Category Archives: Support

New year, new you? (written 4th January 2015)

It’s the New Year and now I can actually say our cycle occurs this month. THIS MONTH! Oh my gosh. Far from feeling excited, I think the closer we get to D-day the more nervous and sick I feel. We are spending a house deposit on getting to the States for this treatment. What if our donor doesn’t produce any good eggs, what if my husband’s holiday lifestyle over the last month affects the quality of our embryos, what if I haven’t done enough to get my body in good condition for this, what if our embryos don’t last the distance, what if it just doesn’t work. Yes, the torture of the “what if’s” is kicking in and despite my best attempts to ignore them and ‘live in the moment’, they can’t help but creep on into my thoughts, making me either cry or want to puke.

Not long before Christmas we received our official treatment plan. At that stage I could still get excited about everything and it truly felt as if these three pieces of paper made everything real. On the fifth of January (which is now tomorrow!) I inject myself with a long-lasting Lucrin (Lupron) injection to help sync my cycle, followed by blood-work and ultrasounds on the 12th and 20th here in New Zealand. On the 13th of January I start Progynova to build my uterine lining and on the 23rd we hop on a plane to the USA. I have a final blood test and ultrasound scheduled in San Diego on the 27th and we can expect egg collection from our donor to occur somewhere between the 27th and 30th of January, with embryo transfer happening somewhere between the 2nd and 5th of February. The 5th of February is our wedding anniversary which for some strange reason is the only thing making me feel good about this cycle.

It’s difficult after so much disappointment over the last four years to believe that something could work. I remember thinking the same before our last donor cycle, which despite showing so much promise was unsuccessful, only fuelling my mental fire that nothing will ever work for us. I know I need to change my thinking, and I’m trying hard, but it really is challenging to believe I’ll ever be pregnant. The thought that one day I could be actually freaks me out a bit now. After being so ready for it four years ago, I’ve spent so long in the infertility trenches that the thought of being pregnant is an alien concept to me. I can’t even begin to imagine my reaction were we to get a positive test result. It almost seems like it would be a bittersweet moment and that makes me sad. Then there’s the pregnancy itself, am I still ready for it? I can’t even imagine watching my body change, slowly coming to realise the being within. It seems totally unreal.

Ok, so the above was written a few days ago and now I can officially say I’m really not coping. I’m hoping like hell it’s just a bad week because if I have to feel like this for another month or so I may actually go insane. Facebook today is packed full of pregnant people complaining about their pregnancies and I actually want to break something. Yes it’s hot, I understand, but honestly be a little grateful for what you have. I know I’m overly sensitive at the moment but it just strikes me that some people get things a little too easily sometimes and they don’t truly appreciate all that they do have. I won’t lie, I myself have fallen into this category. I often have to make myself take a step back and look at everything we’ve accomplished and everything we have. But do other people do the same? I can think of a few who should!

Making matters worse is the fact that we’ve opted to try and keep this cycle more of a secret so there’s not even anyone I can really talk to. I can’t chat with my friends as we’re hoping like hell for a surprise for them in the not to distant future. I can’t post on Twitter as some of my IRL (in real life) friends follow me on there. I can’t even talk to my hubby as, being the everlasting optimist, I’m not sure he entirely gets where my head is at. Only a week into January and already I’m crying nearly every day. I’m seriously questioning whether I can keep this up for another year. Let’s hope this cycle works and I won’t have to, but I can’t help but feel I’ve written that before.

 

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The ultimate in online shopping (written 21st October 2014)

Ok, so I haven’t been entirely honest on this blog. We’ve actually been more in contact with one of the American fertility centres than I’ve let on. After telling what seemed like the world about our last DEIVF cycle we decided we wanted to be a little bit more discreet, at least initially, with this one. Admittedly I’ve blabbed more than I had intended as it’s just so hard to keep quiet when you’re so excited about something, and my thin disguise has probably been extraordinarily see-through, but at least I’ve tried.

