Everything is awesome

I haven’t posted on this blog for three whole months now. Probably because I lost any sense of what this blog is FOR. Partly also because I have just been enjoying other aspects of my life.
One of the reasons that I started this blog in the first place was that I was a little lost, in relation to finding out my ovaries didn’t work, but also due to other life stuff. Back then I was yearning to hear a story similar to mine, of someone who had found out that they were subfertile/infertile and therefore apparently going to miss out on life’s biggest joys (according to some, or many) but also not completely heartbroken at the thought of not being a mother, but at the same time not really sure what her life was about, or going to be about. All of that is a lot to think about. There was more of course; worry that my lovely husband was hiding/suppressing disappointment about not being a parent, concerns about my general health and lifespan (if your ovaries stop pumping out oestrogens then all your other body systems go to rot, supposedly), and many other concerns and confusions and sometimes downright irrational thoughts that stopped me really enjoying life. Although I’ve since read many first hand accounts from sufferers of ovarian insufficiency, none of them articulated the mental place that I was in or the exact concerns that I wanted addressed. One of those was ‘if you find out that attempting parenthood will mean a significant amount of effort, money and emotional fortitude on you and your partners part, then does it make sense to forgo that life decision, and will you still make yourselves a life filled with meaning and pure joy and much more besides?’.

Rationally, I knew that the answer to that question was YES. But two years ago I really wanted to hear from someone who had lived through that question and demonstrated the happy ending. The happy ending that doesn’t end with ‘and then I got my miracle baby!’.

So, I think that I will keep adding to this blog every now and then. I no longer really need the blog for pondering the science behind ovarian insufficiency, or as an emotional or creative outlet. I have lived through tough times filled with doubts about my life but now I’m firmly on the other side of all that. I love my life, and I’m grateful for all of the pleasures and interests that I’m able to pursue, and yes! the benefits that come with being a child free couple. So, I’ll stop by and update this blog in case it can help anyone in a similar situation. Do I still hear of friend’s pregnancies and get a little twinge of jealousy? Yup, and I’m not ashamed to admit it. It is fine to be happily child free and also to be disappointed that parenthood is not an opportunity that will come easily to me/us. It is fine to be a complex person. Do I still have moments when I don’t know what my life is about? or what drives me? Of course. But then I remind myself that this is just part of being human and as long as I’m taking measures to ensure that I’m enjoying any opportunities that come along and shrugging my shoulders at those that don’t, then what more can I really do? ‘You just do what you can do’ has kind of become my new motto.

Does this sound like an awesome life? I’m aware that my life might not sound awesome to some. I’m aware that ‘feeling a little jealous about other’s babies’ while proudly proclaiming to be loving my child free life could raise the odd eyebrow and make me appear conflicted or in denial or some other such rubbish. On the other hand, I feel a little sanctimonious when I say it, but my life is fucking great compared to many people’s. Two years ago I would tell myself that we were very very rich and privileged and had a huge amount of security and stability compared to millions of people worldwide. It’s certainly true. I listen to the news. But that was not enough at the time to make me grateful for what I had or to stop me worrying about the things that I don’t have. But slowly and surely I improved the way I looked at my surroundings and by now I have found my gratitude and it is brilliant.

That’s enough waffle from me. Pictures sometimes say it better than words. The pictures below were taken on one of our local bush walks. I’ve enjoyed ‘nature’ for always. I’m going to sound preachy again but I love how being out in the uncivilised wilderness* takes you out of yourself. It’s also just beautiful, and a life without beauty and wonder and sunshine just isn’t worth living. Maybe rather than nature and biological wonders it’s astronomy, or great works of art, or gourmet travels or writing your own computer programs or yup, playing with your kids, that makes your life worth living. Whatever it is, make sure to get a regular dose.

granite tors1

grevillea moss

 

*Not really wilderness, and not very far from civilisation we were just two hours from home and a nice hot shower 🙂

Emotional resilience for the win.

