Kia ora tatou – welcome to Infertility Info for Kiwis

September 23rd, 2009

This site is for couples and singles struggling with infertility, especially those in my home, Aotearoa New Zealand.

Maybe you have been trying to conceive (ttc) naturally for a while and want to improve your odds; maybe you are trying alternative medicines such as acupuncture and naturopathy; maybe you are seeing a specialist and dealing with the IUI or IVF rollercoaster. Whatever your story, welcome to the site! 🙂

Just a disclaimer: I have put this site together as a patient who has gone through the struggle and learned a lot along the way, not as a specialist or doctor. Having said that, I do have a background in science and a Ph.D., so I know how to evaluate research and talk to my doctor about it as an equal.

I know, being an educated Pakeha (white) chick with a background like that makes it easier for me than for so many of my fellow ttc-ers. That is a huge privilege, and I wanted to use it for good. What I’m trying to do here is get rid of the technical jargon and help you understand what I did, but in plain language, so you can work with a specialist as genuine partners.

This site is not intended to substitute for medical advice. Rather, it is intended to help you ask good questions and have fruitful discussions with your healthcare practitioner(s) so that you can be a more active partner in decisions that affect your life and your family.

Knowledge is power!!

Take some of that knowledge with you to read on your iPad, PC, or phone! Click the pic below to find the minibook on Amazon for just US 99c.

 

The importance of selenium for NZ infertility patients

October 23rd, 2010

It’s a known fact that New Zealand soils are seriously deficient in selenium, a trace mineral our bodies need. When I went to see a fertility naturopath, she immediately put me on a bunch of supplements including Vitamin E with Selenium. Apparently eating two Brazil nuts per day will provide you with enough Selenium, so it’s considered generally sensible advice to either eat those or take a supplement.

Here’s another angle on the selenium connection from a kiwi woman from a farming family:

I have had a couple of people PM me about using selenium and I thought others may be interested.

Firstly I make no promises, this is completely unscientific and I dont want to give people false hope.

We are described as unexplained infertility. Our fertility specialist has always said there is no medical reason why we cant conceive naturally. Of course 5 years later, 6 IVFs and lots of heartache you stop believing this. Though we did manage 3 pregnancies that ended in miscarriages following IVFs.

So a few months ago after our last miscarriage my mother sat me down and said I needed to take selenium. I am not one to take things without good reason so rolled my eyes and said ‘yeah yeah thanks mum’. However she told me a story about how 20 years ago on her sheep farm she was told to put selenium on her pastures. (My mother farmed for years on her own after my father died so everyone was keen to tell her what she should do). She says that as a direct result of that her lambing percentages increased by up to 15%. There is plenty of research out there to say NZ soils are selenium deficient and selenium assists in animal health and fertility. Anyway I did some research about selenium assisting human fertility and couldnt find anything other than assisting in male fertility (which has never been a problem for us).

Anyway we both started taking it (I thought we had nothing to lose) and the rest is history. We were about to start our 7th and last IVF, and had our names on the egg donor list when I discovered I was pregnant….naturally. Unbeleivable. Never before had this happened. And touch wood it is still going okay.

So read into this what you want. Who knows if the selenium was the factor that changed things. It might be just luck!

Interestingly since we have started to tell some of our farming friends about our pregnancy we have had a few tell us about how they use selenium for their animals’ fertiltiy.

I suggest if anyone wants to take selenium you should check with your fertility specialist (I didn’t, but then I never thought it would work either). I have since mentioned to my fertility specialist, fertility nurses, midwife and obs and all have given me that ‘yes well we’ll let you believe that’ look! There being no research doesn’t help but who knows…worth a try anyway.

We took 100mcg of Red Seal Selenium ACE purchased from the supermarket for about $12 for 40 tabs and took one a day each. Just a note of warning that selenium is very poisonous if you take too much.

Interesting, huh? Food for thought – and possibly food for fertility!

We all know there are no silver bullets in this game, but it many ways it’s about trying to get all the stars aligned so we have the best possible chance. So, here’s one more star that couples struggling with infertility might bring into alignment to see if it helps eliminate one more obstacle. Another for the “won’t hurt, might help” file.

What seems to work best for which poor responders and women over 40?

June 3rd, 2010

This is one of those areas where we’d hope the empirical literature would be able to tell us what works for whom and under what conditions. But unfortunately poor responders and women over 40 – and particularly poor responders over 40 – are a relatively small group and rather neglected in the research (JMHO). So, what can we draw on instead?

