On Monday we attended our post-IVF follow up appointment with Doctor Holiday, who had just returned from her 12000th vacation the previous Friday. It’s what we in the biz (if being infertile is a biz) refer to as the WTF appointment.
Because….WTF? Why did my cycle fail? Why is this clinic so crappy? What are you going to do about it? When do I get my baby? You get the gist.
Normally I attend these clinic appointments alone because Doug has a busy job, but this time he insisted on coming along. Mainly because he was no longer prepared to let this doctor waste our time and our money, and he knows I’m too passive to actually stand up for myself most of the time when it comes to medical professionals.
We went into this appointment with an understanding that we will not be undertaking any further cycles of IVF with this doctor. We have absolutely had enough of her and her bullshit. It’s sad really, because she is one of the top rated IVF doctors in our state and came highly recommended. We were told she was the best of the best.
We have actually spoken to a clinic interstate in the past week. It is one of the top 3 IVF clinics in the world. Yes, the whole world. Their success rate in my age group is 43% higher than the average of all other Australian and New Zealand clinics combined. Those are some pretty decent odds, hey?
We’ve already been matched with a doctor who would suit our needs – a doctor whose areas of speciality are genetic problems, PCOS, and repeated IVF failures. And he has no qualms dealing with interstate patients, and will even do some of the initial consults via skype. It sounds perfect for us. Only problem is, we’ll need to be flying back and forth for procedures because it’s too far to drive. That means there will be added expenses of flights and hotels wrapped up with this clinic.
We have done some serious number crunching this past week and realised that our life savings are almost completely spent. Multiple fertility surgeries and IVF cycles will do horrible things to your bank account.
But we’ve also realised that paying for one or two cycles at this fancy clinic is probably going to cost around the same as multiple failed cycles here in Melbourne with our current doctor. And if we go to the clinic interstate and succeed in one or two cycles, we’ll have our baby a whole lot quicker than if it takes another six cycles up here. Let’s not even factor in how fat and pimply I will be in six cycles time. I’ll be so sick and tired and grumpy. I’d much prefer to get our cycles over and done with now. Get what I’m saying?
Despite all this, we went to see Doctor Holiday for a couple of reasons. Firstly, we wanted closure on our 5th failed cycle (4 failed IVF cycles plus a failed FET equals 5 failed cycles in my book). We wanted her opinion on where we had gone wrong. Secondly, we wanted genetic testing done and figured it would be just as easy for this doctor to order it for us. That way when we see the new doctor (let’s call him Doctor Fancy-Pants) we’ll be able to already provide that information.
Thirdly, and most importantly, we still have one embryo on ice at this clinic. Our little day 6 low quality blastocyst, Jelly. We have a ‘no family member gets left behind’ policy in our household and we aren’t going to move to an interstate clinic and leave Jelly all on his own. So we decided we would try to thaw Jelly and go for an FET cycle before we make our first appointment with Doctor Fancy-Pants.
And now that my rambling introduction is over, let me get back to the actual appointment because I know that’s why you’re all reading this blog post…
“So Sadie,” Doctor Holiday started. “How did the last cycle go?”
“Bad.” I said bluntly.
“No? Not actually bad?” she asked, raising her brow.
“Yes.” I replied. “Actually bad. We didn’t get pregnant and we didn’t get any frozen embryos. No positive outcomes whatsoever.”
Doctor Holiday kept sort of smirking at me after that. Like she was surprised the cycle hadn’t worked, and also surprised that I was being less friendly than normal, and her reaction was to smirk so that the situation was less uncomfortable for her.
We all sat down and she reviewed all of the notes in my file that related to my last cycle. She analysed the embryologists notes regarding our embryo development and after a while stated that the cycle had quite clearly failed because of an egg problem. I mean geez talk about a slap in the face. I understood the news was coming my way, but didn’t expect her to put it quite so harshly.
“So if it’s an egg problem you should fix the eggs.” Doug said, seemingly pleased to have contributed something so useful to the conversation.
My heart went out to my poor husband in that moment. I knew he had about three more seconds of ignorant bliss, before the doctor broke the bad news to him.
“Well actually we can’t fix eggs.” Doctor Holiday explained. “We can work with endo, blocked tubes, PCOS, poor sperm quality, pretty much everything. But we really don’t know anything about poor egg quality and we don’t know how to fix it.”
I expected a whole range of emotions to cross Doug’s face as the doctor’s words sunk in. Instead, I saw recognition in his eyes and then his entire face went blank. He had retreated right in front of me.