Yikes, I haven’t blogged in weeks. Yesterday I was finally in the mood to blog and sat at the computer all prepared to write about how I’ve been a bit down, and how that has sapped my motivation. Instead of blogging I’ve done a fair bit of thinking about how I can be very ambitious and enthusiastic but then also somewhat fragile, with life crap putting me ‘in a funk’. To be fair, it HAS been a tough few weeks, with some deep-seated issues that have had to be contemplated (family stuff) but my resilience has not been as high as I would like. Perhaps that sounds a little cold-hearted. But when I say ‘emotional resilience’ I don’t mean that I don’t want to feel things, or that I don’t want upsetting situations to affect me.

Shifting perspective on certain things in my own mind really helped. You have to find a way to cheer on the positive side of the internal debate. I was just beginning to do this with some success and then an interesting thing happened.

I was literally sitting at the computer and about to write how life has been upsetting, but now I had processed everything that I needed to, or at least organised my life to the point that I wasn’t dwelling on something that was bothering me. And then I got a message from a friend. A pregnancy announcement. Now, I consider myself an unusual infertility blogger, I don’t write a lot about how I’m heartbroken that I can’t have kids; I definitely don’t write about ‘doing whatever it takes’ (there is plenty that I won’t do) and friends in real life have described me as pretty strong when it comes to dealing with this loss. In fact, my outward demeanour when it comes to discussing my lack of reproduction is so calm that some might be forgiven for thinking that it doesn’t upset me at all. Yet those familiar with infertility blogs or simply attuned to the difficult emotional issue of infertility (or subfertility, even) know that pregnancy announcements can hurt.

For whatever reason my friend chose to announce her pregnancy in a very casual and brief Facebook message. Along the lines of ‘by the way, I’m pregnant’. So, initially the hurt was about the delivery of the message. Anyway, because I was already thinking about emotional resilience a few thoughts occurred to me in quick succession: “pfft, whatever, even though she said she wasn’t interested in having kids I am 100% not surprised and good for her, I’m happy for her”, “hang on, am I denying my own feelings here? Surely I’m a little bit jealous?”, “yup, I am upset, a week ago I was indulging negative thoughts about how worthless I am and about how my life is going nowhere, and this doesn’t help”, “but, I was just pleased with dragging my sorry self out of that funk, and this doesn’t have to change that at all”. Well, maybe for one or two minutes.

In the end I wound up really proud of myself, and that’s why I wanted to write this while it’s still fresh, as a lesson to remember. In the end it doesn’t matter how the announcement was made because the fact that she is pregnant would have hurt a little regardless. Previously I may have dwelled on that hurt for too long and struggled with an inner conflict that I couldn’t resolve because I didn’t understand it. But I’ve done enough soul searching on this topic now that I can acknowledge the hurt, shed a few tears even, but then focus on the positive things that I still have, and then I can quickly get back to the main task of living the life that is right for me.

Is that a bit vague? In real terms it meant that although something affected me enough to shed a few tears of disappointment, I knew that no-one was to blame for that hurt, that sometimes life just hurts. So instead of losing motivation and watching garbage youtube videos while eating way too many corn chips, I was able to carry on with my pleasant afternoon. Yesterday that meant hanging out the washing, making veggie stock from scraps stored in the freezer, taking out my frustrations on the mountain with late afternoon shadows growing longer as I huffed and puffed and double-checked for pockets of denial, and then cooking a favourite soup to share with friends that evening.

Writing about the whole exercise in mental gymnastics now isn’t the easiest thing to do. Processing difficult emotions is great when you can do it quickly, and going over them for the purpose of blogging feels dangerously like old bad habits of over-analysing. But it’s fine, because I’m motivated to write this post not because it’s therapeutic for me to vent (not this time anyway), but because I genuinely hope that this could help someone else. When I first got told that I wouldn’t be making humans it was upsetting and I wasn’t sure why, there was a lot to figure out. I went looking for infertility blogs and I struggled to find one that I could really identify with. The crux of the matter was that I knew I could live a good life without raising children but then why was I still upset? The answer to that is very complex, and dependent on my particular circumstances, but one thing that should resonate with others struggling with infertility is feelings of being left out.

