Progress

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Today was a huge day in Australian politics. After a brutal, unnecessary and non-binding postal survey, and a round of debate and absurdly long delays and procrastination around amendments, same-sex marriage finally became law. This is such a significant event for so many reasons – not least of which is that it means so many people I love and care deeply about can now marry the people they love, and feel free from judgement. I am so glad this day has come, for them and for the many LGBTIQ kids now and yet to come.

For me personally it was also a significant day, for another much less publicised reason. Today Federal Health Minister Greg Hunt announced that the government would great a national action plan for endometriosis, which aims to improve the lives of women suffering the condition, to boost research, and to raise awareness in the wider community. The announcement included a promise of $160,000 in immediate funding for Professor Grant Montgomery of the University of Queensland’s Institute for Molecular Bioscience, who is currently researching the genetic component of the condition, and that the Jean Hailes Foundation will make endometriosis the focus of the 2018 Women’s Health Week.

According to the UQ website, Prof Montgomery said he hoped this announcement marked the start of a new era for women with endometriosis.

“There is a critical need for more research into endometriosis,” Professor Montgomery said. “The causes of this debilitating condition are poorly understood and it has been a difficult disease to study. However, we have made excellent progress in the last five years and now is the time to capitalise on this success.

“The combination of advances in genomics, large international genetic studies, better model systems, and ability to analyse large datasets of patient information all provide the catalyst needed to accelerate research progress into endometriosis if backed by appropriate funding.”

While I’m thrilled to see endo being recognised and supported at a federal level, I’m disappointed by a few things. $160,000 is just a drop in the ocean of what’s needed to truly tackle this condition. in 2016, the National Health and Medical Research Council (NHMRC) allocated more than $14.7 million to asthma research and $64.1 million to diabetes research – yet endometriosis research received just $837,433 (via abc.net.au). Adding $160,000 to the kitty to round it up to an even million is rather pitiful really.

And while Prof Montgomery’s work is certainly deserving of funding, I would be very curious to know how he was chosen as the recipient. According to data available on the NHMRC website, Professor Montgomery received seven grants and/or fellowships worth more than $4.8 million from the NHMRC between 2004 and 2014. Are he and his work the only worthy recipients of funding? Or is it just that there are so few funding applications for endometriosis research (in many years, only one grant was awarded), that the government has to choose someone they are well-known/awarded?

Of the 13 researchers and 29 endometriosis-related projects awarded NHMRC funding between 2000 and 2016, Professor Montgomery is one of four researchers to be awarded multiple times –  the others are Associate Professor Caroline Gargett of Monash University (6 grants/fellowships totalling $3.6 million), Professor Peter Rogers of The University of Melbourne (4 grants/fellowships totalling $3.25 million) and Associate Professor Dale Nyhalt of Queensland University (3 grants/fellowships totalling $1.2 million). I certainly don’t begrudge any of these brilliant scientists the funding that they’re receiving – they undoubtedly need more – but funding will inevitably go to those with the time and resources to apply for grants, and the prestige of being known in their field. What does this mean for those who are time and/or resource poor and still making their way in their field of research? What’s the effect of one already well-awarded researcher being awarded yet more funding at the drop of a hat?

But bigger than these issues, is the fact that such a monumental recognition of this condition was so poorly covered in the media. Only Guardian Australian and Women’s Health Australia covered the announcement to date, as far as I can see. The Jean Hailes Foundation hasn’t issued a Media Release about the announcement as yet. The focus of the day has been on the final debate and ultimate success of the same-sex marriage legislation – and rightly so. But hopefully the government’s national action plan will ultimately bring endometriosis the attention and support it so desperately needs. Let’s hope they’re more than just talk on this one.

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Popping back up: next steps & new ideas

The stare by Konsta Punkka on 500px.com

It’s many many months now since I wrote here. Busy with other things, hoping for other outcomes. That’s not to say the time spent has been unhappy – nay, we’ve been on holidays, enjoyed art, music, and celebrations with family and friends. And we have more of all that ahead. Much joy. But yes, of course, moments of sadness.

After a few rounds of Clomid, we moved onto IUI – we’ve just finished our second cycle, with no luck. We’ll have a review session with our doctor at the end of this month, and we’re anticipating the next step will be IVF. I think we need to just get those dang gametes in a petri dish so we can work out why they don’t wanna tango! But with Christmas coming up, and the fact that our private health insurance won’t contribute to the cost of IVF until the end of March (thank you very much, pre-existing condition), we won’t start anything until at least April next year. And I’m actually totally fine with that. Of course, I’d love the idea of taking that big leap in odds (going from about 11% with IUI to around 30% with IVF) as soon as possible, but I’m actually glad for the break, and looking forward to just enjoying my birthday and the festive season with a few glasses of wine, then starting the new year fresh.

