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When speaking to those who have been through IVF one of the things that comes up most is that very few people outside the world of IVF truly know what is involved throughout each faze of treatment. The gruelling day in day out of medications, appointments, blood tests, scans and injections. How could they unless you've been through it. On top of this so few people share their experiences, if they do, it's post treatment, they gloss over the details and hold back on a lot of their experience because people won't understand. How can people understand unless they're there, living it each day at a time.
Since starting this blog, when speaking to people who haven't been through IVF they have a lot of questions about the intricacies of a cycle, what's does it mean to have an egg collection? What do the injections feel like? How long does it take? How much does it cost?
So, I have made a decision to share with you an IVF cycle, from start to finish. From day one to the pregnancy test. Each step of the process, day by day. It may be a little delayed as I process and compose myself, but I am keeping a diary of my thoughts and feelings along the way.
Now I need to stress, this cycle will be a frozen embryo transfer. This means we will be using a previously stored frozen embryo that will be thawed and transferred. This is far less complicated, invasive and involved than a cycle where the eggs are stimulated, retrieved and fertilised. I'm simply not ready for another stimulated cycle at this time and I'm not sure when I will be next, emotionally physically and financially. Hopefully this Frozen Embryo Transfer (FET) cycle will be successful and I won't need to STIM again.
We have one frostie left to use, and I want to share it with you. If this is well received I may share with you again throughout a STIM cycle. Please feel free to ask questions and share your own experiences along the way, either via PM or comments on my posts. Feel free to share my journey and invite others along for the ride and hopefully others can become better informed, educated, less ignorant and can help to assist and comfort a friend when she says she is going through or has been through IVF. Please be kind, this is my life and one of the biggest decisions I have made of recent to bare my soul. I know I have your support as I have been privileged and honoured to over the past 12 months. Wish me luck!
Day 1. My first feelings are ones of excitement and optimism. It's been over 12 months since we've been in a position to do a cycle. This has been due to a combination of things, money, health concerns, seeing a new specialist, work and holiday commitments. It's been both an anxious wait for circumstances to be right, but also a blissfully ignorant one. 12 months relatively free of appointments and medications has been like living in an almost IVF free bubble, in a literal sense at least. We still had the TV interview with four corners and I started this blog which has kept me busy, however the last 12 months has felt like it has been amounting to this. A chance to use our very last of 5 frozen embryo's from a cycle that was harvested over 3 years ago and has been frozen waiting for this moment. Hopefully this will be the one!
In reality today simply means the first day of my cycle (day one of my period sorry for TMI) and a phone call to my nurse to inform her so she can start preparations and formalities from the clinics end. She will send out paperwork in the mail to fill out and sign and discusses my medication for the cycle (more on that later) but for now excitement, anxiety and nerves. Wish me luck. The day has arrived.
Getting ready to thaw our frostie!
Day 2. Today I start my medication. As this cycle is for a Frozen Embryo Transfer (FET) the medication used is much less complex than what I would take for a stimulated cycle when the eggs are stimulated and grown, then retrieved and fertilised, this is normally done with hormone injections. Our embryo has been waiting in frozen storage for over three years, so the medication I take is to prepare my uterus and create the right environment for implantation of the embryo, luckily this means no injections this cycle. Yay!
From today I begin taking oestrogen tablets 3 times a day. This is a form of hormone replacement therapy (HRT). The oestrogen is taken with the aim of thickening the lining of my uterus. Ideally my doctor wants my uterine lining to be at 8mm before commencing the next phase of my medication. I am referred for an ultrasound to check the progress of my lining in 11 days.
The oestrogen is taken on top of my normal regular daily medications for my thyroid (more on that another day) and prenatal vitamins (going onto 8 years of taking these little suckers now! Note to self to look up long term effects of taking prenatal vitamins as well as company share prices!) I have also just finished taking a 10 day course of Medroxyprogesterone to bring on my period as I don't get it naturally.
