If IVF clinics were honest about failure rates, would more patients say no to dubious treatment?
My own factors suggested that I was likely to be a ‘poor responder’: nearly 38; stage 4 endometriosis; a blocked fallopian tube; zero antral follicles, and an Anti-Mullerian Hormone (AMH) result of 2.4 (‘satisfactory fertility’ starts at 15.7 and above).
I did some research and learnt that I definitely had a disastrous set of predictors: I estimated that our chances of success from one €6,000 cycle were probably 15%, and would fall to less than 10% if we failed that.
But was I wrong? I wasn’t an expert so how could I possibly know?
Clinics are selective when it comes to providing success rates. Shockingly, both clinics I attended still only publish biochemical and clinical pregnancy rates on their websites.
They know that live births should be quoted. Trying to find genuine IVF live birth rates in Ireland? Needle, meet haystack.
We attended our first appointment armed with all our info, expecting to be offered a tailored cycle. Hadn’t they sent me for all those tests because one size does not fit all?
Not so. The doctor, described as a ‘dote’ by the receptionist earlier, barked at me to stop asking questions.
The ‘long protocol’, or agonist, was the only option on offer – their ‘standard’ cycle that they ‘put most of their women on’. I had read everywhere that this would be the worst fit for a likely poor responder.
The doctor dismissed my AMH test – ‘Who told you to have that?’ she grumbled – and said that poor antral follicle counts had no bearing on success rates.
What? She was disagreeing with everything I’d read, and with her colleague who had ordered all the tests.
She snapped at me when I raised my factors, and I could see my husband was entering his pressure-cooker stage. She sensed our consternation and became flustered and aggressive, insisting we start the cycle in three days – ‘Your AMH might be zero by now!’
So the AMH did matter now? It was just a mess.
But why was I surprised to be shouted down? I had already met with the clinic’s surgeon, and I’d made a joke about how everyone uses Dr. Google these days.
She replied: ‘Ah yes. The horses have learned to read’.
So we defected to another clinic. They said that the long protocol would be disastrous. I asked them about my risks, as I would have to take estradiol and progesterone daily, as well as very high-dose stims. My mum had developed estrogen-receptive breast cancer at age 34.
Now came the most discombobulating moment so far: the walrus-faced consultant mimicked a set of weighing scales with his hands and smarmed: ‘It’s all about priorities…. baby up here….cancer down there….’
Then, nefariously: ‘We’ll get you a baby by Christmas’.
How I loathed this experience. I should have stopped at that stage, armed with my trusty indicators of failure.
But here’s my beef with the clinics: they constantly played down any possibility of failure.
When I asked about live birth rates, they didn’t have any. They waffled about rates in the UK (about 28%) and conceded I might be ‘slightly lower’.
They put me on a very aggressive Microflare cycle, on the maximum dose (600 iu) of the stimulating drug Puregon (FSH).
No evidence exists that this dose is effective.
Now I read everywhere that poor responders did not usually benefit from high-dose stimulation. What fresh madness was this? I felt permanently bamboozled.
Estradiol was prescribed to prepare the womb lining. But the latest meta-analysis showed that there was no difference with or without it. It did, however, worsen symptoms of endo and should be avoided where there is history of breast cancer.
And progesterone, the supplementation of which was equally controversial and studies could not conclude whether it enhanced the likelihood of pregnancy.
And Clexane, a blood thinner that gives you rainbow bruises, again on no firm basis.
And Prednisolone steroids that woke me up on the half-hour. ‘Just in case’ I had natural killer cells.
I had a code red situation on the Microflare: my Lutenizing Hormone levels surged. I read that a premature LH surge can nuke the eggs. It was everywhere in the literature that aggressive flare protocols carried a high probability of surges, risking a poor outcome. Could they not have predicted this?
It was perplexing. I felt in my bones that the cycle would be a disaster.
It was. I was now officially a Poor Responder: I only got four ‘very abnormal’ embryos that expired one by one, never to be implanted.
The embryologist sneered when I asked whether the flare protocol might have compromised the egg quality. He called it ‘an unlucky month with bad eggs’. We could keep trying until we ‘hit on a good month’. That sounded like a better deal for them than me.
I suspected that I should call it a day. But I wanted this confirmed, for hadn’t they been so optimistic all along?
The clinic were keen to salvage things with an experimental protocol, two doctors both telling me ‘you have a good chance of success with this!’. But when I read about the main drug, Buserelin, it sounded catastrophic for poor responders. When forced, my doctor admitted, ‘Yes, it’s likely to be detrimental for you’. We cancelled.
Could it be the case that there just wasn’t a protocol for poor responders?
Then they rang me to push an estrogen priming cycle, for which they would only say (when hassled) that success rates ‘might be lower than 20%’.
The risk of ‘priming’ my body with estrogen when I had a close family history of breast cancer? Gallic shrugs all round. We half-heartedly agreed, planning to cancel.
I requested a final meeting where I would demand a percentage chance of success. They commenced with the usual nebulous flannel: ‘we really don’t know until we start it’.
I decided to quote a study, thinking they’d snigger, but they were tired of me now. I presented the success rates given for women with severe endo and low ovarian reserve, and suggested that I was looking at 10%. The consultant sighed and finally said it:
“You are correct – 10% is a close ballpark estimate. Probably less”
I was almost euphoric – I had beaten them down and forced them to give me my own personal chance of success. After months of lofty twaddle.