While I hope that IVF, or IVF with ICSI will be the answer for us, I know that they might not be. We’re open to the idea of adoption, but haven’t started seriously investigating it just yet. That’s another thing we’ll explore in the New Year. But I’ve been following a couple of blogs (here and here) where families have shared their adoption journeys, and it’s taught me a lot, and opened my eyes and heart to the possibilities. Both these blogs follow the process of adopting from China, which is interesting in and of itself. I’ve looked at a little information about both local and intercountry adoption in Australia, and I’m not sure which we’d pursue if we end up taking that path. I guess we’ll know more once we attend an info session next year.

In the meantime, I’m planning to make the next few months as bright and merry as possible. With the weather getting warmer it’s much easier to be up and about, and I now only work 4 days a week which is bliss! I’m planning to explore more, do more craft, and get to work on a book about the infertility journey. I’m aiming to keep track of all the adventures here – will be trying to post more often!

Image by my favourite wildlife photographer at the moment, Konsta Punkka

Weekend escape: Castlemaine

Hubby and I recently had a weekend away in Castlemaine. We were heading up there to see our favourite local band, Husky, perform at the old Theatre Royal, and thought we might as well make a weekend of it. Hubby found The Midland Hotel, and though it cost a little more than we might normally spend on accommodation in a town that’s really within driving distance of home, we thought we’d splurge a little. This is part of the reason why.

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The guest lounge at the Midland Hotel, Castlemaine

The Midland is a stunning heritage-listed art deco building, just across the road from Castlemaine railway station (which makes it super handy if you’ve decided to catch the V-Line train up, as we did). It’s run by husband and wife team Mauro and Ann, who say they bought the building for a steal in the early 80’s. Apparently the asking price back then was not much different to the cost of a house, but they’d be getting an entire heritage building – and fully furnished, no less. Despite the fact that they were living and working in Canberra at the time, once they’d seen the building they couldn’t get it out of their heads. As Mauro told us over a glass of wine on the Saturday night, “We had the eight-hour drive back to Canberra to think about it, and imagine all the things we could do with it.” Neither of them had ever run a hotel or B&B before: Mauro was a public servant, and Ann was a nurse. I love the fact that they didn’t let this stop them – they made an offer, it was accepted, and suddenly they owned the place.

Over the last 30 years they’ve gradually restored various parts of the building with love and care – and they’ve also let their personality shine through. The building and the hosts are warm, inviting and charming.

The Midland is not just rooms and breakfast area – it has a gorgeous guest lounge (pictured above), plus the Maurocco Bar – which has a jazz night once a month – and a couple of small boutique shops to poke your head in. The deco influence is everywhere – from the wall colours to the paintings, from the light fixtures featuring naked golden ladies to the geometric sculptures of sleek black cats resting on mantelpieces above grand open fireplaces. Journalist for The Age, Andrew Stephens, who stayed at The Midland in 2008, captured the ambience brilliantly when he likened it to “a favourite aunt’s rambly old mansion”, and said:

“Mauro led us through the fabulous deco lobby, with handsome armchairs in front of a fireplace… past the grand staircase with its magnificent, streamlined balustrade, straight out of a 1930s ocean liner, and into the “lounge”, which more resembles a ballroom.”

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The Maurocco Bar at The Midland Hotel, Castlemaine

According to the website, the building was erected in 1879 and was initially known as the Castlemaine Coffee Club, until extensive renovations were done in the 1930s and it became The Midland Private Hotel. Back then, the hotel had it’s own livery stable where you could hire a horse or horse and carriage to take you to other regional towns including Chewton, Campbells Creek and Newstead.

It was owned by a Mr and Mrs Bailie until the 1970s, and apparently at one point the hotel became so popular that the young Bailie boys were forced to give up their own bedroom and sleep in tents in the back yard!

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If you’re up in or near Castlemaine and need a place to stay, I highly recommend looking in at the Midland. Even if you can’t get a room, you can always relax a while in the Maurocco bar – it has plenty of delicious local wines, a cocktail list and a selection of treats to enjoy. We were there on a chilly winter’s evening and sitting by the large open fire with a fine glass of local red was rather delightful.

We couldn’t help marvelling at both the building, and the boldness that pulled Mauro and Ann into buying it more than 30 years ago. I’d like to think that I’d have enough courage to buy a rambling old hotel, renovate it and run it with no experience at either, and make a go of it for such a long time – but I’m not sure. It sounds like an amazing adventure, but I can’t really imagine myself actually signing up for something like that! Could you?