This isn’t particularly scientific, but if you look at some of the research that’s been conducted over the years and combine this with informal sources such as the Over 40 High FSH Board‘s Timeline post (click here or search for “timeline” to find the latest) and also the high FSH google stats page, and also based on what I observed (IVF successes and failures) over many years on those high FSH boards, here’s what I concluded:

  1. There didn’t seem to be any pattern about whether the flare protocol, the antagonist protocol, or Mini IVF worked best – it’s basically a crap shoot. You just have to try them and see.
  2. The high stim success cases (live births) were generally women under 40 with a lot of antral follicles. The few over 40 exceptions tended to have higher AFCs (>5).
  3. The VAST majority of over 40 IVF success cases were low stim. [Lots of natural conceptions too, but of course there are many more people ttc naturally than with IVF, so it’s hard to infer whether, say, low stim IVF is more or less effective per cycle than ttc naturally – High FSH specialist Dr. Jerome Check thinks IVF gives high FSHers 2.5 times better odds for that cycle cf ttc naturally in your late 30s and early 40s.]
  4. Often on high stims you can get more follicles and sometimes more eggs retrieved, but the number of embryos generally seemed to be the same from either high or low stim (I’m excluding natural and boost protocols from low stim here). In other words, on high stims you often get more empty follies and/or lower fert rates.
  5. Those of us over 40 gals who’ve tried both high and low stim have quite often seen a difference in eyeballable embryo quality – just one example, but check out my high and low stim embie pics and see for yourself

So … based on what I’ve seen, my conclusions for poor responders/high FSHers/low AMHers were:

  • Under 40 and with OK AFC –> give medium-high stims a try first (say, 450-600IU)
  • Over 40 but a pretty decent AFC (say, consistently >5) OR under 40 with a low AFC –> try medium stims first (225-375IU)
  • Over 40 with a low AFC and FSH not through the roof –> try low stim (75-150IU)
  • Really excessively high FSH or a system that goes wacky with drugs –> go natural (BD or IVF) or try a ‘boost’ cycle (start natural, add tiny 75IU boost IF needed based on monitoring)

Not very scientific, but FWIW, that’s what I concluded in the end (after starting medium/high stim at age 40 and eventually listening to my wise board buddies and Jerome Check – and trying low stim).

Please note that this post is directed at couples and women who do NOT at this point want to consider donor eggs, but want to try and get a handle on what might be the best approach to try with their own eggs.

Other posts of potential interest:

What are the main IVF options for poor responders?

June 1st, 2010

In an earlier post I covered what a high FSH/low AMH reading means, what else to ask for in the way of diagnostic investigation, and the basics about whether this is a ‘no hope’ diagnosis or not.

I’ll talk in this post about the main IVF protocol options for women with high FSH/low AMH/DOR and poor responders, but will be back sometime soon with a post about other lower-cost options for those not willing or able to do [more] IVF.

IVF Protocol Options

OK, first let’s talk about protocols. As I mentioned in the post about the main about IVF protocols used in New Zealand, there are basically three possible protocols that are used for poor responders, and 1. The “long protocol” is NOT one of them. The main options for poor responders are:

2. The microdose flare – usual starting protocol for high FSHers and women over 40. It’s less likely to oversuppress poor responders than the long protocol.

Usually but not always starts with a course of BCPs (birth control pills) for about three weeks, then you stop for a couple of days, then start your microdose course of Buserelin (this gives your ovaries a kickstart or ‘flare’), then a day or two later you start your stims (Gonal F injections). As with the long protocol, you stim for about 10 days with scans and blood tests every 2-3 days. When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

3. The antagonist protocol another option for high FSHers, poor responders and older women. Often the first choice protocol for these women, but in NZ it’s typically tried only after the flare protocol has given a weak response because the drugs are cheaper for the flare.