But I felt ill. I’d been taking the Pill to prepare for the estrogen priming cycle and I was bleeding abnormally, feeling horribly bloated. I’d described this to them at three appointments but they’d been irritated, told me it was my ‘disorderly ovaries’.
Carry on with the Pill, they said.
On a hunch I asked for a hCG test. I was five weeks pregnant and miscarrying.
Holy shit, I thought, what kind of cretins don’t test women before pumping them with drugs? Disorderly feckin’ ovaries? It was over.
No more blank unfamiliarity with our file, our befuddled doctor asking us if we’d ‘ever done a Microflare?’ after we had just failed one with him.
No more bewildering contradictions about protocols.
No more misinformation, the first clinic telling us that AMH could fall to zero in a few months, the second that it had probably increased after my laparoscopy. One doctor telling me that IVF bypasses endo completely, the second confirming it lowered success but ‘we do not know how much’.
They continually prevaricated when asked about chances of success, until I wore them down.
We wanted to be done with IVF forever. It seemed that for poor responders, the drugs mostly compromised the processes they were supposed to assist, and it was all so ludicrously inexact.
My questions are:
If I knew it at the start,
and my husband knew it,
and the literature knew it,
why would neither clinic discuss the fact I was likely to respond very badly?
Why was high-dose, last-ditch IVF the only option on offer, and counselling never, ever – not once – mentioned as an alternative?
‘It’s all about priorities…. baby up here….cancer down there….’
Cant believe somebody actually said that. Is this the madness of pursuing a baby at all cost..to sacrifice everything – money, mental health, relationship and even your own physical health..for a 10% chance of conceiving. Is it all mercenary ? Its deeply troubling thats for sure.
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Appalling stuff, I just wouldn’t consider it
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This sounds like a nightmare. I cannot believe these doctors are even allowed to practice medicine! So sorry you had to deal with this!
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Thanks Elaine, they were terrible but it made leaving the clinics much easier!
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Different country, but your experience sounds eerily similar to ours, with the exception that we didn’t end up choosing the treatment route. One thing that still sticks out to me is how nobody ever even bothered to pause for a second and ask us how we were feeling about everything.
I just can’t believe that a doctor actually said “‘It’s all about priorities…. baby up here….cancer down there….’” Makes me wants to punch him in the throat and/or tell him to go f*** himself.
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I completely agree with you that real success rate information should be provided to prospective parents right at the start!! What an awful experience for you. I’m so sorry for what you’ve had to go through. I was fortunate in some ways with our doctors. I’m also 38 and have severe endo. We saw two fertility docs and two gynos. Ultimately, they said our chance of success on our own was miniscule and our chance with ivf would likely be single digits (with my eggs). We’re not pursuing that and will find other ways to have a family. Donor eggs had much better success rates as did embryo adoption so there may be other options out there for us ladies with uncooperative ovaries. Mine are terrible. Sending you lots of care and support! 💚
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Hi snowdroplets thanks for your lovely comment. Your doctors sound a lot more honest: mine just refused ever to go into single digits until I beat them into submission. I was exasperated because I just think it’s so much more positive and healthy to find an alternative way instead of flogging a dead horse. Success rates with DE etc can go up to 70% I’ve read. Loads of luck to you xx
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All I can say is Jesus Christ! I’d love to sit down and compare notes with a bunch of people about all the fertility clinics in Ireland. If we discovered they were all a bunch of amateur Cowboys I wouldn’t be in the least bit surprised. Between four people, myself included, who have attended clinics in Dublin I couldn’t recommend any of them based on the stories I’ve heard.
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I think they are completely unregulated, it was a shocking experience.
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My RE admitted my chances were likely between 5 & 10%. But he was maddeningly hot on my chances one visit & cold the next. Drove me nuts. I just never called back when I was supposed to start my next cycle, and nobody ever followed up with me, let alone suggested counselling. I am sure there are good REs & clinics out there, but also a lot of quacks and places more interested than making money than babies. Priorites, indeed…!!!
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I think it’s dire that they don’t follow up, just drop you like a hot potato; surreal almost after all the ‘intimate’ appointments you have…
We didn’t really officially leave or’finish’, but not once did they call to see where we’d gone or explain how the pregnancy had happened: you just don’t exist any more.
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That was awful treatment by the doctors! My German doctor is a bit more direct about the negative odds which is good I guess. When we were discussing IVF with him at our consultation I think he quoted me around 28% but that was based on my age mainly. When I was just about to start IVF after he had my test results I asked again about my odds and he wouldn’t tell me, just said he would need to see the quality of my eggs to decide. After two failed rounds, he won’t tell me my odds of the next round working, just suggests we try and it might work. I am a poor responder too btw, it sucks… And with cancer in my family I also worry about how the hormones are affecting me and how many rounds I would go through possibly putting my health at risk.
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Hi Dubliner. I think they always have a good idea of the odds but don’t like to say… I think it speaks volumes that one of the most aggressive IVF clinics in Dublin – Sims IVF – refuses to put live birth rates on its website: effectively, they are fudging / obfuscating from the get-go.
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I am so sorry you had this experience. IVF was the hardest thing I have ever done and I still haven’t recovered from the messing with my hormones. Maybe I never will. There is so much bad information and poor care out there. I don’t know how the industry can be more regulated but it must happen.
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Thanks Katy yes it’s a pretty awful experience… I do still worry about the hormonal effect and the fallout from being nuked with high doses…sorry to hear you had to go through it too
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