Category Archives: Side effects

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.

 

 

 

 

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Is the third time a charm?

Wow, we’ve started IVF #3. It’s hard to believe after 9 months of prep and planning it’s finally here! It’s hard to believe that it could actually work, but it’s possible, presumably even more possible than the last two because this time we’re using someone else’s eggs, this could give us the Bumble we’ve been waiting for. Our beautiful donor has come through the barrage of tests with flying colours, except for perhaps a slightly low hormone test, but certainly nothing to be concerned about, and after too many months sitting on red, the light is suddenly green.

It’s very strange playing no part in this process until near the end. It’s bizarre to think that right now the precursor to our little Bumble could be growing away in someone else’s tummy. Crazy to be going through an IVF cycle without the daily injections and follicle scans but I’m jumping the gun, we’re not even at that stage yet. And I’m not entirely off the hook. Here’s how things have gone down so far.

Just over a month ago we got the call to say our next cycle was going ahead in September, WOOHOO! I get to start my down-reg drugs mid-August and my donor starts her stims in September in line with her cycle. A quick yet disorganised trip to the clinic for injection instructions, a stop at the chemist for drugs, and I’m good to go. Only one injection to start with for me as, unlike my last cycle where I was doing daily Lucrin injections to shut down my natural cycle, this injection lasts a whole month. I’m prepared for the worst as this is the drug I reacted badly to last time – lucky-dip Lucrin I called it, with a new side-effect every day – and now I’m taking a whole month’s worth in one hit, eek.

What’s worse I realise on the way home, is that the date I’m to start the injection is the one weekend this winter that we’re away…..and not just away the two of us hiding out, but away snowboarding with a whole heap of work colleagues (my husband and I work in the same place) who don’t know about our infertility struggles. As I’ve said before I’m all for letting people know about what we’re going through but my hubs was, until recently, on a different wave-length. By the time he’d got his head around telling his team at work, it seemed a bit awkward to bring up; I mean it’s not exactly your run-of-the-mill morning coffee conversation, “Morning guys! Hey guess what, you know how my wife has been a withdrawn yet emotionally crazy person for most of the time you’ve known her, well it turns out we’ve been battling infertility for the last three and half years. Can you pass the sugar?”

So I spent a good couple of weeks stressing about the various scenarios that could arise. What if I accidentally let something slip and there’s the whole depressing explanation of our infertile lives while everyone is supposed to be chilling and having a good time? What if someone walks in on me doing my injection? What if the side effects hit hard and I flip out for no apparent reason? What if I end up with vertigo again and can’t partake in the weekend activities? Now I know this may seem silly but bear in mind these guys are kinda the cool kids (if there is still such a thing at this age) – they’re really lovely, fun, friendly, gorgeous people but let’s just say I feel like the hick hillbilly cousin next to them. I’m shy and quiet, am hopeless with make-up or anything girly, and at the moment don’t drink. Add to that the nervousness of IVF and I feel even more dull than normal.

Eventually I decide whatever will be will be and I just need to have a good time regardless. Turns out I worried needlessly. It was an absolutely awesome weekend. I got to know the group a little better and had a great time without too much (other than a little on the first day) fretting about my injection or feeling sad about our situation. And it transpired that some of them knew anyway. Apparently my silly husband had spilled the beans….he just didn’t remember who he’d told! It’s so much easier not having to pretend any more. It’s exhausting trying to make out that everything’s fine when you just want to curl up and cry. Oh, yeah, and side-effects? None. At all. Even two and a half weeks on. Pfft.

Anyway, I’ve digressed. After two weeks of no side-effects, of being ‘normal’ and sane, it’s time for my blood test to check that this stuff is actually working, because you know, the way things happen in our life, no side-effects probably means not working. Again, why was I worrying?! Despite now looking like a complete junkie due to the nurse not being able to find my vein, everything is progressing as it’s supposed to and we await our donor’s day one. That’s when all the real excitement begins.


Happy New Year

And here we are in 2014.  It’s a sunny day and we’ve said goodbye to a devastating 2013 with tears and fireworks.  Good riddance.  I’d love to say the new year will be our year, that things can only improve, that it’s going to be better than the year just gone, but I said all that 12 months ago and look where that got us.  So 2014.  It’s a brand new year and whatever happens will happen.

