Still awesome, and not bored

sentinel currawongs

Ok, maybe just a teeny bit bored.

Right now, I’m on a work trip that is proving to be fairly dull. This has resulted in me not knowing what to do with myself for a short period of time and that prompted me to update this blog. For this I consider myself quite fortunate. That is, the fact that my life is so full that i haven’t really been bored in the past nine months.

So this is a message to any other women out there with broken ovaries, don’t dwell on your misfortune but do fill your life with anything that excites you and makes you feel alive. That might be something as simple as taking your camera on a local walk and capturing some local beauty (in my case a couple of currawongs on an old dead tree). Or it might be elaborate cake decoration, or hunting down the best bakery to eat the most elaborate cakes, or extracting beetroot juice to make hipster yet lurid frosting, etc etc. Mmm cake.

Of course this is good advice for anyone. Whenever you can, remember to fit enjoyable stuff into life. Isn’t it odd how we sometimes need to be reminded of that? Of course people raising small children (or equally, looking after quite old people) have other responsibilities and can’t always focus on their own joy. And it’s trite to say to a woman with ovarian insufficiency “don’t dwell too much on what is missing from your life, but focus on your freedom” because i know it is not that simple. What i can tell you is that this perspective IS achievable after a more or less arduous journey of self exploration. So my boredom today arises from being stuck in a hotel room with torrential rain outside with most of my pet projects back at home waiting for me. I might be bored right now but not for long because the interesting life i am forging is waiting for me and I’m itching to get back to it 🙂

 

P.s. in terms of any ovarian activity I’ll note that my body must have a sense of humour as the only menstruation events i have had this year seem to have coincided with camping and less than fully available toilet facilities. Haha. Not to worry, my little silicon cup still does a stellar job.

Quick post

I haven’t had time to post this week! A busy work week, and physically exhausted after bike commuting in the hot weather of the extended summer we’re having. But summer is officially over here, and the days are noticeably shorter. As per usual, we haven’t spent as much time in the great outdoors as we would have liked to this summer. But it’s a long weekend, so we’re packing up the car this morning and camping overnight somewhere. I’ll take the camera so should have some nice shots of the Aussie bush to share afterwards.

Appreciating what you have

My last blog post was about mood and wondering if/how much hormone fluctuations play into that. When I’m ‘down’ and also frustrated with my seeming lack of resilience it’s easy to get a little desperate and cling to notions with possible solutions, i.e. perhaps taking a hormone pill would ‘even me out’ and I’d be all the happier for it. However, I don’t think my wonky hormone levels have all that much to do with it. This week I’ve been bright and sunny compared to a gloomier week last week, and as a result nothing much has bothered me. I haven’t been irritable, or morose, impatient or any of the things I’d rather not be. And there are no signs of oestrogen production to account for this, I’m still in an extended interval between menstruation, just as I was last week. So what changed? My outlook. I improved the way I look at and react to the world with a little bit of self-talk, pondering and a large serving of help from my lovely husband.

The best part of my lifted mood is being able to enjoy all of the ‘little things’ in life more, and that’s something that I DO want to focus on. After all, taking note of all the little delightful things happening around you in turn leads to a lifted mood. It’s a good type of spiral rather than the vicious kind that can drag you down. And if you’re calm and happy you’re less likely to be irritated by tiny setbacks.

My morning routine at the moment is to take a lazy 15 min (to half hour…) to wake up with a cup of tea made for me by my husband (yes there are perks to not having kids!). This morning I had none of my usual black(ceylon) tea. If my emotional resilience was low something that minor might have annoyed me but when my husband pointed out that I had jasmine tea at the back of the cupboard I was happy to try that, to see if I would still get the pleasant start to the day that I was looking for. It turns out jasmine tea after a hot summer night is even more refreshing than black tea with milk, I’d just never considered it before.