Yes, there was a tiny little bit of jealousy upon hearing that my friend was pregnant. And yes, the delivery of the message was very blunt and with no consideration shown towards my ‘situation’, but that wasn’t really what bothered me. The tears were for my lost friendship. Now this is really hard to write about, especially as a few of my friends might end up reading this! I talked about this with my husband last night and it was really useful. We talked about how friendships are formed and strengthened via shared experience.

Kids, especially when young, take a whole lot of focus in their parent’s lives. My focus is going to be elsewhere and I know that is going to affect my friendships. This is a really hard thing for me to admit, because I like to think of myself as a loyal friend. But I’m not going to know what it’s like to raise children, and they’re not going to know what it’s like to be me. And I have to strengthen my own focus in life rather than moping about the fact that mine is different. Speaking of which, this blog is helpful, but also not the main focus of my life! So that’s enough for now. I hope I got my point across that infertility is a bugger in that there are continual brief opportunities to be hurt but that as long as you have other good stuff going on then it’s easy enough to cope with. One of the benefits of infertility is extra time that you can devote to other passions, so I’m off to do that now!

autumnleaves
It’s autumn in the Southern Hemisphere, my favourite season

P.S. To any friends who are reading this, I still love you all dearly!

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.

My emotional life, and sharing menstruation data

This blog has been a little neglected this month. There haven’t been many posts. One of the contributing reasons is that my emotions have been out of kilter somewhat, perhaps for the last two weeks? What I mean is that I have been frustrated, irritable, weepy or unmotivated when I don’t want to be. Not that I have been out of control of my emotions constantly for the full two weeks (who could cope with that?). Generally, it has been when I get a little introspective, when I’m not preoccupied with a task, and when I have a chance to tune into ‘my inner self’ or whatever you’d like to call that complex mix of neurotransmitters and thought patterns, both conscious and subconscious.

It’s easy to blame ‘hormones’ for that kind of thing, and I certainly have in the past (pre-menstrual syndrome, anyone?). Arguably I now have even more reason to blame hormones for my emotional trouble. I now know that my body produces the ‘wrong amount’ of certain key hormones such as oestrogens and progestogens, hormones that are thought to directly affect mood. But the scientist side of me knows that I can’t always employ the hormonal scapegoat. For one thing, I don’t have the data. I’d love it if there was a personal medical device where I could frequently take a pin-prick of blood, quickly get an analysis of some key hormones and then alter my behaviour accordingly (just like diabetics currently do). Instead the closest thing I have is keeping an eye out for cervical mucus. For instance, your cervical mucus is the most helpful hint in terms of monitoring ovulation, as a surge of oestrogen around mid-cycle should lead to a surge of ‘egg-white (consistency)’ cervical mucus (EWCM).

My ever-shortening menstrual cycles led to some hope that my ovarian insufficiency might be going into remission. This can happen, and no-one knows why. That alone is enough to make me a little crazy; there is the grief associated with being barren, but then wanting to surmount that by focusing on other things that make my life great, but then thinking ‘maybe this month…’. That hope faded somewhat when I ‘didn’t feel like’ I ovulated this month (not very scientific, although probabilistically sound), and further with a lack of EWCM at the predicted time. Although I did see some EWCM a little later than the predicted time.

How did I even have a ‘predicted time of ovulation’? I wrote recently about coming to the end of my little paper calendar that I used to track my menstrual cycles. This year I have moved onto something a little more modern and am now using an app!

There are many menstruation tracking apps available, and quite a few of these are focused on trying to conceive, and many of them are annoyingly ‘girly’ (as noted here in one of my favourite blogs). But I chose ‘Clue’, because it was free and I liked the design, and then I was thrilled to see that they actually provide scientific references for the advice that they dole out. The app is extremely easy to use, and it does look good, but I have already noticed a few downsides to the app after using it for about 6 weeks*. The main reason that it has been less comforting than my pen and paper solution is actually the main purported benefit: it’s not just a tracking tool, but a prediction tool. For ‘normal’ women, it will point out your ‘fertile window’ and the best time to try and conceive (or not!), and then when your next period is due to arrive, based on your last three cycles.