I’ve had a few comments that this blog is sometimes a hard read, that it’s depressing, or negative, so I thought it time to write a post that somewhat addresses this.  My life is most definitely not a hard slog all the time, like nearly everyone else I have good times and bad.  However this blog is not a documentation of my life as a whole, although who knows, one day it might serve that purpose.  It is a documentation of our struggle to have a child, and that journey is hard, way harder than I ever thought it would be, so naturally (that is if I’m doing my job right) what you read upon this page is sometimes hard.

You sit down to a nice relaxing breakfast, I’m on my way to yet another early morning fertility appointment.  You take a sip of that delicious coffee (the one that I can’t drink due to its potential impact on my fertility), I’m on a hot date with dildocam.  Yep, dildocam, I’m sure you can imagine what that involves if you don’t already know.  Having a nice night out with friends? Check out the non-alcoholic drinks on that beverage list (the list of drinks us infertiles often have to stick to)…..9 out of 10 times there won’t be one.  Now think of the one thing in your life you’d really love to achieve but for reasons outside of your control can’t, and imagine everyone around you talking about how they’ve achieved that very thing, how easy it was, and how fantastic the results are.  Relaxing on a beach or in a park? Take note of how many families are there with their kids and imagine how you would feel if that was all you wanted but couldn’t have.  Feel good?

This journey is physically difficult.  During treatment it involves a hundred and one appointments with specialists, invasive (and sometimes painful) tests and ultrasounds, surgery, constant monitoring and blood draws, and piling multiple chemicals into your body – often accompanied by hideous side effects of some description or another.   And that’s just the beginning, for some of the more unlucky amongst us this voyage involves even more.  I, thankfully, have not had the experience of that ‘more’, and hopefully never will.

Outside of treatment time, we’re trying to give our bodies a fighting chance of being able to conceive.  That means trying to ensure your body is in the best possible condition fertility-wise.  Exercise (but not too much exertion – quite a hard balance to find), eating the right foods at the right times, taking a multitude of supplements, alternative medicines such as acupuncture, the list goes on.  It all may seem excessive to the fertile community reading this but when your body doesn’t perform as it’s supposed to you try everything to bring it back to ‘normal’, often on the recommendation from the medical community.  Now try fitting all of this in around your job and the rest of your day-to-day life.

Yet the physical is the easy part.  As well as being physically challenging, it’s also a complete mind-fuck.  You know when you buy a new car and then suddenly you start seeing that make and model everywhere you drive?  It’s like that with kids.  Everywhere you go there are children, babies, pregnant people, and when I say everywhere I mean EVERYWHERE.  It’s inescapable.  We took a walk to a waterfall miles from anywhere in the middle of the bush, there’s a pregnant lady there at the waterfall.  Out to the pub for New Years Eve, a pregnant woman…and what’s worse, she’s drinking, a lot, vodka and energy drink no less.  To a ‘normal’ person that’s horrifying – we’ve been conditioned to know this is bad for the baby – to an infertile it is heartbreaking.  Why is this woman who is abusing her baby before it’s even born allowed to conceive yet we, who would give that baby everything it could ever need, cannot.

You’ve just sat an exam, one that the rest of your life depends on, and you’re awaiting the results.  Now let’s say you can’t do many of the things you enjoy because they could potentially effect the results of this exam, and this exam is going to dictate whether you get to have the life that you want or whether you’re destined for the sidelines to watch from the outside.  You have two weeks to wait until you know what path your life will take, and all the while you’re surrounded by those who have already passed the exam and are living the high life while unintentionally bragging about it.  Welcome to the two week wait.  The torturous two weeks following treatment (or ovulation) in which you wait to find out if you’re pregnant or not.  You try to distract yourself but it always comes back to the same point, will I have the life I want for myself or will I need to heartbreakingly change my dreams.

For infertiles, everyday things become a challenge.  Meeting new people comes with questions of kids, time is measured by appointments or treatments rather than days of the week, even going to work comes with the constant reminder of what you don’t have – colleagues funny anecdotes about their children, or the thought of ‘if everything had gone to plan I’d be on maternity leave/planning a kids party too right now’.  Your mind is your worst enemy.  The smallest of things can trigger an emotional response, and sometimes it all gets too much.  I was negotiating a change to my job recently and things didn’t entirely go to plan.  Rather than my usual response of ‘take a step back and reassess’ I had a complete meltdown and cried for half a day.  Now on the surface this looks as though I’m an overemotional nutbar, overreacting to what is a seemingly normal job transaction but what the majority of people don’t see is that this job transaction comes at the tail end of another failed IVF cycle (one with atrocious side effects), a cycle that has ended the dream of a biological child for us, a cycle that cost us nearly $12,000 and, because of my defective body, we weren’t able to complete.  Imagine knowing this is all your body’s fault and not being able to change anything.  It’s like building a house of cards or a Jenga tower and slowly pulling out the foundations one by one.  The job hiccup was the last piece that caused the house/tower to come tumbling down.