After the tea, a short run and watering the garden it was time for breakfast and my initial thought again was ‘oh, we’re kind of out’. We didn’t have any bread for toast, we’d used up the last batch of homemade muesli/granola, we had some yoghurt but no fruit to make it interesting. After a quick look around the kitchen I came up with a satisfying, albeit unusual breakfast. I’d bought too many walnuts, so crumbled a handful of those into my yoghurt for texture/protein/flavour and then reached far into the fridge for a jar of jam that has literally been back there for more than a year. It’s gorgeous jam, from our favourite local producer, but a little strongly flavoured with cardamom and therefore doesn’t suit being slathered all over toast (what else do you do with jam?) so this last tablespoon or so has been languishing in the back of the fridge waiting for an alternative use. A modest amount swirled through the yoghurt and walnuts was lovely.

The tea and my breakfast concoction both reminded me that life is good, as long as you’re open to seeing it. It happens too often that we get stuck in old habits, that our houses become crammed with goods that we don’t even use and in my case, I purchase lovely, high-quality consumable goods to bring a little joy into my life but then forget to fully consume them! I guess what I’m trying to say is that this post is about gratitude. I’m grateful for my good mood that enables me to try new things, to appreciate the variety of experiences that are open to me, rather than dwell on anything that isn’t working/immediately available. I’m grateful for the good things that I have around me right now and grateful that I don’t feel the need to consume a whole heap more. I’ve had similar feelings when I’ve put a pile of clothes away due to underuse, then I forget I have them and I have a few temporary ‘I have nothing to wear!!’ frustrating moments before I find the pile again and usually surprise myself with “hey, this is good stuff!”.

Tea and jam and some old pants might not seem like much but it’s actually plenty. I can get in a funk about not having a baby of my own to coo over or not having a highly paid job (and therefore money to splash on luxuries whenever the whim takes me) but at those times I tend to forget that I love my excess time and all of the ways I can spend it. One of those ways is trying to live a little more sustainably each day. I’m going to enjoy the last spoonful of jam, then use the pretty jar to store something useful in, and eventually recycle it and I’ll be having a splendid time the whole while. Another aspect of my calm life (without children or an overly demanding job) that leads to happiness and enjoyment is that I can take a little time to ‘smell the roses’, in essence I can be a little more childlike myself. Yesterday I went into work a little earlier than usual so I was able to appreciate some of the rarer/shyer local birds in the tall trees of the car park before other people scared them away. I was able to spend a while standing and watching the birds, in pure enjoyment of them without any of life’s little annoyances weighing on me and something like that is quite precious.

Feelings about assisted reproduction

My posts are not normally written in ‘real-time’ but last Monday I wrote down what I was feeling at that moment:

Today, right now, all I’m feeling is defeatist. I can’t be bothered, I’m over it. I think I see now why other infertile women live in seemingly endless hope, because you have to have something to keep you going. I’m trying to be pragmatic about the whole thing but it’s not enough. I would like to have children but I don’t want to have to put that much effort into it. Is that a terrible thing to say? I can imagine the responses I would get if I actually said this out loud to someone. “The decision to have children should not be taken lightly, so it should always involve mental/emotional effort”, “Once you have children they are going to be a whole lot more hassle than organising these medical appointments, so you should get used to it”, “having children is the best thing ever, all of this will be worth it”. But I just can’t get over the fact that conception for us is just that much more difficult and a financial and emotional strain.

I’ve got the appointment later this week for a second opinion. I start my new job tomorrow, so today is the perfect opportunity for me to write down carefully worded, precise, succinct questions for the doctor so that we can get maximum value out of our $250; 30 minute appointment. It’s now 5 pm and I haven’t done that yet. There have also been a few admin hurdles to jump through (referral letter not quite right, previous clinic won’t release my results), which might cost me money and time. No biggie right? Especially if you consider that all of this is supposed to lead to our firstborn.

Right now though I’m fuming, frustrated and despondent about the fact that it’s not easy. These feelings are justified somewhat by the knowledge that all of this might not result in our firstborn. The chances of success are not great (according to Seifer et al. we only have about a 50/50 chance of obtaining an embryo for transfer after stimulating my ovaries and a less than 1/10 chance of an actual baby being born). And the last thing I want is to be chasing after something that is unlikely to happen. Maybe I don’t deal well with failure. Maybe I don’t deal well with hope.