So, feeling frustrated at our lack of progress, the day after we get our failed cycle result we start investigating American fertility clinics. I’ve heard good things about San Diego Fertility Center (including a friend who is pregnant with their help) so we start there, but also check out Shady Grove in Washington DC too. Less than 24 hours later we’ve registered with San Diego’s donor database (as well as with Egg Donor America), which you can do without actually contacting them for treatment. It’s a bizarre thing. I feel like a complete stalker scrolling through the donor databases, it’s like online shopping but for people rather than things. It’s just a surreal, almost sci-fi experience, and we eventually find ourselves getting so hung up or comparing the smallest and craziest things that we have to take a step back and remind ourselves that these are real people we’re debating, not what colour underwear or socks to buy.

After a small discussion (basically me pushing my case) we decide on a donor. Just like that. It seems nuts that it can be done so easily that but this girl just feels right. She looks a little like me, she’s smart, down-to-earth, caring, and the things she writes in her profile sound like things I would write myself. I’m sold.

Two days after our failed donor cycle we email our doctor here in NZ to try and speed up the scheduling of our WTF appointment and seek his advice on next steps, including his thoughts on treatment in the States – our clinic works closely with San Diego Fertility Center so we’re hoping he has some valuable insight. It takes 4 days to get a response, which is pretty impressive given he’s on leave, and we have an appointment locked in for his first week back (three weeks from our failed result).

Hedging our bets we express our interest with San Diego a couple of days after we email our NZ doctor, via their online queries form. They’re super quick, less than 12 hours later we have a reply from them, with more information than we could ever have dreamed possible and our preliminary paperwork (new patient form and medical history) all ready to complete and return. The donor coordinator there is absolutely lovely (not to mention she’s been through DEIVF successfully herself so understands what this is like) and we fire questions and answers back and forth easily. We mention that my husband potentially has a work trip to the States planned in December and that if at all possible we’d like to be able to work with that to save on airfares. She’s unfazed, says that that timeline is totally achievable, and matches us with our donor! Matched, meaning she’s ours and no one else can nab her (but we can also pull out if we decide we don’t want her as our donor or decide not to proceed with treatment). Wow, mind-blowing. And it continues…less than a week later (although it could’ve been even sooner if we’d got our act together) we’ve got a phone appointment with the coordinator and the ball is well and truly rolling.

Over the phone we chat about what’s involved and what our options are, an easier conversation than most as we’ve just completed a donor cycle so know what to expect, and she’s booked us in for a phone appointment not only with one of their nurses but also one of their doctors too, AND the calls are only a week away! The speed at which they move is astounding! I thought I would be freaked out about how fast things are progressing but I’m excited. We don’t feel pressured by them at all and it just feels right.

Then comes the bad news, our donor has just started a new job and doesn’t want to take leave so early in her employment. Although we ask about potential timelines of when she would be able to complete a cycle, she’s unable to give any indication, so it looks like we’re back to the drawing board donor-wise. We have a few donors on our favourites list and there are more donors popping back into the pool everyday so hopefully it won’t be too difficult finding a replacement. We push on.

The call with the nurse and the following day the doctor, go smoothly and quickly. As with the donor coordinator, our recent donor cycle makes things so much easier. The nurse fires us through more information as well as an indication of the drugs I’ll be on, and a list of the pre-work required before we can start a cycle. This includes blood tests for both of us for everything under the sun (Blood Type/Rh, TSH, Varicella, Rubella, Prolactin, HTLV I and II, HIV, Hep C, RPR, Hep B Surface Antigen, Cystic Fibrosis Carrier Status), another semen analysis for my hubby, a request for an updated hysteroscopy for me, and another psychological consult for us both to make sure we’re all over the implications of not only a donor cycle but also one that could potentially be anonymous – something that’s not really approved of here in NZ.

Did I say the ball was rolling? Well now it’s a growing snowball! We sign consents to get our notes sent from our clinic over to San Diego, and it’s all on, we’re really doing this! Time to call the bank for that loan (which they thankfully grant us)! Nothing like the feeling of adding $50k to your mortgage for a chance at what most people can get for free. That’s the one bitter pill to swallow through all of this excitement. I hate owing money and to have to increase our mortgage so significantly really irks me. Still, it will hopefully all be worth it in the end.