Once my lining has reached the desired thickness I will commence progesterone pessaries twice daily to help support embryo implantation. More on these little devils later. I'll give you a hint, the progesterone pessaries aren't taken orally
Day 3. Today we received the paperwork in the mail. Both my husband and I have to sign consent for the embryo to be used as it is a product of us both. I also have reams of paperwork to fill out for the hospital admission, when they do the transfer; past medical history, current medications, next of kin etc. and of course the invoice for this cycle of $3580, we get a Medicare rebate on this of $1,571, but that won't come through for a few weeks. The amount will be deducted from our credit card the day before the transfer.
This little embryo has been on ice for 3.5 years., we also get a bill for the embryo storage every 6 months for $185, so we've spent about $1,300 on embryo storage fees alone since our stim cycle. This isn't claimable on Medicare. Each time we get the bill for the storage, even though it's not a lot of money in terms of IVF it's a reminder that there is a little part of us waiting to hopefully be our future baby.
A lot of people don't think about the fact that when you go through IVF you also have to have a lot of difficult conversations. When we first commenced treatment we had to talk about and fill out forms along the lines of what we want to happen with any remaining embryo's we have if we don't use them, destroy them, donate them to medical science or donate them to another couple/person. We also had to talk about what would happen to our embryos if something happened to one of us, does the other person give permission for their partner to use the embryo after their death? And also potentially with another partner? I never imagined having to talk about that and signing my decision to be forever kept on file.
It's strange how this process of creating life can also be a reminder of ones mortality.
Day 8. Although I am only just over a week in, preparation for this cycle started around 3 months ago. Each month I have been taking medroxyprogesterone otherwise known as provera for 10 days to bring on my period and regulate my cycle in the lead up to this. Also two weeks ago I had an exploratory pelvic laparoscopy, dialation and curette. This is a procedure done under anesthetic in which the cervix is dialated and the lining of the uterus is scraped away. My specialist also inserted a laparoscope in order to view and check my ovaries, falopian tubes, cervix and uterus for any abnormalities, and also take a biopsy. I have never had this procedure before, but my new specialist wants to throw everything possible at this cycle to give the embryo the best chance possible. I'm willing to try anything and happy to be doing something different after all the failed attempts before.
The laparoscopy only took about 30 minutes under the anaesthetic, but I had to stay around for a few hours in recovery to make sure the bleeding was under control and I was recovering well. After heading home, I spent a few days a bit bloated and tender with some light bleeding, but overall it was fairly pain free and straightforward.
At my followup appointment a few days later I'm assured nothing is too abnormal apart from my polycystic ovaries (but we've known this for years, they haven't changed with 20-40 cysts on each one) so nothing obvious is causing the embryo's not to take.
All up for the procedure
Anaesthetist: $370
Surgeon: $619
Hospital: $915
Pathology: $260
Followup specialist appointment:$160
Total: $2,324
Day 13: My first ultrasound for this cycle.
This morning I was up at 5 am so that I could leave at 5.45 and drive 60 minutes to my ultrasound. My appointment was at 7 am and I arrived right on 6.45 with a little time to spare, perfect, I hate running late. The clinic opens at 7 am, so I was waiting out the front at 7 am for the doors to open with several other ladies waiting for blood tests and scans. I was first cab off the rank.
Today is an internal ultrasound with an empty bladder. More on my thoughts about ultrasound below in the link to my blog. I've literally had hundreds.
The scan showed that my lining was at 6mm, not yet where they want it to be. It's responding slowly (nothing ever goes to plan) and they were also a little concerned about some fluid remaining on my uterus, they aren't sure if this is a little bleeding from the D&C or infection. The plan is to keep up with the current treatment and rescan in 8 days. This has put the transfer off a little to perhaps sometime the week after next.
Day 21. 'Another internal ultrasound'
As with last week, my ultrasound appointment today was at 7 am, so up at 5, leave at 5.45. Today I had a trainee radiologist which is fine, its just an extra person in the room to watch and things took longer than I would have liked. A normally 5 minute scan was approx 20 minutes today.
The good news is that my lining is measuring at 8mm! Yay! So the plan for the embryo transfer can go ahead in another 8 days. They will call the day before to confirm the time of my admission.