Mostly what it boils down to is wanting to yell out “why do I have to deal with all this crap! When other people just had to have sex?!”. It seems the modern fairy tale these days is that we all try and build a life we like while delaying the more ‘grown-up’ activities, most of all the ultimate responsibility of parenting. We delay because we don’t feel ‘ready’, but then one by one we take the plunge and find it’s wonderful, really. If it was up to me I’d be happy to delay a bit longer, but instead I’m being told that I probably should have done it yesterday and now there are a bunch of forms to fill out and fines to pay. Ugh. A large part of me would like to throw up my hands and just leave it all to ‘the will of the gods’ (if only I was religious). There are times when I think “it’ll only be a few short years before I’m 40 and then I can give up all hope”, and this with some relief. But then there is the hope that I do feel, the pregnancy tests that I take ‘just in case’ and I guess it would be silly to not put a little effort in. I really shouldn’t be concerned with the money, we can throw a little at this issue (even if I would sometimes prefer to give any extra to charity!). The administration/legal issues regarding medical records really do make me angry and rightfully so, this stuff should be easier. People with more serious diseases have to deal with this bureaucratic mess all the time, and I feel for them.

***

Now it’s a week later (after quite a busy one, hence the lack of blogging). We’ve had the appointment, and obtained our second opinion. I’ll write again soon to share how I feel about all of that, which I’m still processing to be honest.

P.S. I generally try to keep this blog upbeat, because life is marvellous, infertility notwithstanding. Writing my feelings down has always been therapeutic for me, and I felt a whole lot better after writing the above paragraphs last week. At first I wasn’t sure if I was going to share, but if this brings comfort to another infertile woman/couple then that’s worthwhile. This postscript is to reiterate that the last thing I want is anyone’s sympathy.

desert_flower
I could say something cheesy about blooms in a desert… but really this is just a random photo

Endometriosis and Anti-Mullerian Hormone levels

I’ve mentioned in a previous post that I have wondered in the past if I might have endometriosis. Endometriosis seems like a really tricky disease in that many of the symptoms can be vague (bloating, fatigue) and it can be present even when there are no symptoms at all. The most common symptom is period pain but we are told (by doctors and everyone else) that period pain is normal and just part of being a (reproductive) woman. Lately when I’ve had a period (irregularly) the pain that has come along with them has been stronger and stronger. Last time I was kept awake at night because I couldn’t sleep through the pain. That’s the first time that has happened. Another reason I have dismissed this pain in the past is that I know a certain drug works like magic on the pain (I didn’t have any naprogesic last time, but I’ve now stocked up for the next one!). So there has never been a reason to ask a doctor about endometriosis, because if I do have it, it doesn’t seem to affect me too much. But perhaps it has? Is it possible that endometriosis has engulfed my ovaries to such an extent that they can’t release any eggs? I really don’t know if that is a possibility but last week a new hint of evidence in this direction was published (Nieweglowska et al. 2015).

First of all, I love a study that publishes the raw data! Figure 2 in Nieweglowska et al. shows the AMH levels of all of the women in their study, plotted against the women’s ages. The women with ‘low functional ovarian reserve’, that is, low AMH levels for their age, all seem to have endometriosis. And the women with lowest AMH levels have endometriosis growing/present on both ovaries (bilateral ovarian endometriomas, BOE). So maybe these women are like me? There are other similarities too, half of the women with BOE had pain-free periods and most of them did not have heavy periods (mine are light/normal). So, while I do not know if it is a contributing factor in my subfertility it is certainly possible that I do have endometriosis.

Another factor that makes me wonder is my small uterine cervix. Before I had my anti-mullerian hormone tested I went for a HSG test, a hysterosalpingogram. This is the test where they squirt dye up through your cervix and into your uterus. The idea is it flows through your fallopian tubes and this is all watched via x-ray. If the dye doesn’t flow all the way through then perhaps your tubes are blocked or some other such problem that may be preventing conception.