Usually starts with a mild pre-cycle suppression course of estradiol valerate (E2V) from CD21 or 7dpo the previous cycle (you can ttc on your own the previous cycle; this won’t affect a pregnancy); when AF (your period) arrives this is counted as Day 1 and you may be asked to go in for a baseline scan to check that you have no cysts, your antral follicles are ready to go and no big dominant follicles; on CD2 you start stimming, having bloods and scans every 2-3 days. When your lead follicle reaches 14mm, you start Cetrotide (the antagonist that stops you ovulating too soon). When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

4. The Modified Colorado protocol (a.k.a. The “Wellington”)

“As an adjunct to standard IVF or TER for patients with recurrent implantation failure who have had no problems identified following a recurrent implantation failure screen. The Wellington is a treatment that in theory will improve the lining of the uterus to aid implantation of the embryo.”

Stim Options

OK, having discussed with your specialist which protocol to try first – and don’t forget to ask what he/she would try next if the first one works very poorly! – the next question to discuss is what to use to stimulate your ovaries. The usual default is to start with straight Gonal F; if that doesn’t work well, you might raise the possibility of adding something else as well. The options are:

  1. Straight Gonal F (or Puregon) – this is pure FSH
  2. Combination of Gonal F (or Puregon) and Luveris (pure LH)
  3. Combination of clomiphene (Clomid) and Gonal F or Puregon

Dose Options

There are two diametrically opposed schools of thought among specialists when it comes to how to treat poor responders. They are basically:

1. SHOUTING: High FSH means your ovaries do not respond well to IVF stim drugs. It’s like having ovaries that are hard of hearing when it comes to stim drugs’ message, so the best strategy is to shout at them very loudly (i.e. give you a high dose of stims). This might just get you an extra egg or two. IVF is a numbers game, so more eggs improve your odds.

2. Coaxing: Women with high FSH often have eggs that are more fragile, especially if they are ‘older’ as well. High doses of stims simply ‘fry’ those eggs. If you have high FSH/low AMH, you are going to be a poor responder, so it’s a waste of time going after quantity; the best strategy is to go for quality. You can’t actually improve egg quality per se, but you can avoid damaging eggs with high doses of stims by using very low stim protocols. ‘Low stim’ usually means 75-150IU/day. [I’ll write more sometime about the details of some interesting low-stim protocols used overseas.]

Which of these makes more sense for you? Well, the body of research is building but still hasn’t yielded a definitive answer. My own observations over several years (talking to high FSH women and watching who achieved success and who didn’t, plus reading the empirical research) have been that the only high FSH successes on high stim IVF seem to be women under the age of 40. The vast majority of high FSH IVF successes over age 40 seem to be low stim (with a few exceptions). Younger women with high FSH can also do well on low stims. This isn’t scientific research; just my own observations based on a lot of cases I have known about internationally.

Having said that, the New Zealand definition of ‘max stims’ (usually 300IU) is actually more like ‘medium stims’ internationally. In the States, ‘high stim’ generally means 600IU or more, and there are (believe it or not) some total egg-frying protocols that crank it all the way up to 900IU.

My own hunch is that if you are under 40 OR if you have a reasonably decent antral follicle count, consider giving 300IU (or 450IU) a shot. But if that doesn’t get you decent numbers or,  if embryo quality looks poor, consider a switch to low stim for your next try.

If you’re self-pay, there’s a cost advantage to low stims as well.

I’ve got high FSH/low AMH … what does it mean?

May 22nd, 2010

Ohhhh boy, I know this topic better than just about any other, as you may have seen from my story. I remember finally plucking up the courage to see a fertility specialist, being sent for blood tests, immediately getting online and googling what all the tests were and how to interpret the results … and fast coming to the conclusion that the absolute worst case scenario was an FSH over 10. “The cruelest number of all” was how one site described it.

If you’ve clocked in with elevated FSH (usually defined as any reading >10) or OK FSH but elevated E2 (>150 in NZ units, or >40 in U.S. units) or low AMH (<14 pmol/l in NZ units, or 2ng/ml in US units), then you have probably been visiting Dr. Google and have come up with a very depressing view of your chances. Your specialist may also have told you this is not good news. And no, it’s not, but here are a few snippets of information I’ve been able to glean in my travels.

First, let’s blow a few myths out of the water …

  • Your age is far more important than your FSH – if you are 33 years old with an FSH of 20, then you do NOT have the eggs of a 43-year-old. You have the eggs of a 33-year-old, just fewer of them than your average 33-year-old.
  • If your FSH fluctuates and is sometimes high and sometimes normal (with normal E2 as well), then your prognosis is about the same as if your FSH was consistently slightly elevated (say, low teens).
  • Even if your FSH reading is quite high (say, 30 or 40 or more), this alone does NOT mean you are in menopause. Menopause is defined as not ovulating and no periods for 12 months. If you still get AF – and particularly if you are still ovulating! – you are definitely NOT in menopause!
  • If you do get pregnant, your chances of miscarriage are just the same as anyone else your age – high FSH does not increase the chances of aneuploidy or miscarriage (yes, this has been studied!).

