what exactly this meant for my little embie and they all smiled at me and assured me that this only happened in 1% of cases and that not only was my embryo completely fine but that it was actually good luck. The embryologist came back into the room beaming, “see I told you this is the one, this one is extra sticky!” Of course, two weeks later, it failed.
In total we have done 8 cycles over 4 years and been trying to conceive for nearly 7 years.
Over those 7 years I have changed. I knew from a very early age that I wanted to be a mother. I loved children. I spent my teenage years babysitting for friends and family. I always wanted to hold and coo over babies. People would always said that I was a ‘natural mother.’ I would cross a room to hold a newborn and was always sitting on the floor playing with the kids. My dream was always to get married young and have babies, lots of them, I wanted to be finished having my family by the time I was 30. Now I would give anything for just one baby.
Over the years, the stress of infertility has changed me. The smell of a newborn no longer fills me with feelings of excitement, instead I’m filled with an overwhelming sense of dread and sadness. I have found myself making excuses not to hold babies, “I can’t hog him to myself, it’s ok, you have a turn.” Walking down the baby aisle at the supermarket makes me feel ill, to the point where I actually avoid it. Attending a baby shower, christening or first birthday can send me into a spin of anxiety and anguish. A pregnancy announcement is gut-wrenching. When you tell me you’re having a baby, my tears are a combination of happiness for you and sorrow for me. My grief is separate to my happiness and at the same time everything is rolled in together. It's completely conflicting. Sometimes I cry for 5 minutes, sometimes for days. I am completely ashamed of this and I feel like a terrible person. Each and every time I am told that someone is pregnant all my grief seems to slap me unexpectedly in the face.
Every Christmas is more and more difficult, as each Christmas and New Year approaches my husband and I quietly say to ourselves that next year will be different, next Christmas will see us finally with a baby on the way but then a year goes by and we are left feeling further away from our dream coming true. Every birthday reminds me that I am another year older and another year without a baby. Every six months we receive an invoice in the mail for our embryo’s in storage, every 6 months we wonder if these will ever be our dream baby.
Motherhood has gone from something I wanted more than anything, to something I fear, an enigma. I’m scared that I’m not meant to be a mother, perhaps the universe is trying to prevent and protect me from something. When we talk about our future, we don’t say ‘when we have children’ anymore, we say ‘if’.
The true hero in all of this has been my husband. He has put up with my erratic moods, hysterical crying, taken days off work to attend appointments, held my hand during scans and procedures, and has been there every step of the way. He comes over and gives me a kiss when he sees me staring off into space, knowing I’m dreaming of the baby we may never have. He is my rock. We have always been honest with each other and told each other how we are feeling and what we are thinking, even if it wasn’t pleasant. At many stages I have felt that this whole process was something he never signed up for and felt guilty about the fact that this is caused completely by me. On many occasions I have told him to go, that he didn’t need to go through this, that he could have babies with someone else, I have tried my hardest to push him away, but he’s always there, my knight in shining armour, and his response is always the same “I don’t want to have babies with anyone else, I want to have babies with you, I love you.” He really does need a medal for what I have put him through.
Our family and friends have also been amazingly supportive in every step of the way, never judgmental and always supportive. They have ridden the waves, shared the lows and shouldered the pain while always standing solid beside us.
I constantly consider how far we will go on this path, when will we decide to turn around and start walking another direction, I don’t know. I assume I will know when we get there. I just know right now I’m still stepping one foot in front of another.
