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  • Writer's pictureOana Gharbi

Infertility over 40 and Patient Advocacy

The thing about infertility is that it almost always comes as a shock because culturally and socially speaking we are never prepared for it.

As little girls we are being told we are going to grow up and start families, and have babies.

No mother ever prepares her teenager for the possibility of having to do IVF.

And I am not saying we should, because I believe we have to focus on the positive.

But it’s a fact that infertility comes as a shock with all the mixed feelings one may expect.

We feel sad, because we had completely other plans for ourselves

We feel hesitant because we are not used to not have control over what is happening to us

We feel helpless because we discover we don’t know anything about infertility and the more we want to catch up the less we feel we know

We feel singled out because everyone else around us gets pregnant and that’s even more true ever since we have been trying to conceive without success (actually that isn’t true, it’s just that we pay more attention to this kind of things)

We feel desperate, and it’s soooo easy to go down the rabbit hole spending our lives on Google trying to find solutions

We are lost, searching for THE clinic, THE doctor….

And eventually tired because infertility takes a toll and there is this huge risk that it takes over your life and your relationship.

Now the thing with infertility (being primary or secondary, I don’t make any difference) at 40, and over 40, is that on top of the aforementioned feelings, we also have the feeling that we are running out of time.

And this puts a whole lot of extra pressure on us.

It is scientifically proven that female fertility decreases with age and that egg quality decreases with age too.

Unfortunately, many fertility clinics are not helping.

Be it because they are concerned about their stats, or because they simply don’t want to bother with a difficult patient, some clinics simply refuse over 40 years old patients, pushing them to donor eggs solely based on age.

Or start them on standard IVF protocols that may work wonders for the standard younger patient, but may be counter productive for a patient with diminished ovarian reserve.

As a Patient Advocate and former infertility patient over 40 myself, I have learned one thing: we should not let infertility define us.

WE should try to get in control of the situation as much as we can, by educating ourselves, because even if it is a cliché, knowledge IS power.

Now obviously, learning the complicated ways of fertility treatments, what to look for and what questions to ask, takes years.

And you don’t have years.

That’s the role of a Patient Advocate/Fertility Coach: to empower you with knowledge, to help you identify your problem, dig into medical records and treatment plans, come up with the right questions to ask your doctors, especially the ones they don’t want asked!

Because there are so many things you don’t know, and what’s worse is that you don’t even know what you don’t know.

Getting yourself accompanied in the process is eventually going to help you save time: because a Patient Advocate does all the research for you and knows where to search and what to look for.

It is going to save you money too, by enabling you to make informed decisions and teaching you how to advocate for yourself so that you optimize your chances for a successful outcome.

I use a science based approach, I am very factual and I believe in studies and data.

I also believe that we are so much more than reproductive systems. We are complex human beings and fertility, while influenced by age, is seriously impacted by our daily choices.

Science says egg quality can be improved. You will find fertility doctors who agree with this, and others who don’t.

I am a strong believer in the “take advantage of the smallest chance there is of making things better” approach.

There is no magic wand, no one size fits it all.

But there are many things you could do to better your chances.

Weight loss is proven to positively impact chances of conception, therefore nutrition is important. So is exercise.

Supplements-there are so many out there, yet there are only a few who are proven to work. And if they might work, why not try to make the best of what you have?

Stress…now this is a good one. Trying to reduce the stress in order to get pregnant, when infertility per se is THE definition of stress…

Well yes, you can reduce the stress, by detaching yourself from things that actually worsen your discomfort and anxiety and leaving them in the hands of someone who can take a part of the burden off your shoulders.

That’s our mission as Patient Advocates. Because what happens when you don’t know what questions to ask? What happens when you don’t understand what the doctor tells you and you have doubts that the clinic is trying to sell the best option for themselves, not necessarily the best option for you?

You get stressed.

But these are things that Patient Advocates know how to do.

Actually, by empowering a Patient Advocate to accompany you on your journey, you get control over your situation, because you get access to information you had no idea was there in the first place.

And sure enough, many fertility clinics have Patient Advocates on their payrolls nowadays and that’s a good intention.

But you have to keep in mind that they are still employees, serving the employer’s interests.

If you want to make sure you will get access to the highly professional assistance you need, with no conflicts of interests, then the best help you can get will be from an independent, private patient advocate.

What pains me to no end is to see my clients feel like they can’t have any say in their fertility journey. The doctor makes the decisions, without even explaining the whys and the hows, and you have that feeling in your gut that there’s something missing, you can’t pinpoint it, because you’re not familiar with infertility related issues, but it’s there, the nagging feeling of “something is off”

And you would love to be able to give them a piece of your mind but you don’t even get to see the doctor, a nurse is his messenger and you are just a number.

And that is so wrong.

You are definitely not a doctor, and you may not know much about these things, but it is your body, and your money, and you have the right to know, to have an opinion, to choose.

I always make the shoes analogy for my clients.

Would you buy a pair of shoes off the internet, without knowing what size they are, just because they’re, say….red? Would you waste 200 dollars just like that? I know you wouldn’t. Why not? Because you feel you are in control and it’s your decision to make, what to do with your money.

So why would you throw away 10.000 dollars for a fertility treatment in which you have no say?

It happens. And it shouldn’t happen.

Clinics repeating the same protocol a second time, a third time, only to cancel the cycle or have it fail, expecting different results.

Patients timidly trying to suggest a change, because you know, people read these days, there are studies available, medical articles…

And medical staff dismissing them constantly.

That is not ok and this adds supplementary stress to an already stressful situation

And that’s why we are here: to help you understand, help you raise your voice, help you get control and get in charge of your infertility.

Do not let infertility define you, do not accept to go with the flow.

Read, ask questions, educate yourself, challenge your clinic, don’t hesitate to change doctors, read again, join a support group, find someone to work with and for you.

You can do it, and you will!

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