So what next? Well, due to the tight timelines of when a hysteroscopy can be performed and where I currently sit in my cycle, I change our scheduled WTF appointment to a theatre booking for my hysteroscopy instead. There’s no going back now, especially as we pay our fee to the NZ clinic for their part in this process. Sheesh, less than two weeks since we approach San Diego and the decision is not only made but in full swing. It’s amazing, exciting, and overwhelming all at the same time.

We go back to the donor drawing board and with a bit of consultation decide on another donor but again there’s a hitch. While her profile indicates she’s available from November, due to the late arrival of her period from her last (and first) donation, she won’t be able to donate until early in the New Year. We’re just not having much luck with this! We go back to the database but after a bit of discussion decide that we just don’t want to compromise that much on a donor. The universe is trying to tell us something and we should listen. December is just not right for this process. We opt to wait for the New Year and stick with our second donor choice. We’re matched. She’s ours and we’re hers, for this cycle at least. According to our donor coordinator this donor is absolutely adorable and one of her favourites in the system, she’s “gorgeous, bubbly, enthusiastic, and just so grateful to be given the opportunity to change lives” which makes me feel really good about this choice. Let’s just hope nothing else goes wrong!

So onto the serious stuff. My hysteroscopy. As previously mentioned there is a tight timeframe on this as it needs to be completed between days 7 & 12 of your cycle. The date of our WTF appointment (that I switch to my hysteroscopy appointment) is day 12 for me so there’s no time to lose. Unfortunately it’s also the first day of our annual work conference which I’ve been helping organise for the larger part of this year. Timing couldn’t be worse but thankfully the conference team is made up of some pretty amazing women who completely ‘get it’ and don’t hesitate in telling me to continue with the appointment. So after an insanely early 5:30am breakfast (no eating for 6 hours pre-op just in case) and some last minute conference stuff in the morning, I head off to my operation. For the first time in our whole fertility process I’m off to a big appointment alone. My husband has a major part to play (presenting to 300 people) at the conference so, despite desperately wanting to be there for me, can’t make it along. I’m just hoping like hell I can make it back to the conference in time for his presentation! They say the hysteroscopy should take 30 minutes so I should be ok, but if it gets too painful and they have to sedate me, I’ll be stuck there longer and might miss him present.

Well painful? It was the most excruciating thing ever and I felt like I was about to vomit through a fair chunk of it. On instruction I’d taken three paracetamol tablets an hour before and they’d hoped this would be enough to control the pain. It’s not. My legs go up in the stirrups, ever so dignified, plastic is guided under my back to “catch the fluid”, mmmm delicious. First they insert a speculum much like a regular smear, followed by an internal rinse of the area and the insertion of a little camera. It’s a little uncomfortable, with some mild period-like cramping, but overall not too painful. That is until they get to my cervix. My cervix won’t sit still and keeps running away so they’re forced to clamp it to hold it in place. There’s a little pinch and a shoot of pain but at least it now stays put. And then the excruciating agony begins. I get the cold sweats and honestly feel like I’m about to throw up. I can’t believe people are able to do this without pain relief, and my pain threshold is (or at least used to be) pretty high. I want to cry and actually come close to blacking out – or at least being so much in pain that I don’t really remember what was happening in the room, and the voice of the nurse telling me to take deep breaths seem fuzzy and miles away. Halfway through they dose me up with painkillers, just a small dose so it doesn’t take the pain away but it does help. Apparently I have a tight cervix, great. What else can my body do to make this a nightmare for me.

And then it’s done. I feel weak but relieved it’s over, and so so grateful for the amazing nurse (both of them were really lovely and supportive but there’s one in particular, who’s our favourite at the clinic) who was simply fantastic, held my hand and talked me through the ordeal. I couldn’t have done it without her. They keep me there for observation for another 30 minutes or so, feeding me toast and tea, before I’m allowed to leave. I’m not permitted to drive after the drugs they’ve given me but my amazing friend C (one of the fabulous conference girls) has offered to pick me up and race me back to conference. She drives like the wind and we make it back just in time for my hubby’s (magnificent) presentation. I’m stoked we made it and insanely grateful to have such wonderful friends. I kick into two days of conference and socialising, desperately trying to hide my cramps and other side-effects of the treatment. The physical stuff I can handle and hide ok but it’s the emotional stuff that takes its toll. It’s hard to be happy and social (especially around so many cheery fertiles – “I’ve also got a successful breeding program at home”, yes, that came up in more than one speech to the attendees) when you just want to curl up and cry at the unfairness of the world. I miss one of the functions (more to extreme tiredness than anything else) but manage to make it through pretending it’s all ok.