“Before we go any further I think I need to be tested for genetic problems.” I said, turning back to the doctor. “How do we do that?”
“I completely agree. We need to do genetic tests.” Doctor Holiday nodded. “Do you know if your previous IVF clinic carried out the tests? Best to check before we order the tests again because they’re very expensive.”
The doctor then made a phone call to the pathology lab, and it was confirmed that I had karotype testing done in 2012, which was news to me. I mean honestly I had so many tests done in 2012 I couldn’t even describe half of them. Plus, the cycles of IVF I’ve subsequently undergone have pretty much killed my memory. Everything upstairs in the old noggin is a little hazy now.
“What did the tests say?” I asked in surprise. “Can I get a copy of the results? What exactly did they test for?”
“Oh they would have done carrier testing.” the doctor said dismissively. “And if no one mentioned it to you two years ago then I’m sure the tests are fine so we won’t even bother looking at the results. If there was a problem with your genes they would have mentioned it.”
And that was it. I wasn’t even given a copy of the results. I have no idea what the tests were for. Was I tested for the MTHFR gene mutation? Was I tested for other genetic mutations? I have no fricken clue, and apparently I never will.
The doctor did order the same tests for Doug though, just to make sure he isn’t a carrier of anything untoward either. I looked at his pathology request form and all it says is “karotype testing – abnormal embryo development” so that doesn’t shed any light for me. Can anyone who has had these tests done, or is a carrier of something that affects fertility tell me how and what the process was? I really shouldn’t have to ask this question on the internet. It’s a shame my doctor isn’t more forthcoming with information.
After we had discussed the tests, Doctor Holiday started saying some very odd things.
She told us that she had just recently been to a conference where IVF doctors from all around the world discussed whether or not IVF is actually working as it was intended to.
She said the fact is that only 5% of the most fertile woman’s eggs are genetically normal. So when doctors are stimulating multiple follicles to grow through the use of FSH drugs, perhaps all they are really doing is stimulating the other 95% of eggs. These are eggs that were never supposed to be ovulated. They are the bad eggs, and there is a reason that the body wasn’t developing them naturally. So when they are removed from a woman’s ovary of course most of them don’t fertilize, or develop as they should, or implant after transfer, or make it to freeze.
She went on to say that even when you get to the blastocyst stage they’ve found only 40% of blasts are genetically normal. So even if you make it that far, there’s still a 60% chance that the blast is genetically abnormal and therefore will not result in a pregnancy. And the problem is there’s really no way to tell. Genetic testing on embryos can search for particular abnormalities, but not all possible abnormalities and for that reason the testing does not significantly increase the rate of pregnancy when it’s carried out.
Then she started going on about how studies have shown that IVF parents make better parents than “spontaneous parents” because they have already been through the horrible physical and mental stresses of infertility. They’ve hit rock bottom already, they’ve seen the worst that life has to offer, so staying up all night with a crying baby is a cake walk.
But then the doctor said that people who are going through IVF and then give up before they get a baby were never going to make good parents anyway. If a person can’t handle the stress of IVF then they weren’t ever going to handle the stress of parenthood. I mean seriously how offensive is that! People stop treatment for a number of reasons. Sometimes people run out of money and can’t afford more treatment, sometimes they’re too old, sometimes their medical problems prevent them from continuing.
How rude to basically infer that those who discontinue IVF are quitters who were never going to be good parents! It was almost like she sensed we weren’t planning to come and see her anymore, and she was trying to indirectly convince us to keep attending her clinic. Like she wanted us to know if we stopped doing IVF with her she would assume it was because we were lousy quitters who were never going to be good parents.
Then she kept on saying that even though my eggs clearly had issues this cycle, they seemed to be okay in the previous cycle. We had 7 eggs picked up, 4 fertilized, 2 were transferred back to me, 1 was frozen.
“That’s an average IVF cycle.” she insisted. “So I don’t think there’s any need for you to stress about this failed cycle, because in your last cycle you were Miss Average. If you hadn’t been average last cycle then it would be major issue. But you were average. Miss Average is good!”
“Let’s discuss ‘Miss Average’ in terms of IVF.” Doug piped up. “What does Miss Average look like? Is she Sadie’s age?”
“Well, no.” Doctor Holiday admitted. “The average female in Australia going through IVF is 37 years old.”