But those predictions can be upsetting. They’re little reminders of the mind games mentioned above (will this month result in one of those rare spontaneous pregnancies?). There is mention of PCOS on the ‘helloclue’ website, but as far as I can tell, no recognition of ovarian insufficiency (or ovarian failure, or early menopause). What they do mention though is a new capability to turn off the predictions, although I can’t just yet as I’m on android. Therefore, I couldn’t help expecting some vague signs of ovulation a few weeks after my last period. I didn’t detect anything worth relying on, and then had the bad luck of attending a party that just happened to be seemingly all about pregnancy/babies**, right after the predicted ‘fertile window’ that didn’t eventuate.

So, being disappointed about not ovulating (probably not?) contributed to my less than sunny disposition. Then a few weeks later, the app tells me that my cycle is (over)due. Yes, there is a chance (1 in 1000 or so according to the doctors) that I am pregnant right now, but no, it probably just means that my cycles are irregular (still). So, I have broken my streak of ‘approaching normal menstrual cycle length’. Which brings me back full circle, as I wonder “perhaps I was overly moody this month because my ovaries are functioning even lower again?!”. The truth lies somewhere between ‘my issues’ and the way I handle them making me moody, or my hormonal state exacerbating my emotional responses, and it most certainly is some combination of the two.

And this is exactly why I’m happy to hand over my health data in return for this free app, even if it doesn’t perfectly fit my needs. Because behind the Clue app is the capability to aggregate data from millions and millions of women, and hopefully get at some of the truth behind our hormones and our health, emotional or otherwise.

grasshopper
Mood: happy and calm, while chasing this little guy with my camera

When a patient is their own advocate

Patient advocacy is generally thought of as when an individual or organisation advocates, argues for and supports a patient or a group of patients. But what about when the patient is willing and able to be their own advocate? This seems to be a more difficult situation primarily because we are emotional beings. Unresolvable health conditions can quickly lead to feelings of desperation, and desperate people often make poor choices.

This blog aims to help me understand what might be occurring deep inside my body. It helps me resolve not only what I want to feel about it all, but also what I want to do about it, if anything. I was dissatisfied with the information that was readily available (about ovarian insufficiency) from my doctor(s) and via quick google sessions (or even hours of searching, to be honest). So, I’m pleased to share any information I can distil from the somewhat more impenetrable scientific literature in case it helps another woman with ovarian insufficiency. So you can say that I am an advocate for women with ovarian insufficiency. But I’m not very loud about it. The main reason I am anonymous on this blog, and don’t share it as widely as I could, is that I’m wary of being seen as arrogant and ‘out of place’.

Delving into any area of science is a huge task. Combine that with the basic human foibles of endless hope or fearful hypochondria and things can go a little awry. When you’re feeling hopeful you don’t want to read some science that will dash those hopes, and when you’ve given in to fear you can get carried away with doom and gloom and focus too much on the possibilities of ‘what can go wrong’. Taking things slowly, yet with dogged persistence does seem to pay off though. And of course, it pays to moderate any enthusiasm, arrogance or worry.

I think I’m doing ok with it. I don’t spend much time learning about ovaries these days but considering that the condition doesn’t affect me much, and there is not much science being done in the area, then that strategy sounds wise. Of course I wish there were more science being carried out and I’ll be sure to grasp onto any new and exciting developments, if they happen. And I will try not to worry too much about being seen as arrogant.

Something that encouraged me was reading this amazing story. It’s about a patient with a very rare disease (much more rare than ovarian insufficiency), who dedicated herself to learning all that she could about her disease. Doctors dismissed her speculations on her own condition more than once, but in the end she was on the right track and her dedication has paid off not only by informing her own health but also that of others.

It’s so refreshing to find a story like this. It’s so uplifting to know that searching out reliable information can help, and that a patient can even do this on their own, till they find a researcher who can actually deliver the evidence that will move things forward.