And here we are another week on, blood tests were ticked of the list this morning, counselling appointment is booked for two weeks time, and evaluation cycle will start with my next period. Hold onto your hats kids it’s full steam ahead, I can only hope that we’ll get the result we dream of at the end of the ride.

 

 

 

 


From the archives of my mind

I saw a great link on Facebook the other day, “The 8 biggest misconceptions about infertility” (oh my gosh, number 7 in droves – I can’t emphasise that point enough and definitely can’t write it better myself!). There are quite a few of these kinds of posts floating around, a never-ending attempt to get fertiles to understand the many intricacies of being infertile, but this was one of the best I’ve seen so far so I thought I’d share it and add a few of my own observations to boot.

For a while now I’ve had friends and family requesting I write a blog post about what they can do to help – what to say, what not to say, how things look from my perspective – and until now (despite a few attempts at starting posts) I’ve held off doing it. There really are so many out there it always seemed a bit unnecessary for me to add to the pile. However, I’ve decided to go ahead and contribute. One, because if this reaches even just one more person and aids in their understanding then it’s worth it; two, because of the post mentioned above; and three because of a line in an email I received that, while intended in the best possible way, has really stuck with me and made me realise that some people still just don’t get it. So here we go:

From my own experiences these are some things you should never say to an infertile:

 

“You guys just need to relax” / “You just need a holiday”

Uh, no. Believe me, we’ve tried relaxing, we’ve tried having a holiday and we’re still not pregnant. Funnily enough because our infertility is not related to any level of stress or busyness in our lives. I have a/various medical issues that are stopping us from having children. I have endometriosis and my eggs, while I have plenty of them, are (to put it very bluntly) fucked. This has nothing to do with my age, my sexual history, or any of the many activities I’ve done throughout my life. It’s simply a truckload of bad luck that has befallen my reproductive system, and no amount of relaxing is going to change that.

 

“If you just give up it will happen”

One of my personal favourites. No, if we give up, we remain childless*. As per the above paragraph, our infertility is a MEDICAL CONDITION. Much like relaxing or going on holiday, giving up is not going to make my endometriosis damage disappear or magically make eggs start working. Giving up means no more chances for children. Zilch. Nada. None. Giving up means us throwing in the towel and accepting that we will never have a child to call our own.

 

“Well you can always adopt”

Yes, we can certainly TRY to adopt. While this can be quite an inflammatory statement for many infertiles, a minimisation of their desire to have a child that is biologically and genetically theirs, this is not the case for my husband and I. We yearn for a child and whether they are genetically related to us or not isn’t a concern. Yes, we’re grieving the fact that we will never have a child that is genetically related to both of us but in reality that is a very minor part of our process. We will and are openly pursuing adoption, unfortunately it’s not as easy as you would think. The statistics rolled out at the adoption evening we went to stated only 5 adoptions in our area in the previous year and 54 couples on the waiting list. Those are not good odds. Even if we make it through the endless tests, evaluations, home visits and referrals, and manage to get our names into the adoption database, the chances of us actually being chosen by a set of birth parents is slim to none. So no, we can’t “always adopt”.

 

“Such & Such’s uncle’s friend’s cousin-in-law tried for years then just did blahblah and surprise they were pregnant!”

While it may seem an inspiring story, and in the initial stages of infertility they often can be, we’re not Such & Such’s uncle’s friend’s cousin-in-law and we never will be. Please don’t compare us to these amazing hard-to-believe success stories, they’re hard-to-believe for a reason, they’re rare. [Insert random person here]’s journey will more than likely be completely different to our own and is therefore likely to have entirely different reasons for success/failure. Not only can it make us feel bad that we’re not doing enough or doing too much, but it can also add extra pressure both financially and emotionally when we feel the need to try and emulate that other person’s journey in the hope it brings success for us too.