In 2 days I need to start progesterone pessaries to support embryo implantation. I need to take 400mgs twice a day. There is a slight problem with this. I didn't realise that the script I had made up was for my previous dose of 200mg pessaries not my new dose of 400mgs. So I will actually need to take 2 pessaries twice a day, not 1. As a result I will also go through them twice as fast, and they will cost twice as much! The two boxes of 15 that would have lasted me 15 days at $80 a box will actually now only last me 7 1/2 days. That's $160 for a week of progesterone. I need to arrange a new script and to order more medication, these need to be made up at a specialist compounding pharmacy too.
Did I mention progesterone is evil? Stay tuned for the upcoming progesterone fun!
PROGESTERONE: WARNING: this post is going to get messy, gross, personal and involve way too much info. This is total over sharing of one of the 'highlights' of #IVF, PROGESTERONE PESSARIES!! Can I hear a collective supportive disgusted groan?? So a few days ago I started progesterone pessaries. Basically these are the evilest little devils ever. Give me injections any day, they are a walk in the park compared to these tiny, waxy bullets of pain. Twice a day, morning and night I 'administer' these little devils, and no, I don't swallow, inject or shove these up my nose. They go right up in my poor vajayjay. As if my lady flower hasn't copped it enough in this journey, getting poked and prodded by everyone who feels they have to. Then I go and torture her some more. What's so bad about them you ask? They are basically the same as a tampon right? No! Imagine using a slippery, slimy, waxy, dissolvable tampon. One that starts to melt on contact with the warmth of your skin, the second you start unwrapping its foil packaging, the clock starts ticking like the countdown on a bomb. You need to have everything ready, be totally prepared, unwrap and GO. Your heart rate starts to rise, you hope you get it in there first go, no false starts, if you panic, the situation gets worse, they practically dissolve right before your eyes into a dripping oily mess in your hands. Once they are away in their snug little home you would think the worst is over right? No, of course not. Firstly you need to lay down and stay still for 30 minutes after application. Don't dare move, cough, sneeze or laugh cause those little suckers will slip right out of your love canal, then it's all over and you're back to the beginning. You spend the time contemplating whether or not you put them in right, are they in far enough? Did you store them right? Are you using them the same time as you did yesterday? How will you fit your evening dosage in around your social commitments? Is it weird to lay down on the floor of the restaurant bathroom for half an hour? Can it wait until bed time? Did I set my alarm half an hour early tomorrow morning? Don't sleep in! Once the timer has finished counting down you slowly and cautiously rise like you're in the aftermath of a hurricane to assess the damage. When everything checks out you think you can begin to go about your day, but be sure you wear a liner to absorb the inevitable slow leak that's going to occur throughout the day and make you wonder if your damn body actually absorbed any of what it's meant too in the first place! Back away from those sexy lacy undies, they will get ruined, from here on its beige grandma pants for you. Then comes the endearing side effects. Most people experience itching burning thrush, in fact the bloody things should be sold with a complimentary packet of canestan. Maybe they are made by the same company, they're keeping each other in business. And don't think for a moment you can do away with the easy peasy single dose tablet type, no, you can't have that if you 'might' be pregnant. For you it's the several times a day thrush cream just because your magic jewel box isn't moist and greasy enough, it's practically a fish and chip shop now, well an itching, burning fish and chip shop. After a few days you think you've got these things sorted, you stock up on liners and canestan, you've got alarms set in your phone for every possible situation, man you're prepared for everything. Then the rest of the side effects settle in. Nausea, bloating, headaches, fatigue, cramping, increased heart rate, itchy, sensitive and/or sore nipples. The perfect combination to make you feel like a goddess sex vixen. Believe me you'll want to stab your partner in the eye whenever they look at you with their 'Netflix and chill' face. All of these symptoms are the perfect combination for someone who's trying their very best not to get their hopes up that they might be pregnant. You've practically become the text book on pregnancy symptoms with the mental stability to match. Did I mention your box gets so itchy you want to claw your eyes out? Just to top it all off, if it all works out, you fall pregnant after shoving these up your date and taking all the other medications, if it's actually positive, you'll be rewarded with extending your dosage for another 8-12 weeks (cue in party poppers). Why do we put our honey pots through these things? Seriously my poor hoo haa!!
