The deadline and the decision - planning for parenthood with endometriosis

8:33 am on 24 April 2023

Weeks ago, I had no idea when my husband and I should try to have our first child. But now I know.

At the beginning, I imagined something would come along to debunk that doctor's claim. Or something definitive would intervene and deciding when to start trying for kids would become obvious.

Three years ago - just before I was diagnosed with endometriosis - a doctor urged me to start trying for children before I turn 30. The shock of a deadline turned my life plans upside down. Then Covid-19 scuppered our OE. Rampant house price inflation stalked our home buying hopes.

Only months ago, at 29, I was utterly unprepared for parenthood but knowing delay was fraught with risk.

I've now spoken with several experts and other women with endometriosis. We have many shared experiences that weave our stories together, but we also have a lot of differences in our personal circumstances, our age of diagnosis and severity of the condition. The stories have been bravely shared in The Deadline, an In Depth series which aims to speak clearly about the realities of endometriosis, especially the impact on planning for parenthood.

Everyone's experience is different

Age is one of the big challenges for all women looking to have children. Fertility starts to decline around 30, gradually at first, then more quickly after 35. It gets more complicated when you throw an endometriosis diagnosis into the mix.

About a third of women with endometriosis will struggle to fall pregnant, but that also means that many women don't.

I was diagnosed with a milder form of endometriosis than many other women, but even those with milder endometriosis can still suffer from infertility, while others with more severe endometriosis can still fall pregnant.

Like many aspects of this illness, there's still a lot of unknowns.

Finding a way forward

At Endometriosis New Zealand they have a phrase they like to use: 'Finding a way forward with hope and strength.' And with each person I've spoken to they've taught me to do just that.

From Ruby, I learnt I'm not alone in not feeling not ready for children and it's valid to have other goals first.

From Miriama, I learnt about the risks around fertility and endometriosis, but there is still hope for starting a family. She also reminded me that couples can work through those challenging times together.

Natasha taught me that I shouldn't let fear dictate when I have a child and to focus on the positives and what I can control.

And with Caitlin I learnt the importance of being your own advocate and that sometimes you need a second opinion, so I did just that and I visited my current GP to discuss my options head on.

RNZ journalist Charlie Dreaver Photo: RNZ / Cole Eastham-Farrelly

Not yet, but soon

Speaking to the doctor with the possibilities swirling around in my head it was fair to say I had a lot of questions.

But after a very long chat, I've got a plan in place.

I've come to the conclusion there's no point taking my Mirena out now and risk my symptoms getting worse when I'm not ready for children. And unlike some other forms of hormonal birth control, you can start trying for children very soon after you stop using it.

What I can control now is managing my pain symptoms, so my doctor put me in contact with a pelvic floor physio who I'll have my first appointment with next month.

A few people I interviewed told me how much of a difference this made, so I'm genuinely really looking forward to it.

My GP said she would not be advising anyone to wait until their mid-thirties to try for children, due to the risks.

And Dr Simon McDowell from Fertility Associates gave me some sage wisdom that you should be planning for your last child, not your first.

So, with my husband and I having two kids in mind, we are planning to start trying next year. We're hoping to cross off some of our other goals in the meantime.

If Covid has taught me anything it's to expect the unexpected, so if for some reason trying for children next year isn't be possible, we will start investigating egg freezing as a precaution.

If we do struggle to fall pregnant, I know that we will face that together and that we have given ourselves breathing room to seek help from specialists.

On our own terms

I am incredibly lucky that I was diagnosed early, which has bought me precious time to make these important decisions about my health, so that my partner and I can plan. It takes an average of eight years for a diagnosis of endometriosis, so for many women their options are much more limited. And what I have decided is best for me, may not be the best for someone else.

But I hope that we continue to improve diagnosis and treatment options, so that more of us have the ability to choose on our own terms.