A grand adventure?

It occurred to me the other day, as I contemplated the passing of another unsuccessful cycle, and the beginning of a new assisted one, that maybe I am approaching this whole infertility thing all wrong.

What if, rather than seeing it as an abysmal “plague on both your houses”; a terrible tragedy to be endured, we could somehow find a way to see it as a grand adventure? An epic in the great literary sense? By that I mean of a sort of Potter-esque variety, where courage, magic, knowledge and love can defeat darkness – let’s leave Frodo trudging through the fearsome wasteland of Mordor aside, ok?

Could that be possible? The idea that life can continue fairly much as normal day to day, and when occasionally there are battles to be fought there are always friends at hand and magic to guide us? And through it all we are learning and growing (while occasionally making and taking potions).

As someone who values science, creativity and feats of human endeavour, there is indeed a certain amount to marvel at when you think of all that’s possible with assisted reproductive technologies today. Of course, we haven’t yet truly mastered the art of conceiving healthy babies 100% of the time, but when I think back to all the women through time who, like me, had no answers as to why they couldn’t become pregnant, but unlike me also had no further options or assistance available to them, I’m immensely grateful for the chances and options we do have. I am lucky to live in a time and place where am am able to make choices about my body, and just enough financial freedom to act upon them. There’s one miracle right there, if we’re counting.

It may not be possible to think of this as a grand adventure for very long – I doubt Harry thought of his lot that way while he was living through it – but, like anything, I can only take it a day at a time. And maybe one day we’ll look back and realise what an epic this was.

Hold the vision, trust the process

Happy New Year! Hard to believe we’re almost in February already…

I’ve been trying to take it easy over the last few months, and not put to much emphasis on what is and what may (or may not) be. As 2016 came to a close, it was a little difficult to accept that this would, once again, not be our year to become parents. Of course, you know by April each year whether you’re going to have the chance to delivery a baby and become a mum that year, or not, but for the rest of the year there is at least the hope of starting that journey, of falling pregnant and preparing for what the next year will bring.

After the first round of Clomid with trigger injection was unsuccessful, we repeated the process again the next cycle. Things looked good at the day 12 scan, with two follicles maturing nicely, but this time I had to wait a day to do the trigger injection – which meant doing it myself, at home. Giving myself a stern talking to and several firm flicks in the abdomen to dull the pain of the impending needle seemed to do the trick – again, it wasn’t really so bad in the end. Mixing the ingredients without spilling anything was actually the hardest part!

That cycle we also added progesterone to the mix – one dose each day for the second half of my cycle. Alas, no luck again. The progesterone threw out my next cycle a bit, but we’d decided to have a medicine-free December anyway, and just enjoy Christmas and the family time without having to worry about medication and trying to organise a scan around the holidays. I then decided to give my body another month to find its feet, so January has been med-free as well. Only one chiropractic session and one acupuncture treatment – and both practitioners said I was doing well. My acupuncturist actually said my body is “humming”. So obviously the slow, gentle time-out from it all has been worth it.

Things always feel lighter and easier at the start of the new year though – anything seems possible; all is fresh and new. I’m mindful that this feeling may not last on its own – it will need to be cultivated and supported through the many adventures and misadventures ahead. But I’ve been engaging with a few new resources the past couple of months, and trying to stay tuned in to where my mind and body are at, and support them by making gentle tweaks to my diet, exercise and day-to-day schedule as needed. I’ve also been trying to make time for the creative things I enjoy – knitting or crochet, playing the piano, doing jigsaws and such. Hopefully all these things will help keep me centred and grounded for the next stage of the process, which I know may be IVF, and getting ourselves acquainted with the adoption process.

As I said to my sister recently, IVF and adoption are never things you would plan for yourself, but I’ve come to accept that one or both of these may come up along our path, and I know that however it works out will be wonderful. I’m much more open to different possibilities than I was when we started on this journey almost two-and-a-half years ago, which is a marvel in itself. I know that whatever happens there will be things that are difficult to process, and things that will be physically difficult to bear, but we’ve already faced things like that before, and we figured it out – we’ll be ok. As my chiropractor once told me: Hold the vision, trust the process.

It ain’t all that bad


Day four of my first round of Clomid and happily I haven’t experienced any weird side effects, save for a couple of small bouts of nausea and a few tiny pains around my ovaries. But I am starting on a low dose, and it’s only been a couple of days – so it would perhaps be a little strange if I’d felt anything stronger.