I went in for a hsg, and paid the 400-odd dollars for the procedure, but I didn’t find out anything about the state of my tubes. The doctor couldn’t inject the die into my uterus. I had been warned that this procedure can be painful, and it sure was. There were repeated attempts by the doctor/radio technician at finding my cervix, by sticking the sharp needle and various other implements in the region, but nothing opened up. The nurses in attendance (yup, there were at least 3 people peering up into my vagina looking for my cervix) were really nice about the whole thing saying things like ‘don’t worry, I’ve seen this before, it doesn’t mean you’re abnormal’. I was mostly peeved that I still had to pay out of pocket for the test even though I didn’t get to find out about my tubes. The fertility specialist had ordered this test and she seemed to think it was odd too. So she asked me to open my legs in her consulting rooms so she could have a look too. She had just as much trouble finding the cervix, and even asked me more than once if I was sure that I had periods (yes, there are no mistaking those!). Eventually she did find it, and similarly reassured me that it was just small because “I had never used it” (obviously I have used it to menstruate, she meant I hadn’t passed a skull through it).

Now, about a year later, I wonder just how abnormal my teeny cervix is? And if it means that my uterine lining finds another path? There are plenty of questions, so it’s apt that I have an appointment with another doctor soon for a second opinion. Fingers crossed for some answers!

ref: Nieweglowska, D., et al. 2015 ‘Age-related trends in anti-Mullerian hormone serum level in women with unilateral and bilateral ovarian endometriomas prior to surgery’. Reproductive Biology and Endocrinology 13:128

magnoliafairy
The magnolias are blooming but my ovaries aren’t and I’d love to know why not

For Paris, and for everywhere

eiffel

Last night we went out to a show, to see Stephen Fry on stage ‘telling tales’ (as the show was called). Admirably, Mr. Fry begun his show with a show of empathy for France, following the terrorist attacks in Paris this weekend. He said that it would not be right to proceed with an entertaining show without first acknowledging the atrocities and the outpouring of grief that is happening worldwide. I feel the same way about my blog, it would not be right for me to write about my dysfunctional reproductive system or my otherwise lovely life without mentioning the dark events going on in the world. Of course, dark and horrible things are always going on somewhere, and have been prevailing in Syria, especially, and elsewhere. But Mr Fry, being the intelligent and word-wise gentleman he is, acknowledged these events in a moving way while also sharing the sentiment of ‘life goes on’. To begin his show, he read the last two verses of a W.H. Auden poem ‘September 1, 1939’. I’d encourage anyone to read the poem, even if you don’t understand it’s full meaning, you can read it here. To me, the poem speaks of ‘being the good you want to see in the world’. That phrase may be a cliche but for good reason, because what else can we really do?

So i’ll keep living my lovely life, and aim not to step on anyone’s toes, and remember to be empathetic as often as possible, and help out when i can. And maybe if we all do that then we can avoid world war 3.

the two photos in this post were taken in Paris when we visited in May 2014. It's a wonderful city that means so much to so many and a symbol of the good life as well. We stayed in the 10th Arrondissement, 'Little Turkey' and it was wonderful
The photos in this post were taken in Paris when we visited in May 2014. It’s a wonderful city that means so much to so many and a symbol of the good life. We stayed in the 10th Arrondissement, ‘Little Turkey’ and it was wonderful

Slowly sustainable

I’ve been making a concerted effort to live more sustainably since i moved back to Australia in 2012. It’s been slow progress, with a new habit picked up every now and then, but i’m fine with that. If you try and change too many things at once, it’s easier to give it all up. At least that’s how it is with me.

Since i’ve not been working, my life is especially slower than ever. I had high anxiety last year, and becoming time-rich has been the best medicine for that. Especially because it means i can work on my sustainability goals in a relaxed manner, trying things out without the worry of ‘wasting my time’. Even if you could magically change all your habits overnight, you’d need extra time because most of the ‘sustainable actions’ that i do, replace modern conveniences. It’s a bargain that works for me personally, not only because i have the time but because i enjoy the activities and can see benefits that make up for the use of my time.

An example is homemade pizza dough. We used to get pizza delivered once a week, sometimes twice if we’d been working hard or were just worn out (and we both love pizza). I had made pizza dough before as a novel activity, but now it’s a regular occurrence. It’s a lot less spontaneous than delivered pizza, and requires energy from me, but it’s significantly cheaper, a good workout for the hands/arms, and is simply more delicious pizza.