“So because Sadie was over a decade younger than these women when she had her eggs picked-up, can we assume then that she should in fact not be Miss Average?” Doug asked. “And the averages shouldn’t apply to Sadie because 26 year old and 27 year old eggs should be of much higher quality than a 37 year olds? Being average would actually be a poor outcome for her, in this case?”
“Yes when you put it like that.” the doctor agreed. “But let’s not forget, average is good sometimes! And Sadie was average!”
It was sort of like groundhog day or something. Perhaps the doctor had become selectively deaf. It was like she completely glossed over the point that Doug was trying to make.
The ‘Miss Average’ IVF female in the under 30 age-group conceives after one cycle of IVF. Over 90% of under 30s in Australia have a clinical pregnancy after two cycles of IVF. Those are the averages I should be compared to. Not the average of IVF women overall, whose eggs are 10 years older than mine. And even judging me by those averages, I’m still well behind.
“Ok Sadie let me just ask you this,” the doctor said. “Are you ready to go again or do you want to have a break?”
“No.” I blurted out. “No break. I want to go again. I want to try with our frozen embryo.”
The doctor stared at me for a long time, almost as if she was weighing up whether or not she should allow me to actually cycle back-to-back, or if I did in fact need a break.
“Ok.” she finally relented. “What day of your cycle are you on?”
“Five.” I said. “I still have my period.”
We then discussed my options, in terms of FET protocol. Because I don’t ovulate we can’t do a natural FET cycle, so I really only had two choices. One was to take low doses of FSH to stimulate a follicle to grow, and my body to ovulate. The other option was to take estrogren tablets to build the lining of my uterus and progesterone to stimulate my hormones, then do an FET without ovulation. The latter was the protocol we used for my first FET and it is the one I chose this time as well.
Why? Simple. Ovulation is a big deal for me because I’ve never ovulated on my own before. So when I see and feel those follicles growing (albeit thanks to the scientific wonder that is FSH drugs) I feel a great sense of achievement and attachment. The idea of growing an egg and then wasting it just doesn’t sit well with me. I wouldn’t be able to resist the temptation to try and fertilize that egg the old-fashioned way when I eventually did ovulate. Blocked tubes or not, I would still try.
So the doctor wrote me out a script for Ethinyloestradiol 50mcg and instructed me to take one per day. It’s a drug I’ve actually never used before. After eleven days, I will see her again and she will scan me to check the lining of my uterus. Once my uterus lining is looking thick and ready, I will start on progesterone. Then they will attempt to thaw Jelly. We are also going to go for assisted hatching this time around, because Jelly has a super thick shell.
And if the FET doesn’t work, we’re off to see Doctor Fancy-Pants.
All in all I’m really happy with our decision to not return to Doctor Holiday after our FET. She is just too expensive, and we aren’t getting bang for our buck. She’s better than our first fertility doctor, but nowhere near the standard some of you ladies seem to be getting from your doctors. We just want someone we can trust, and someone who we believe really does care about us and our plight.
On the way home from the doctor, we took a call from Doug’s father. The bluetooth in the car picked up the call so we could both hear and speak to him. He’s just the greatest guy, I love him so much. He’s supportive and caring and always willing to help us. But he said something that kind of upset me.
“Sadie,” he said. “I just want you to know that if you can’t ever have children, nobody in our family will blame you and nobody will think you’re defective.”
I know he was trying to make me feel better, but it just felt like a slap in the face. Why would he use the word defective? Had people in Doug’s family been using that word to describe me? I wouldn’t put it past them.
And to be honest, even though majority of our infertility problems are my problems, I’ve always thought of it as a joint struggle. Doug has grade 3 sperm with some morphology problems, which is why we need to do ICSI. I didn’t realise that if we can’t have children people will be solely laying the blame on me. That was a bit of a wake-up call. I know his dad was saying he wouldn’t blame me, but all I heard was the word blame.
“Dad don’t say things like that please.” Doug snapped. “We don’t need to be saying those types of things to Sadie just yet ok?”
To Doug’s credit he got his dad off the phone really quickly and then changed the subject to try and keep me from dwelling on the conversation, but it’s a bit too late. I can’t stop thinking about it. In my mind I’ve turned all of my father-in-law’s words around. I’m defective and I’m to blame.
I just need to stay focused now. My expectations for Jelly are very low, but I am mid-cycle now so I just need to keep going forward. Take every day as it comes. Keep breathing. All that other motivational junk.
After all, I don’t really have much choice…
As always, I’ll keep you updated.