P.S. A good advocate group for infertility of all types is:
http://www.resolve.org/

(US based)

shore

Women’s health eco tips

There was an interesting article in the latest New Scientist magazine about women being able to incubate their own IVF embryos. The procedure is called Intravaginal Culture and uses a special device to carry out fertilisation (bringing the sperm and oocytes together) that is then inserted into the woman’s vagina for maturation of embryos. The new scientist article was reporting on this trial which showed that this technique works just as well as traditional IVF. There are a few advantages of using the patient’s own body to grow these embryos but one that struck me instantly, and not mentioned explicitly by the authors, is that this method is more eco-friendly! Labs are expensive to run, and use a lot of electricity in addition to other materials (often quite a lot of disposable plastics). Incubators are used to create the right growing conditions for cells, and it’s often a tricky process to carefully maintain these conditions. Thankfully someone had the bright idea that those conditions were under our noses the whole time (literally).

My other eco tip is more widely relevant and personally relevant to me this week! In December I noted that my menstruation seemed to be coming more regularly and the good news is that that trend has continued : ) Yesterday I got my period again and after only 34 days!! I was really excited about that, and I’m happy to take it as a sign that my ovaries are up to something (hopefully trying to incubate their own follicles). So to celebrate, today I got myself a ‘treat’, I purchased my very first menstrual cup. I’d heard about these a while ago, as an alternative to disposable feminine hygiene products, but they are somewhat pricey, and I didn’t have much need for one last year.

IMG_20160118_175248 (1)
This is just a pic of the packaging, I was too excited and tried it out straight away

I can’t give a full review of the cup yet, as it’s my first day using it but I’m expecting it to be easier than tampons (you remove it less often), more hygienic (menstrual blood is flushed down the toilet instead of going into the rubbish/trash) and best of all creating less waste (not disposable and easily washed, hooray!).

I know some people are still going to be ‘grossed out’ over the whole thing and that is unfortunate, although not something that I’m concerned with really. I might have mentioned this before but it struck me as odd that where I was living in the states (just a few years ago), it was almost impossible to buy tampons without applicators. I know I tried using an applicator when I was a teenager but found that rather than making the process easier it just got in the way. So the applicator just ends up being an irrelevant piece of trash. Anyway, if you’re like me and not shy about touching your genitals (even if they have a little shed endometrium on them) and if you like the idea of creating less waste then these cups are a good idea. There are quite a few brands available and this Australian site has some tips on choosing one.

I’ll let you know how mine goes. So far I can report that they insert easier than you think! Mostly though, I’m happy to think that I’ll get a lot of use out of mine this year (fingers crossed for regular menstruation*) or not… (will regular menstruation lead to ovulation, which could lead to … pregnancy? yikes!).

*The last doctor I got advice from cautioned me against using the word ‘menstruation’ as he preferred to think of my vaginal bleeds as something a little more mysterious. I’m not assuming that I’m ovulating, but I’ll happily call this menstruation if they continue to appear every month. After all, language is fluid and biology is confusing.

Mythical OSCs

One reason that I try to keep up to date with scientific publications re: insufficient ovaries etc. is to keep an eye out for anything from a particular research group. Last month something was published from this group, from the lab of Jonathan Tilly. Not a research paper, but an application for a patent (1). This isn’t too surprising; applications of commercial research discoveries need to be patented before being published elsewhere. And like it or not, new technologies that help infertile couples are commercial in nature (even if a research group does not intend to make money off their discovery it’s a good idea to secure a patent rather than someone else doing so).

Why am I curious about the activities of J. Tilly’s lab? Because they are the main research group (in the world) investigating whether it is possible to create new human eggs. That is probably overstating and over-simplifying the matter but it’s true enough to say that this group have been ‘hunting for OSCs’ for quite a few years now. What is an OSC? It stands for Oogonial Stem Cell (Tilly’s term). An oogonium is the type of cell that develops to form an egg (more correctly: oocyte or ovum, depending on developmental stage), so an OSC would be a stem cell that produces eggs, theoretically. But whereas our bodies contain stem cells to renew various cells in our bodies (most notably our blood) certain types of cells are thought to be not renewed in adult humans. For instance, brain cell renewal, while a nice idea, remains to be unproven.