What does high FSH/low AMH mean?

  • You have diminished ovarian reserve (DOR). This means you are running low on eggs and are likely to hit menopause sooner than average (the average is age 51). How much sooner is very hard to say – it could be 10 years away or more; it could be much sooner.
  • You are likely to be a “poor responder” to IVF stimulation drugs. In other words, if you try IVF, you are likely to produce fewer eggs than most women and your chances of pregnancy will be lower because of the smaller numbers.

How can I reduce my FSH?

The short answer to this is that it’s a wild goose chase. Nothing much works to get the number down consistently, but the more important point is that even if you did, it doesn’t change the fact that you are low on eggs. Don’t waste your energy chasing a lower number because that isn’t going to get you pregnant. What you do know for sure is that you are short on time, so put your energies into finding the golden egg(s) from those that are left.

Having said that, it is possible to artificially suppress FSH using either Buserelin (an agonist), birth control pills or some form of estrogen (such as estradiol valerate). This is usually done prior to starting an IVF cycle and is known as ‘pre-cycle suppression’. More on that in another post …

Should I believe just one reading?

It’s never a good idea to make major decisions based on one blood test result, or even on two or three tests that confirm a similar result. There are some other tests of ovarian reserve, and it’s a good idea to ask for them:

  • FSH – Follicle Stimulating Hormone – should always be done with a test for estrogen as well (otherwise it’s uninterpretable); should be done on CD2-3 of cycle, although some drs will do it CD1-4.
  • AMH – Anti-Mullarian Hormone – may be done at any time during the cycle
  • AFC – antral follicle count – this is a vaginal ultrasound,  usually done early in your cycle, where the dr counts the number of ‘resting’ or ‘antral’ follicles that are candidates for selection at the beginning of a cycle. This gives you a  very rough ballpark of the maximum number of eggs you might get on the right IVF stimulation protocol.

Is there any hope for women with high FSH not using donor eggs?

High FSH does present some difficult challenges. However, there have been success cases, lots of them, especially among those with just mildly elevated FSH (in the teens). At higher levels (FSH in the 20s, 30s and 40s), we still see successes, but just in lower numbers, and the success cases show a definite drop-off in older women. There have been some rare cases of success in extremely high FSH cases – two I know of personally were a 28-year-old with FSH 164 (yes, that’s a hundred and sixty-four) and another with FSH clocking up to 110 who had three children over several years (including the last one at 41).

Those interested in poring over some unscientifically documented success cases should check out the following links:

I’ll follow this up soon with some more information on treatment options for high FSHers, including natural approaches and alternative medicine as well as different IVF protocols that seem to work best for high FSHers.

In the meantime, a great resource to check out is my friend PJ’s site: http://highfshinfo.com

What is assisted hatching?

May 1st, 2010

Assisted hatching is an optional extra procedure used in IVF where a small hole is made in the shell (or ‘zona’) of a Day 3 embryo. This is supposed to help (in some cases) the embryo ‘hatch’ out of its shell and transform itself into a blastocyst (usually on Day 5).

Probably the best site to get a clear understanding of assisted hatching is the one from the Advanced Fertility Center of Chicago, which shows in great detail how the hatching process works, including a pic of an embryo actually in the process of hatching to become a fully hatched blastocyst. Cool!

In New Zealand assisted hatching is not part of the default IVF protocol, so you would need to ask your specialist about it.

My understanding is that public funding won’t cover assisted hatching (I could be wrong about this – please chime in if you know of criteria for eligibility). But, if you were doing a publicly funded cycle and your specialist agreed it might be a good idea, you could presumably pay for it out of pocket (it’s a few hundred dollars).

If you are a self-pay patient, obviously the choice is with you and your specialist, so ask. However (and someone please update me if this is no longer the case), if you have the OK to transfer more than 2 embies, apparently the clinics are not allowed to do AH on more than two. I can’t fathom the reasoning on that (especially for women over 42), but there you go … Minor trivia, but worth knowing in advance (if you’re like me, you hate surprises cropping up during the cycle).