I think i’ve said it before but it was never my dream to be a housewife. I do not particularly like baking and i’m not concerned with having the most pinterest worthy house. My science career didn’t pan out. I tried a more conventional, 9-5 type job but it drove me crazy. Most of the job seemed so pointless, but it was still stressful (time-pressures). I found myself working to earn money, so that i could buy things that i didn’t really want anyway. And a lot of that money went onto conveniences, oftentimes ones that saved us money but weren’t all that pleasurable. For example, buying lunch from a food court, spending $10-$15 for food that was ‘OK’, when i knew i could cook something healthier and oftentimes tastier for less than half that price.

Don’t get me wrong, i would still like to be employed and earning money (to pay off the mortgage faster, travel, and maybe even throw some at an IVF attempt). But at the moment i’m struggling to think of something worth pursuing that is more ‘helpful’ than me just running a nice, sustainable household.

I do still question my little experiments in sustainability. There are plenty of times where i wonder if what i’m attempting has any impact or merit.

Yesterday i had to go pick up my bucket full of vegie scraps. It was at my friend’s house, 20 min drive away, or 45 min bike ride away. So i rode. I’d almost reached the destination, and even got over the challenging hill when i started thinking “This is nuts, why i am putting in all this effort to pick up a small amount of waste?”. In my unfit state it was a bit of work, and not the nicest conditions (the sun was shining but my toes were still cold even in warm socks). But i remembered that some people commute this distance on a bike every day (!). And then i got there, and the little bucket was waiting for me, and it fit perfectly in my bike pannier, and i felt accomplished 🙂

IMG-20150701-WA0003

Introductory

Hi. I’m Peggy and this is my blog.

Expect plenty of talk about living sustainably, enjoying the small things, pondering the big things, avoiding negativity but embracing evidence and science. Oh and i’ll throw in a few jokes here and there.

My first few entries will be about dealing with infertility because that is something which has been heavily on my mind since i found out my ovaries are not working. I’ve known for 9 months (ha!) and my first thought was “right, let’s look at the actual data and see what can be done”. So i delved into the scientific literature and proceeded to do lots of reading around ovarian function. From the start i aimed to condense what i learnt** into a blog post that was worthy of sharing, but i shouldn’t have been surprised that it has taken me longer than i had imagined.

I have primary ovarian insufficiency (POI), also known as primary ovarian failure (POF) or diminished ovarian reserve (DOR). And choosing a name for this condition is not the only confusing aspect. But even more notable than following the confusing and contradictory science, are the interfering emotional states that have at times paralysed me or at least distracted me. I am trained as a scientist, so i have experience in reviewing scientific literature and distilling notable points therefrom. But this is the first time i’ve attempted doing that in regards to my own ‘disease’. Infertility is a difficult issue in so many ways, but at least it doesn’t come with a death sentence for yourself, only for potential offspring. This journey of discovery has given me some insight into the rollercoaster of hopes and fears that someone with a more debilitating diagnosis must endure. The issue of ‘hope’ deserves a whole blog entry on its own.

Suffice to say, hope, and no small measure of desperation can easily drive a patient into looking for ‘cures’ and there are bucket loads of pseudoscientific ‘treatments’ or advice. In any area of science there are more unknowns than knowns, so it’s always going to be tempting to think “well, they just don’t know what is going on here, so there is a chance that X will help me”. But i really, really dislike pseudoscience. In the ‘research stage’ of writing this, i was glad to see some backlash in social media and the traditional press against ‘wellness bloggers’ who profit off buoying hopes of others (whether they hope to lose weight, ease chronic disease or more). It’s dangerous territory, that can easily invite vitriol and i aim to distance myself from any accusations that i am providing unfounded advice. It’s actually funny that i feel i have to say this upfront, considering that at the moment i don’t have much advice for myself! But, i’m going to try and figure it out, and the aim of making this public is not to let people know ‘what worked for me’. I’m sure most of it will actually be along the lines of “crap, this is hugely confusing, and i keep going from points of hope or moments of clarity to getting depressed about it all the very next day or angry with myself that i’m even thinking about it too much!”.

And that, after all, is a good reason to write all this down and share it. Lighten the load 🙂

I apologise for the lack of jokes in this introductory entry, here is an artists impression of my ovaries:

sultanas
not juicy and fruitful

*Not my real name

**This is correct English, the American English translation is: learned.