Similarly, women are told that they are ‘born with all the eggs she will ever produce’. This is because current dogma states that the formation of eggs (actually oocytes) form in a growing female embryo during the mother’s pregnancy. The number of oocytes in any ovary actually peaks before the female baby is even born. This means we lose ‘eggs’ from our ovaries before we even join the world. That’s OK, as the number left remaining when the female child is born is enough to supply at least 3 decades of fertility. At least, this estimate of cell numbers is what the dogma (born with all your eggs) is based upon (I’d like to write a separate post on this calculation some time if I get around to it!). This is just one of the reasons why the idea of egg stem cells/OSCs seems so radical, there just doesn’t seem to be a need for them in adult women.

Of course I’d like to believe that they exist, so that rather than a depleted egg basket, I can think of my ovaries as a production line that needs a good service and then can be switched back on. This is not the process that Tilly et al. are claiming in their patent application, however. Instead, the patent is protecting the idea of using the mitochondria from the OSCs to boost other egg cells. This is wise seeing as a patent to produce human eggs skirts right along the controversial edge of what is ethically and legally patentable (I am no expert in patent law, but in Australian patent law at least, you cannot patent ‘human beings, and the biological processes for their generation’).

So the whole thing is very controversial, do these cells, with the desired ability to produce viable eggs really exist? Hopefully a peer-reviewed scientific article will follow the publication of this patent application, and then we will get to hear some of the appraisals (negative or otherwise) from those in the field that really know about this sort of thing! In the meantime, human OSCs remain mythical.

(1) US20150353887 A1 Compositions and Methods for Autologous Germline Mitochondrial Energy Transfer

Cycle tracking (Menstrual)

2015 has ended. Among other things this means that my little pocket calendar is now full. I picked it up shortly after we began trying to conceive. My cycles had always been a bit irregular (when not on the contraceptive pill), and at the time my husband had lots of short work trips to another city. For a while, we assumed that it was difficult to conceive due to a timing issue. Hence the use of the calendar. Writing about this reminds me that back then (the second half of 2014) I was also using home ovulation tests and a mini-microscope to see if i was producing oestrogen (the ‘fern’ test).

pocket_calendar

A common piece of advice given to couples trying to conceive (and usually just to the woman) is ‘just relax and it will happen’. I’ve been the recipient of this old chestnut myself, and been told that tracking my periods and trying to figure out if/when ovulation is occurring is counter-productive. I didn’t pay this much heed. Besides the fact that it is a fairly useless (however well-meaning) piece of advice, it just doesn’t suit me to lack information on a problem i’m trying to solve. So, I now have data for the past 16 ‘cycles’.

I say ‘cycles’ in inverted commas because what this data properly displays is intervals between vaginal bleeds. Sounds less pleasant, eh? I was actually mildly offended when a doctor recently corrected me when I was referring to my ‘periods’. He said that the term period refers only to that which happens after ovulation, but seeing as I am probably not ovulating then those times that I have had to use feminine hygiene products should be referred to as ‘vaginal bleeds’. This was the doctor who gave me a second opinion recently, and this was a big clue that he believed ovarian insufficiency was the same thing as early menopause. I still believe that my situation is a lot more complicated than that. For one thing, I have seen positive home ovulation tests, yet not constantly elevated luteinising hormone. Similarly my oestrogen levels constantly change, not as regularly and predictably as a fertile woman, but it’s not a desert down there either.

cycletracking

Back to the topic at hand, cycle tracking, and I’m really glad that I have kept track. It’s true that I’ve had some large gaps with no bleeding, and these are worrisome. After the largest gap of nearly 4 months (cycle 14) I was glad to see that the next gap was less than 2 months. Then, in early December it occurred to me that it would be great to bleed again before Christmas. I got my wish! This small amount of excitement led me to a bad scientific conclusion, in that my cycles seem to be trending towards more normal (bad scientist because 3 data points barely support a trend). However, this was enough to spur me on to make a chart, and it points out a very odd coincidence:

There are 3 extra long (> 2 month) cycles (no. 7, 11 and 14). Before each of these were the times when I had my hormones tested. That is, I had blood drawn for tests 4 weeks into cycle 7, 8 weeks into cycle 11 and 12 days into cycle 14. Basically, although i’d had some long cycles previously (or ‘skipped’ some), the really long intervals in between bleeds only occurred when i’d lost some blood due to hormone testing. Was my body lacking in something or so low in something that even a small blood draw of 30-40 mLs could throw it even further off kilter??