Just to give a broader perspective, in the States, where patients are either paid for by insurance or out of pocket, assisted hatching (AH) seems to be used more widely. The Advanced Fertility Center of Chicago says they do it on all embryos, but they also offer the following useful list of criteria:

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

For the original page, see http://www.advancedfertility.com/hatching.htm

I’m pretty sure that assisted hatching can be used whether you are doing a 3-day or a 5-day transfer, but generally not for 2-day transfers (the embryologists say the embryo is usually too small then and there’s a risk it could break up if the zona is punctured). With a 3-day transfer, they will do this immediately before they put your embies back. With  a blast (5-day) transfer they would presumably do the AH on day 3 before putting the embryos back for their last two days of development. Anyway, these are just a few things to discuss with your specialist.

As for risks, my understanding there is a very very small increased likelihood of conjoined twins if assisted hatching is used. My own specialist told me that, although this was statistically true, the reality was that the increased chances are so miniscule that they don’t really have practical significance.

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

Conflicting expert opinions – how do I know who’s right?

April 10th, 2010

So, you finally plucked up the courage to go for a second opinion (see also When and how should I seek a second opinion?) and guess what – now you have two or more well-qualified and plausible experts with compelling arguments telling you to do the exact opposite. Maybe one cites empirical research and another doesn’t; maybe they all cite different research. Maybe one sides with the ‘mainstream’ while the others are mavericks – who’s more credible? Who should you trust?

Here’s a classic example encountered by women in their late 30s and 40s with elevated FSH or low AMH (which means they have diminished ovarian reserve – very few eggs left, on the fast track to early menopause). [This example may not relate to your case specifically, but the reflections about how to deal with it are definitely generalisable.]

Specialist A: Once your Day 2/3 FSH is over [insert cut-off; some say 10, some say 12, some say 15, some say 20] the odds of pregnancy through IVF are so incredibly low that IVF is a waste of time altogether, so we would actually not treat you unless you plan to use donor eggs. Just move on already!

Specialist B: Your FSH is elevated, which means you will be a poor responder to stims (Gonal F, etc) and your odds will be lower than other patients your age. It’s like your ovaries are old and going deaf, so we have to give you a very high dose of stims (i.e. ‘shout’ at your ovaries) to get them to wake up and produce any eggs at all. So, I would recommend we put you on maximum dose stims and see what happens. If that doesn’t work we will try mega mega doses.

Specialist C: Your FSH is elevated, you will be a poor responder, but actually, large doses of stims for women like you will often cause your ovaries to shut down and not respond at all. If they do respond, the dose is so high that you will end up with fried eggs that are unlikely to result in a live birth anyway. No, your ovaries are like an old squeaky violin that has to be coaxed gently into life so that it sings the sweetest tune  it possibly can. I recommend a very low-stim IVF, IUI or TI (timed intercourse) cycle with either very low stims right from the start, or just starting with no stims and letting your own [already elevated] FSH drive follicle growth before adding a ‘tiny boost’ to help things on their way.

Yes, intelligent people do hold different views. The field is still growing and not everything is cut-and-dried (and  actually, never will be). They all have theory and evidence to back their explanations …

Specialist A will cite a ton of empirical research showing the inverse correlation between FSH levels and IVF response (number of eggs produced) and success rates. No argument with that.

Specialist B will cite studies showing that the higher the dose, the more eggs patients produce, and the more eggs you retrieve the higher the success rates. It’s a numbers game.

Specialist C will say ah yes, but what those studies don’t show (but mine do) is that, although you get more eggs from higher stims, in older women and those with high FSH, those eggs are of lower quality, less likely to fertilise, and most importantly, less likely to result in live births.

They are all speaking the truth based on what they have seen and read; they all have evidence and experience to back their claims. So, how do we weigh up conflicting arguments and figure out what makes the most sense for us?

First, let’s talk about the big studies (either randomised experimental trials or retrospective studies) showing that Protocol X works (or, helps) better than protocol Y. These are very important to understand, but what YOU need to consider is not “does it help” on AVERAGE across a large study of all sorts of different women; the real question to have in mind when you read (or, discuss with your dr) such research is WHOM does it help (what age, dx, individual characteristics), and under what conditions? And, will it help ME with my unique constellation of age, treatment history, diagnosis and other characteristics?