Day 29. Embryo transfer day. To begin with I want to take you through the logistics of what is really a relatively straight forward and simple procedure. Later (maybe tomorrow) I will update you on my thoughts and feelings following the procedure. So, firstly I have to be there an hour before the transfer appointment to be admitted and checked in at a private hospital. They go through all mypaperwork and take the payment of $350 for the private hospital fee, (not covered by Medicare) this brings the total for this cycle to almost $6,500 including the D&C, medication, cycle fee, and specialist cost, not including medicate rebate. The nurses double check all my paperwork and ask me hundreds of questions to confirm my name, date of birth and address (not problem with this, make sure you give me the right embryo please!) They place a hospital wrist band on me and I have undress and put on a hospital gown then wait with a full bladder in a small private room whilst they ready everything. After about half an hour a doctor comes in to see me who will be doing the procedure, she asks me everything again in order to check everything is correct and wishes me luck. Then the embryologist comes in. The moment I'm most concerned about. She updates me on my embryo. It survived! She tells me about it and shows me a picture (this pic is my embryo) she speaks in a language I don't understand and uses words like compacted morula and collapsed cells. I have no idea if this is good or bad. But it's alive. Soon after I'm ushered by a nurse through to a small room with an ultrasound machine, stirrups and a medical chair. I'm instructed to get up onto the chair and place my legs into the stirrups. I hate this part the most. No dignity left at all. Soon after I'm in place and in the appropriate position the nurse places an external ultrasound on my pelvis. The doctor come in and inserts a speculum so that the cervix is easily accessible. A very thin catheter is then passed through my cervix into my uterus, it feels much like a Pap smear, just with a bigger audience and takes a little longer. The nurse ensures the catheter is in the correct place with the ultrasound then calls through to the laboratory so they can ready the embryo, load it into a syringe and bring it into the treatment room. Shortly later, after passing the time with small talk while I'm on show in all my glory, the embryologist joins the party bringing in the embryo. They hand a syringe to the doctor and she pushes the embryo, in a fluid, through the catheter and into my uterus. The nurse again checking the placement on the ultrasound. After this the doctor then removes the catheter and gives it to the embryologist who takes it back to the lab to check it under the microscope to ensure the embryo isn't 'retained' in the syringe or tubing. (This has happened to me once before, perhaps a story for another day). Once the lab calls back to let them know the tubing and syringe is clear the doctor pulls out the speculum and allows me to get dressed and be on my way with instructions to do everything normally until the blood test. Then it's back to work, back to reality and back to my life, trying to resist the urge to lay on my back with my feet in the air for the next 9 days. The longest 9 days ever! But basically I'm officially PUPO with this little Embie! (pregnant until proven otherwise)
Day 29 Embryo transfer day part 2. So yesterday I shared the logistics of the embryo transfer, however although it is a relatively straight forward and simple procedure, it always leaves me feeling humiliated and ashamed. This was my 5th embryo transfer, I know I should be excited and be full of hope afterwards but I think almost every time I have driven home or to work crying, hysterically. I feel ashamed and humiliated that I have just exposed everything to a small room full of people watching and making small talk. I'm angry that I had to do this for a chance of conceiving when others do it in the intimacy of their bedroom. My husband wasn't even present and I'm disgusted that it has just cost me thousands of dollars for the privilege, this is money I could be putting towards hundreds of other things, especially the future of my child, hopefully. I know I should be feeling grateful at the opportunity that medical science has provided me this chance I would not have had otherwise in another time, however on this day, embryo transfer day I feel like everything comes to a pivotal head and my emotions erupt with years of grief of infertility. For now I have to pass the time, try to stay positive, try to act normal and hang tight until my pregnancy blood test in 8 days.