 

“Oh, you can have mine!”

I know it’s intended as a joke and I don’t lose my sense of humour entirely just because I’m infertile, but trust me, this far down the infertility track offering up your children is far from helpful. I’m nearly at the point now where I will take people up on this offer and respond with a “Oh sure, totally! Now if you’ll just sign these adoption papers”, only I’m not sure the joke would go down so well when thrown back at the joker. Lord knows I don’t need another stare and awkward silence of ‘this woman is crazy’.

 

“You wouldn’t want children so desperately if you had them, they’re such hard work/so naughty/a handful”

Yes, I would. I know what children can be like, I was a nanny in my younger days, have babysat many a child, and was also pretty much an adult when my younger sister was born, I know exactly what I’m getting myself into. But that’s beside the point. Surely infertiles deserve to experience the joy, trials and tribulations of having children the same as everyone else, regardless of whether they know what they’re getting themselves into or not. I’m pretty sure a large percentage of parents, fertile or otherwise, have no clue as to what having a child involves, so please, allow us the same civilities as the rest of the population. There aren’t many parents who would voluntarily give their kids up once they have them.

 

“I struggled with infertility too, we were trying for [insert number of months less than 12 in here] before we got pregnant”

Now believe me, I’m not trying to minimise your struggle to get pregnant, I know that every month that you’re not pregnant when you’re trying to conceive is a massive disappointment. I know it hurts when you don’t get that positive result month after month, but it is considered perfectly normal to try for a child for up to a year before you conceive. A baby conceived in under a year is not a child conceived following infertility (recurrent pregnancy loss excluded). It may feel like it, once again I know those months can be devastating, but medically speaking infertility is “the failure to conceive following twelve months of (frequent/perfectly timed) unprotected intercourse”. You may be trying to connect and empathise with us in our ‘common struggle’ but, from my perspective at least, you’re more likely to invoke jealously and anger or a conversational disengagement from me. Yes, I feel like a bitter old lady having this reaction but it certainly feels that, when it comes to infertility, I’ve been around the block more than once and would almost kill to have been able to conceive a child in less than a year.

 

So what CAN you do? Well, it’s hard to say because who knows how we’re going to feel on any given day. Best you can do is enquire.

 

Ask us how we’re doing, what’s going on, how we’re feeling.

We’ll soon enough let you know if we don’t want to talk about it. More often than not I’m happy to discuss anything and am just glad that someone’s cared enough to ask. But if we don’t feel like talking, please don’t be offended if we brush you off and change the subject, on those days it’s pure survival mode, we either distract ourselves & change the subject, or cry, and believe me there’s enough crying behind closed doors we don’t want to be having a breakdown in front of you too!

 

Invite us along to your gatherings.

We may decline to attend your child’s birthday party or a social event with loads of kids. We may decline these events often, but please don’t mistake this for us not wanting to attend. The majority of the time we desperately want to join in but the reality of being surrounded by kids, and parents talking about them, is sometimes more than we can bear. Once again it’s survival mode. We’ll try and come along to as much as we can so please continue to ask us. It may seem like it’s not worthwhile, that we’ll say “no” anyway, or that you’re putting everyone in an awkward situation by extending the invitation to ‘the infertiles’, but the alternative is so much worse. By not being invited to events that everyone else gets to go to, and finding out after the occasion, we feel even more alienated from the crowd; that we’re not only losing our child but that we’re losing our friends as well.

 

Remember that we love your kids.

We may not see them often or we may seem a little sad when visiting but please remember that we absolutely adore your children. They’re not only awesome kids, fun to play with, an extension of you (our friends and family), but they also help us to remember why we’re going through this hell of fertility treatments and why we cling so desperately to this rollercoaster of hope. They are all beautiful souls and we love them as if they were our own.

 

Be considerate when announcing your pregnancies.