There are some aspects of fertility treatment that are so nuanced, unpredictable and idiosyncratic that the reality is NO-ONE is ever going to get “the” answer through large study research. Once you’re past the relatively well-established big picture stuff and trying to individualise protocols based on what you see and what you’ve seen in the past, it’s less about big picture science and hypothesis testing and more about human judgement and pattern recognition.

When we’re in this territory, fertility treatment is less a “science” and more of an “art” or a “craft”. You’re having to trust pattern recognition, judgement, intuition and instincts because the research just isn’t there to the level of detail you’d need to be able to make a call. Also, many of the cutting-edge treatments have no more than a plausible theory and a few success cases; the research needed to fully test them is still in progress or may be years away or may never be done because they help such a small segment of the ttc population – but they may still help (see also New and “untested” treatments). Just about all of my ttc journey was in that murky domain -  I was too specific a mix of age, diagnosis and treatment history for enough large studies to have been conducted to clearly indicate what would work in my case. There were no easy answers – there wasn’t a clear right or wrong because the research out there could only predict what would happen across a large group (that included many women NOT like me), not what would happen in MY case (or cases very similar to mine).

When you’re in instinct and judgement and pattern-recognition territory, the only things you can do are arm yourself with as much knowledge as you can muster, listen to the instincts and judgement of the people who have had more experience with cases specifically like your own, and listen to your own instincts and debate these back and forth with your specialist(s). It’s a crap-shoot, but some people have a knack for this stuff …

Or, the simple version for the example above (please just insert your own dilemma and the answer is likely the same): high stims work for some people; low stims work better for others. Which are you? Well, you won’t know until you try because the studies have been done on a huge range of women, only a fraction of whom are like you in various ways – and none of them are exactly like you. So, research like crazy to try and figure out what seems promising for women and couples most like you, and when it’s still not clear how to choose among various plausible options on your shortlist, go with your gut.

See also: New and “untested” treatments for some thoughts about which new-fangled ideas to consider seriously.

How do we know when to move on?

April 9th, 2010

“Moving on” can mean a lot of different things:

  • stopping IUI or IVF and switching to ttc naturally and/or with alternative medicine
  • opting for donor egg IVF (or donor sperm IUI or IVF) instead of trying more with your own eggs (or sperm)
  • trying with donor embryos (these are frozen embryos left over from other couples’ IVF cycles who have had success and have finished building their families)
  • pursuing adoption (domestic or international) or foster parenting
  • deciding to live child-free or (in the case of secondary infertility) with just the one(s) you have

But how do we know when it’s time to move on to the next option? And, when should we (and when should we NOT) be making those choices?

It might help if I share a bit of my story from the very lowest points of my ttc journey.

I think one of the worst parts of my whole ttc journey was right when we found out that our miracle natural conception after 2 years ttc#2 was in fact, at 7 weeks, a blighted ovum. At that point I was almost 42, where they say your fertility falls off a cliff, and I really felt like this pregnancy was my last chance slipping through my fingers. I had six failed IVFs under my belt, 2 cancelled for poor response, 4 that had gone to egg collection, a total of 9 embies transferred, no leftover frosties, 4-5 other natural conceptions that were chem pgs (mostly) and now this 7-week miscarriage.

Every BFN and especially every loss was a major low point for me. Not only did life/reality totally suck; estrogen levels at the end of a failed cycle or failed pregnancy are in freefall and that makes anyone feel really really crappy. So, the one thing I learned is NO negative decision making while climbing out of the vortex. But once out …

It’s a very personal decision about how much more of this you can take. The costs are high on every level (physical, emotional, financial), and you lose major chunks of your life clawing through this stuff. Your career suffers, relationships with friends and family suffer, and if you have one or more children already there’s this awful feeling that you are losing precious time with them while you are consumed with cycles and blood tests and scans and peesticks and phantom pregnancy symptoms and researching next options. And infecting them with the sadness and depression that comes with a long struggle with infertility.

As one of my NZ board buddies pointed out, it is really important to sit down with your partner regularly through the ttc process (and with a good counsellor, if you choose) and ask yourselves some very difficult questions such as:

  • What does my partner want, what do I want, how do we resolve things if there are different goals? (this can change at different stages of the process)
  • What’s the impact of this treatment (or yet another treatment) on our relationship? How do we stay strong together as a couple?
  • What’s the impact on our lives if we don’t have children after [insert number of] IVF/treatments? What’s the vision for our future without children?
  • [and I’d add one for the secondary IFers] What’s the impact of this treatment (or yet another treatment) on any child(ren) we have? What is the cost to their quality of life of having their parents going through this gruelling process? How well are we ensuring they get the love and nurturing they need while we try for a sibling? How long/often can we keep trying before the negative impact on our child(ren) makes it no longer worth it?