I won’t really know for sure, but I can at least keep tracking my cycles to see if avoiding needles and syringes coincides with some intervals approaching 28 days. Eventually it may be nice to get some proper cycle day 2/3 (baseline) tests done, which would be much more informative than the AMH/FSH readings I have currently which were taken during the intervals of inactivity. But i’ll only request those tests if/when my periods become more regular.

The chart also shows that I DID have some intervals of normal length, which was a nice reminder after focusing on those long ones. And my previous doctor was happy to call these ‘periods’, seeing as the amount, duration and and symptoms such as cramping, all appeared to be normal. I’m not going to spend 2016 pining for a pregnancy (there’s too much else to do, and plenty that is much more entertaining besides) but it’s nice to know that my ovaries are not completely defunct and may even be getting better (maybe? perhaps? we’ll see…).

 

Second opinion

I haven’t been blogging much, I’ve been too busy with the new job, buying gifts, etc. For the sake of continuity though, I wanted to write this update about what happened when we got a second opinion about my chances of reproduction.

I’ll start with the short version first: The second doctor didn’t give me any hope either. He didn’t recommend trying any assisted reproduction, although he did acknowledge that it was a very personal decision, and an emotional one at that. His medical opinion, based on the medical history we gave (which boils down to a few hormone tests really) and his not-insignificant experience, was that I wouldn’t be releasing any eggs.

I’m not at all bummed out by this, even though some might expect that reaction. I’m also not surprised by the response of friends when we briefly mentioned that we were perhaps, maybe, considering IVF/ART, with the first step of obtaining this second opinion. Their response was excitement for us, or thinking they were ‘joining us in excitement’. I can’t speak for my husband, but I was anything but excited at this prospect. Part of that was that I expected this answer from the doctor. I’ve read the scientific literature surrounding this situation. Over the years the message has slowly been changing from ‘premature menopause’ to ‘Well, there are a lot of similarities to peri-menopausal women, although we don’t really know why that is. The outcome, however, for these two groups of women is usually the same (nearing the end of their reproductive life stage). Usually…’

One of the reasons I chose the doctor that I did was that he came highly recommended by the ART provider that he is affiliated with. There are two major IVF/ART providers in Australia (although there seem to be more and more smaller companies getting involved…). My last doctor was affiliated with one of them, and this new doc is affiliated with the other. I figured this could give me an idea of how these organisations deal with women like me, with ovarian insufficiency. The answer is that they don’t. Not really. There is not much point getting upset about that, the state of the technology is just not there. We don’t understand ovulation well enough. Ovarian insufficiency occurs for 1% of women under 40, and we rarely know why, let alone if it can be ‘fixed’.

Getting back to our interactions with the new doc, I could tell that he wasn’t across the newest findings in relation to ovarian insufficiency. I was probably an annoying patient, asking highly technical questions and interrupting his explanations because I didn’t require the long answers he was giving (we only had 30 mins for our appointment and I wanted to get our moneys worth!). But he used the term ‘ovarian failure’ (which is what my previous doc had written on her records), rather than ‘ovarian insufficiency’ (which I had written on the medical history form). I could also glean that he believed that ovarian failure essentially meant menopause, done and dusted. And I know that’s not quite right.

One quite useful thing was that he convinced me to not be concerned about endometriosis. I’ve previously worried that endometriosis could be an underlying factor in my subfertility, and that in turn makes me wonder that I should perhaps do something about it (but equally perhaps not). The reassuring explanation for the data in Nieweglowska et al 2015 is that these types of endometriomas are the easiest to image via ultrasound, therefore I would know if I had those on my ovaries (I’ve had them scanned a few times in the past few years).

There were lots more thought-provoking things that came out of our doctors appointment, but that will do for this little update. I think we left it at ‘This perhaps requires more thinking, and a resolution of emotions before any final decisions are made’. I’m generally pretty terrible with decisions, especially any that require figuring out emotions! So any further thought on possible ART attempts can definitely wait till after Christmas, if not longer. I suppose if the decision process takes too long, then that is a decision in itself. And that is totally fine.

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