IVF patient advocacy

What is advocacy? Reflecting on this idea of advocacy, I've realised that it takes a huge amount of not just confidence, but energy to actually fight for the things that may in fact be the difference makers. That may be the difference between forever wondering "what if", or bringing home that most precious of priceless gifts; your baby.

And without knowledge of not just what you're asking for, but WHY, the likelihood that a medical team is going to dismiss your request is unfortunately very high.

If you say, "Someone else added this thing in their cycle...do you think I should too?"

That kind of question usually gets an instant dismissal from a fertility specialist with responses like:

"You don't have the same indication. You have no problem with fertilisation rates, so you don't need this. Or, you don't have PCOS, this is not relevant to you."

There's no point in getting frustrated about why medical professionals do this, because they do have very good reasons for why.

1. Patient safety and risk management comes first, and so unless it's something they are already aware of the studies on the particular thing you're asking for, there will be push back (unless you can share those studies and your reasoning. Most doctors are incredibly open when you're able to present a logical argument to them--although I appreciate that not all countries are the same here, there are some countries with very high power distance between patients and doctors where there is little room for collaboration).
2. Newer studies don't enter the sphere of general fertility medicine immediately. It can take up to ten years for research to filter through to general practice and protocols. Unfortunately that is a timeframe that none of us can afford to wait. This is why we need to bring new evidence based medicine findings to our medical team's attention.
3. Fertility doctors also have a certain sphere of personal experience. So if what you're asking for is something they're unfamiliar with, it's also a professional risk for them to take and they view it as a potential risk to your experience as their patient to do something that may not work.
4. Some doctors are incredibly sensitive to cost on behalf of their patients. If they think that saving $500 here or $1k there on an extra drug or procedure (especially if they don't personally believe there is enough evidence for its use) is the most important priority, then they'll instantly make that judgement call on your behalf. And it may be true for some, but it's not necessarily true for all. And in fact, if you can afford two cycles, but could get enough euploids in one cycle, removing the need for the second, then that ultimately saves you money anyway, not to mention the hormonal maelstrom and psychological milleiu that comes with every new cycle.

The good news is, there is a strong body of evidence for everything that I happened to include in my own protocol, and my goal is to really focus our energy on things that are evidence based in general (and not JUST on what I did in my own cycle, but on anything that improves euploidy from a scientific perspective).

That doesn't mean we have to wait until a meta analysis comes out before we try something that has some good initial studies behind it (ultimately each of you may have your own reference for the level of risk you're willing to take on newer treatments, which is perfectly valid).

But it means we DO look for add ons that have been studied multiple times, and I'd like to avoid centring discussion around things that have been proven beyond reasonable doubt in multiple studies to be ineffective (e.g. homeopathy), or have not had any studies conducted in an IVF context (e.g. carnivore diet).

So with all that said...what is advocacy in the context of IVF?

It is your ability to educate yourself on things that we cannot expect our doctors and their clinics to always be across yet, and to use both the physical and emotional resources from Better IVF and other locations to give you the confidence to communicate the evidence that may improve your own euploidy rates, and increase the likelihood of a live birth from IVF.

I'd love to learn from you all, what do you struggle most with when it comes to advocating for yourself with your medical team?