The financial drain is very stressful on top of everything else. It was hard to take on much work while having to avoid travel during only partially predictable cycle dates, so income can be down anyway. We were lucky to get some help from family and the bank manager, but everyone has a limit to how far they can stretch before they are really in trouble. My philosophy was that I could make money after menopause but not eggs – and that any resulting child would cost far more over a lifetime than a few IVFs. I needed to get to 50 with no more regrets, whichever way it went. So we kept on, making the decision after each cycle – at least a couple of weeks after the BFN or the D&C (no sooner).

For me, the decision about whether to move on was all about whether I thought we were out of plausible ideas and just spinning on some hamster wheel. But even after 6 IVFs I still felt like we had ideas to try that we hadn’t tried before. Thankfully we had a specialist who would work with us to try anything plausible. And go figure, after no success in 2 years age 40 to 42+ (and high FSH to boot), IVF#7 at age 42.3 gave us not just one baby but fraternal twins.

Unfortunately, though, success isn’t going to be the outcome for everyone who persists. I knew I had to be at peace with eventual failure. I wanted to look back after menopause and know that we had tried everything that we could, and that we did it without sacrificing our relationship with the one we were already so lucky to have (and who we were told would never happen either).

Early on in the process, after my first IVF at age 40 was unceremoniously cancelled for ZERO response, my first thought was “Oh well, that protocol (microdose flare) didn’t work; now there’s really only one other for me to try (antagonist). If that’s a zero response too, then that’s that for IVF. Simple.” If that had happened, the choice would have been very clear to me – ditch the IVF and try naturally with acupuncture, herbs and supplements (we’d 99% decided against the other family building options already; my tubes were fine and we had only mild MFI). In some ways that scenario felt like a relief because it was unambiguous and the treatment less taxing on many levels. But on IVF#2 I did actually GET a response, though not a great one. From then it was a case of hunting for the Goldilocks (just right) protocol, and giving up on IVF once it was clear we’d exhausted all the plausible ideas (or our emotional capacity for going through the process).

It’s a very personal decision for each person or couple about when to move on and which options you would consider. My advice (and I know a lot of people would advise the exact opposite) would be to NOT decide in advance how many cycles you’ll do or whether a particular cycle is definitely your last shot at anything – it puts a LOT of stress on the so-called “last” cycle.

Another very good read on this topic is Janey’s post on the Fertility NZ blog. Janey’s been through the IVF mill and is reaching the end of the journey, but unfortunately without a baby in her arms. Here are some snippets from her very real reflections …

We are all at such individual, personal stages in our journey with creating our own families. This could be trying IVF for the first time, or the sixth because you’re a “poor responder” – how dare they label us that – or having had a miscarriage, or having realised that it’s time to accept our shape of ‘family’ might include dogs, step children, and a trips to India. I’m at the later end of the spectrum. It’s immense.

I no longer want to hear about people getting pregnant, or want to support another friend through IVF. It’s too heartbreaking. The lovely people at Fertility NZ have compassionately identified this, and are saying, “That’s okay”. How nice to feel valid, in a journey that is anything but valid or fair.

=> Read Janey’s whole post and the 30+ comments from women in the same boat.

As another board buddy said, “Getting on the infertility treadmill is easy – its when to hop off that is the problem.” So true.

We did IVF but had heaps of empty follicles – help!

April 5th, 2010

Some of us do IVF, go for those scans and see hardly any follicles after all those injections. Others are relieved to see a healthy crop developing as they go through their cycles. Unfortunately, the number of follicles (or “follies”) doesn’t necessarily equate to the number of eggs collected. And for some women, a huge proportion of the follies are ’empty’. This is sooo frustrating after seeing all those follies on the screen and usually having a fantastic E2 (estrogen level) to match.