It seems silly that this should be a relief; most people probably go into this sort of thing optimistically. I, to mangle the wit of Dennis Cometti, unfortunately tend to do the opposite and go in a bit misty-optically. Earlier this week, while enjoying the late-afternoon sun streaming through the waiting room windows at the acupuncturist, it occurred to me how much weight I’ve put on the moment of starting every kind intervention. Each new procedure or specialist has some how felt like another small failure of my femaleness. First I was upset at needing to see a doctor at all. Then a specialist. Then having tests – I felt ashamed to be sitting in the waiting room at Melbourne IVF before a simple blood test. Then surgery. Then having to go back to the specialist. Starting natural therapies – even though I genuinely enjoy and feel wonderful for having them. Then, starting the medication. Not to mention the start of every new period, and seeing friends or acquaintances fall pregnant or give birth during this time.

As each of these moments has arrived, I’ve felt another small failure. Even anticipating these moments I have felt shame and loss. Yet it occurred to me this week that I’ve been giving these moments far more significance than they deserve. By labelling them as “unnatural” and “intervention” I’ve made these tools “bad” and myself “broken” by association. Really, each of these is just a tiny addition or adjustment to my life, not some great cross to bear. There is much to be grateful for about modern medicine when you think about it. And yet I have chosen – subconsciously of course – to feel shame, a failure, less womanly. It’s interesting to think about how much of our identity as women (and even men) is wrapped up in our fertility, how society places such emphasis our ability and/or desire to reproduce. But that’s a topic for another day.

Right now I can focus on being more mindful of the attitudes I have towards this whole journey, and make conscious choices about the beliefs I hold within me. Those things are within my control.

Because ultimately, adding a tiny pill to my daily routine a couple of days each month ain’t all that bad.

On facing the hard truth

Three babies were born to family or friends this month; two on the same day – a second child for one, a third child for the other. My sister is now halfway through her second pregnancy. There is growth, birth, and life all around. To women of all ages, and situations. There is hope in this, or there ought to be.

On New Year’s Day this year, I swam in the sea before breakfast. I was alone, save for one dedicated swimmer doing freestyle farther out. The beach was deserted. My family, and everyone else on the island it seemed, was still asleep, or at least starting the day slowly. I bobbed in the water, soaking up the sunshine, feeling like I was washing the old year away. Letting go of a year of disappointment and starting fresh. Only hours before, while trying to glimpse the fireworks launching off the pier as the clock struck 12, my little sister embraced me and said “this year, this year is your year”. I hoped it was.

Ten months later, and I look back on that moment in the darkness, and the cleansing saltwater and sunshine of the next morning, with a mingled sense of grief and betrayal; of frustration and bemusement at my naivete. I thought it was as simple as letting go, of washing the old year away, and that hoping and believing could be enough. I know now that my body was fighting a vast web of inflammation, and that every attempt to conceive a new life was destined to fail before it even began. That even now, though the web and its tugging, dragging pain is gone, my body is still healing, reprogramming and striving for balance. That though I do my best to support it, I cannot control it.

It will take time, as much time as it takes. It won’t happen this year; it might not even happen next year. The days will come and go, like tide after tide – beyond my power and control. All I have is today, and this moment, and these choices. To take the medicine, to turn up to my appointments, to wait, to hope.

One in six couples are infertile – 16% of couples. 1% of births are the result assisted reproduction techniques such as IVF. The lady over the road had both her children through IVF; my sister was taking that route not so long ago. These roads are not so rare, these stories are not so uncommon. Everyone knows someone who has walked this path. Why then, does this feel like such an isolated journey? Why does it feel like such a loss, a failure, a betrayal of the deepest, most primal kind?

We have not even really begun, and yes, I know that there are women who have walked miles further than me on roads far more difficult than mine. I have no cause to feel this so intensely, not just yet. I have not faced such big losses, not yet. But I could. And it’s likely I will. Even with IVF, our chances of conceiving and carrying to term are only around 32%. Compare this to the average fertile couple, which has a 25% chance of falling pregnant every cycle without any assistance, and 60% of them will fall pregnant within a six months.

We began with such effortless optimism, such hope and excitement. Now, optimism and hope are things we have to consciously choose, and excitement will be put on the shelf and saved for later. We approach the process not with expectations, but intentions. We practice mindfulness. We strive for rationality, for acceptance, for that beautiful word: equanimity. These are all things I’ll be exploring in coming posts. How to be mindful, to cultivate intentions, to seek equanimity. Despite the sadness and dejection we do feel sometimes – which I’m sure is evident in everything I’ve written in this post – there is space for these ideas, and the stillness and groundedness they can bring. I know that, for us at least, and for others out there facing a similar path to us, we aren’t going to float through conception on a bubble or cloud – it is not likely to be light and effortless as we once dreamed. Somehow, I will find peace with that, and beauty in the journey – slow and plodding though it may be.