Day 33. 4DP5DT (4 Days Post 5 Day Transfer) The two week wait! One of the hardest parts of this whole business is the time between the embryo transfer and the pregnancy blood test. A void of time where you're really not actively doing anything, no scans, no appointments, no blood tests, nothing to really occupy your time and feel like you have something to do. Nothing you can do that will influence the outcome one way or another. We call this time the Two Week Wait (TWW) Traditionally this is the two weeks between ovulation and your cycle end date, when you can get a definite result. For IVF we have a slightly shorter TWW because our embryo is already 5 days old, we only have to wait 9 days. But it's the longest 9 days ever! Not only is it long, drawn out and painful, it's an emotional roller coaster where your mind constantly plays tricks on you. One moment you're convinced you're pregnant, you're more tired than normal, you're hungrier than normal, your beasts are sore and are they bigger? You analyse every single symptom and feeling. It's so hard when the drugs you're taking also have pregnancy like side effects. Then you get a cramp, is that implantation pain, or period cramps? Of course, the sore breasts, bloating, it must be that you're getting you're period. Then devastation and disappointment that you're probably not pregnant. The next day you go through it all again. It's practically impossible to keep your mind off it and relax and pretend like nothing is happening when you feel like your fate is swinging on a pendulum. It's extremely difficult to find the willpower not to do a pregnancy test. This advertisement that constantly comes on my Facebook feed is no help either. Every morning after I wake up I pace the bathroom, hopping from one foot to the other busting to wee, having an argument with myself in my head that it would be too early to test, that even if I was pregnant the hormone levels wouldn't be high enough to give a reading. It will be so much more of a surprise if I wait for the blood test, and know for sure. I also think about what would happen if the urine test was positive but then a few days later it's negative and I have a chemical pregnancy, to get my hopes up, I just need to wait. I've thrown away my stash of pregnancy tests to remove temptation in a weak moment and to get me through the next few days. #IVF #pregnancytest #clearblue
Day 38 Pregnancy test day is finally here. Its bright and early and I’ve already been and had my blood test. Now I wait, a long and excruciating wait for the results. It's going to be a very, very long day.
THE RESULTS:
3 1/2 years ago when I did my original stim cycle that produced this embryo, I remember waking up from the anaesthetic and the nurse telling me that 16 eggs were retrieved. I was absolutely over the moon, sixteen was an amazing result! All the pain, needles, scans and money was all worth it. Sixteen to me meant that I would never have to go through that process again. Sixteen in my eyes and perhaps naive thoughts meant enough eggs to create one, two, maybe even three babies if we so wanted, and perhaps even enough to donate some eggs/embryos afterwards. I said to myself then, that IF I didn't get a baby out of 16 eggs, that would be enough trying and time to move on. Little did I know that sixteen eggs would turn into 9 fertilised embryo's. 9 embryo's, which after each passing day died off and stopped developing one by one, 5 days later 9 embryo's was 5 blastocysts, 5 embryo transfers gave me nothing but financial burden, a miscarriage and 3 1/2 years of sorrow and disappointment. 3 1/2 years ago I never imagined after all this that I still wouldn't have a baby in my arms or in my womb. When do you know it's time to give up? After each failed cycle and negative pregnancy test I always question if there was something I could have done differently? Was there something I did wrong that influenced the outcome? Why did my body fail me again? Most of all I question if all of this is worth it? All these years we've dedicated to our dream, the financial burden, the pain and strain on our relationship. Is it really worth it? I can hear you all say that one day when I'm holding a baby in my arms I won't question for one second what we have been through, that every moment would be worth a baby. But what if that baby never comes, what if we are not destined to be parents. What if it's not in the cards for us? Perhaps this is the universe telling us we shouldn't be bringing a child into the world. It's easy for people to say you have to keep trying, we have to pick our selves up and go again. It's easy when you're not the one going through it. How far is too far? When is it time to move on and give away your dream? We've been trying for a baby for almost 8 years. We've had 3 rounds of clomid, 4 of stimulated ovulation induction. 1 Stimulated IVF cycle, and now 5 embryo transfers. Are we at the end of the road? Can we continue to put ourselves through this pain and turmoil. Can our relationship survive more of this? Is it EVER going to be worth it? The darkness is suffocating.