Take us aside or let us know privately that you’ve expecting a/another bundle of joy rather than including us when you broadcast it to the wider group or pop it up on Facebook. We will be thrilled for you but remember we’re also grieving for ourselves and we need time to process this information and work through our sadness for our own situation before we face the wider world. This may seem selfish but bear in mind we so desperately want what you have (in this sense) and a pregnancy announcement is yet another reminder that we’re lagging behind, unable to participate in the joys (and trials) of parenthood. Please believe me when I say our reaction has nothing at all to do with your happy news, we are absolutely stoked for you and will be there for both you and your child/children always, we may just take a moment to display the appropriate social graces, pop a smile on our face and congratulate you.

 

Don’t get angry or upset when we gaze longingly at your baby bump.

We’re not trying to stare or be offensive, we just so desperately want to have a bump of our own.

 

Understand that we may not publicly congratulate you over social media.

I’m sure some people think it weird that I’ve personally messaged them over Facebook or the like rather than add to the ever-growing congratulatory comments that follow their pregnancy or birth announcement. I may ‘like’ your pregnancy/birth post but I will very rarely comment publically on it. I’m not trying to be strange, I’m merely trying to avoid the onslaught of notifications telling me that someone else has wished you congratulations. Those constant reminders that we may never be in your shoes can be totally soul-destroying. Once again we are truly happy for you but need the space to continue our battle without being reminded of what we’re missing out on.

 

So that’s a start, I hope it helps. If you can add to this list from your own experiences please feel free to do so, I’d love to hear of other people’s thoughts/reactions/experiences too.

 


*I say childless here, for all those up with the ‘childless’ versus ‘childfree’ debate, because for us it will always be childless – while we can handle living without a child and will enjoy life to the fullest were that to happen – it will never be the choice we wanted and hence we are ‘child-less’.


The Bell Curve

I’ve come to the realisation that infertility support, much like most things in life, operates on the principle of a bell curve. Initially, no one has a clue what you’re going through, you naturally don’t share as much because “everything’s going to be alright”, so people don’t really know what your life is like, and those who do don’t really know how to deal with it. You progress on and, like a rolling snowball gathering snow, more and more people find out. You find others going through the same thing, your friends and family learn more about the process, support is limitless. Time proceeds some more. Those who were in the same boat have found their answer and realised their dream. The groups diminish. People run out of things to say, unsure of where to go from here, and suddenly you find yourself alone again, adrift on a sea of lost hope and broken dreams.

I think the hardest part of this for me is the loss of my husband’s understanding. Friends, family, I can deal with. There’s nothing more they can do, I know they’re there for me if I call on them. My husband is different. We’re in this together irrespective of the rest of the world; I need him to be there and to understand.

Now anyone who has delved into the world of conception will know that it takes a bit to get your guy on board. Initially he doesn’t understand your cycle, why you take your temperature every morning, have 101 different tests, or the importance of ‘being on a schedule’….and let’s be honest, he doesn’t want to. He doesn’t get the heartache you feel when you see pregnant bellies or tiny humans. He doesn’t comprehend how these things break you apart piece-by-piece no matter how much you try and explain it. And then one day it happens. His moment of clarity.

Maybe it’s the constant reminders, the appointments, the shear number of tests. Perhaps, it’s that the heartache finally gets to him too, or through some strange form of osmosis the gravity of the situation permeates his consciousness. Whatever the reason, it finally sinks in and he magically understands. He’s there and he gets it and he sympathises like no one else can. For a while things are great, you can really talk, you know how each other is feeling, and then as quickly as it appeared it’s gone.

Does he get sick of it? I don’t know. Adopt some overly positive hope for the future? Probably. Just want to be ‘normal’? Definitely, but don’t we all just want to be ‘normal’. I’d love to hang out at work drinks on a Friday and actually be able to drink; to look around at the masses of pregnant women I work with and not bat an eye, not feel a sharp pang of jealousy; to wake up in the morning and grab a coffee to kick-start my day; to not have to stress at how in hell I’m going to manage to fit in all my appointments for the following week and still actually manage to have time for work. But I can’t. I’m not normal, and while he is physically, he made the mistake of marrying the infertile, which makes him abnormal by default, so why can’t he understand. After all that time of ‘getting it’, he suddenly doesn’t, and I’m lost, teetering on the far edge of the bell curve.


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