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?