I don’t know too many infertiles in the flesh but I sure know a plenty online, via Twitter and this blog, and they are some of the strongest and most resilient people I know.  They’re survivors.  So next time you feel like saying we’re a bit negative or the tales of our lives are hard to read, spare a thought for the people actually living this reality.  No, it’s not our entire life summed up in these pages, but the haunting reality of what’s written here has an impact on everything we do, and on who we are as people, good times or bad.  These words are merely our outlet, a way to cope


But who’s counting….

It’s now been a year since I started this blog.  Its first birthday slipped by without my notice, a sign I guess at how lax I have become with my blog posts.  I’d aimed for one a week but at 14 posts off that pace it seems I didn’t quite make it.  Still, it’s been enough to keep me going and, to be honest, 38 posts isn’t half bad.  So what’s happened in a year?  So much and yet at the same time so little.

When this blog was started we’d been trying for Bumble for 597 days.  We were frustrated but hopeful.  We’d sought specialist help and had a plan…a laparoscopy to remove my suspected endometriosis then clomiphene to hopefully end our unexplained infertility.  Needless to say our four cycles of Clomiphene didn’t work, although I’m sure the removal of my endo has certainly taken out one of our obstacles.  The jump from Clomiphene to IVF, bypassing IUI and other treatments was definitely a shock, but once again we were convinced that this would be it, the miracle cure to our plight.  Alas, once again, no result and the options were starting to feel like they were running out.  There was no explanation for why IVF #1 didn’t work, and if we had a similar result from the next IVF cycle then that would most likely be the end of the road, no insight into the problem causing our infertility means no direction for treatment.  So where are we now?

We’re 965 days in and doing IVF round two.

As mentioned in a previous post this starts off with three weeks counterintuitively on the contraceptive pill, before ending that and beginning the stimulation injections.  Throughout most of this time an ovulation inhibiting injection is also taken.  Not knowing what to expect from this longer cycle I went in with much the same mindset as I had with the first IVF cycle, except this time my expectations weren’t so high; I am somewhat prepared for this not to be the miracle cure.  Overall the pill was fine, and the stimulation injections are much the same as last time.  I’m on a slightly higher dose but it doesn’t seem to be causing me any issues.  The thing that IS causing me grief is the nasty injection to stop me ovulating.

Each morning I inject what I like to call ‘Lucky Dip Lucrin’.  This is also known at Lupron for those of you in the Northern Hemisphere.  I name it ‘Lucky Dip Lucrin’ because you never know what you’re going to get on any given day.  I do my injection at about 7:30am each day and I can time it pretty much to the minute that exactly two hours later I want to cry.  After that it’s a wait-and-see process as to what horrible side effects I’m going to get for the day.  Most days I have a headache – the lucky dip side of this whether I have it from 2 hours after my Lucrin shot or whether it develops later in the day.  Some days, although thankfully not many, I feel nauseous.  Not nauseous enough to actually throw up but nauseous enough that I sit at my desk pondering whether I could make it to the toilet in time if I had to.  Lately I’ve also been suffering from vertigo from it which makes working extremely difficult.  And let’s not even start on my dodgy gut!  I’ve also been insanely tired but this is one side effect I don’t mind so much.  I hate being tired and it’s a struggle to get through the day sometimes but I figure functioning in the equivalent of a sleep deprived state is good practice for if I ever do become a parent, so this is one side effect that makes me feel better about this whole process.

Coming towards the end of the stimulation part of the cycle I’m finding it harder and harder to function as a human being.  I guess this has to do with the drugs building up in my system or something but the last few days have been really tough.  An email that should take me 5 minutes to write is taking a couple of hours (due to an inability to concentrate on one thing for a sustained period of time), and my vertigo is so bad I often have to sit with my head in my hands, eyes closed (trying not to move) at frequent intervals throughout the day.  I know others who have gone home ‘sick’ when feeling the same but I refuse to let this defeat me.  This IVF cycle is a path I have chosen to take and my work should not suffer more than it already does because of it.  At least the end is now in sight.

Scans and blood tests are looking good.  My follicles have been a little slower in developing than last time but Dr Google tells me that this is not uncommon with a long protocol cycle.   All going well my egg collection should be at the end of this week.  Fingers crossed we get the miracle we’ve been hoping for all this time.


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