There is such a thing as “empty follicle syndrome”, but unfortunately it’s still not all that well understood, and there are various theories …

  1. The most common explanation given by the specialists is that egg maturity and quality are related to how easy they are to get out. Those that are flushed out are lower quality than those that came out easily. ‘Empty’ follicles may not actually be empty; they may just contain very poor quality eggs. OK, there’s obviously a heavy element of truth to this (i.e. it’s a known fact about eggs in general), but the big question, of course, is whether (and how much) it applies in YOUR case. It probably does, to some extent, in just about all cases of empty follicle syndrome. But that’s actually a “There’s nothing we can do about it” diagnosis, and not much use unless you are looking for  a reason to switch to donor eggs or give up altogether. So, the following are some other plausible theories that may or may not apply, but many of which CAN be addressed.
  2. One theory is that you got a dud trigger shot. It’s rare, but it can happen. And it’s unlikely to happen again. But if you want to be absolutely sure, some women use a double trigger shot the next time. This is when you inject not one but TWO vials of Ovidrel (the usual trigger used in NZ), one after the other. Very important: The vials should come from two different batches (check the batch numbers on the packet before signing them out and taking them home – you can’t return injectable drugs for exchange or refund). I’ve not seen any mention that this could have any adverse effect on the egg quality – it’ll cost you some $$ for one more vial of trigger (but this is cheaper than one more IVF cycle and a lot cheaper than the baby once he/she arrives!), but apart from that, it’s a “won’t hurt, might help” measure as far as I can tell. But ask your dr.
  3. Another theory floated a lot is that you may have ovulated just before retrieval, but not so long before that they would have seen collapsed follies. The remedy for this, if true (and it’s very hard to tell) is to schedule your egg collection just a bit earlier – say, 34 to 35 hours after trigger, instead of the usual 36. Reasons to hesitate about doing this might be if several of the eggs that were retrieved were immature – collecting early could exacerbate this problem.
  4. A rather delicate theory to probably NOT raise with your specialist is that the person doing the retrieval wasn’t very skilled. Yes, well, obviously a possibility, but hard to tell as a patient, and there’s no way you’ll get an admission about this one!! If you’ve had several cycles with ’empty’ follies, was it the same person doing the procedure each time?
  5. OK, time to start thinking outside the very simple boxes outlined above. One possibility is that the protocol disagrees with you – gets you follies but most of them are ‘decoys’. Now, you won’t get far on this one if you are under one of NZ’s one-size-fits-all specialists. Obviously, there are some cases where a change in protocol might be risky (e.g. greater risk of overstimulation, OHSS), but personally, I couldn’t bear to go into a new cycle on the exact same protocol as a failed one, so ask lots of questions about alternatives – and see also the post: What are the main IVF protocols used in NZ? The other protocol-related thing to ask about is what stims are being used. In NZ, just about everyone gets put on straight FSH (Gonal F or Puregon), but some specialists will add some LH (e.g. Luveris) into the mix. This seems to help some women with egg quantity or quality or both; others seem to do better on straight FSH.
  6. Some fertility specialists say that if your eggs are overcooked, i.e. if you stim too long before triggering and the egg over-ripens, then the resulting egg will stick to the follicle lining and not come out easily. The same is said about eggs that are ‘undercooked’ (i.e. if you triggered too early and the egg is not yet mature). Although there is some empirical research on the best time to trigger based on follicle size, it’s become quite clear to me (after listening to others’ experiences) that one size does not fit all, and some women need to trigger earlier than the norm, some a bit later.
  7. The other possibility is that maybe your ovaries are of the “less is more” variety, so that if you halve your dose you may get fewer follies but the eggs in them are likely to be (a) really there and (b) better quality. I haven’t seen a lot of research on the latter, but I have talked to a low-stim specialist about this in some depth, and also to several women who swear they get far fewer empty follies when they are on a much lower dose. [And, I suppose my experience was similar numbers but better embryo quality, so I’m a fan of the low-dose option in general.] Internationally there is a fast-growing interest in the reproductive endocrinology (fertility specialists) community about low-stim and natural approaches to IVF.One of the more interesting recent innovations in IVF is in vitro maturation (IVM), where the eggs are removed from the follicles while immature and then matured in the lab. This is nil to near-nil stims technology. Last I heard – in a Nov 2007 National Radio interview with Dr. Simon Kelly (Fertility Associates Auckland) it hadn’t been approved by the ethics people, but it may be by now, or that  may be coming soon. If it sounds interesting, get yourself a consultation with Simon – he did a post-doc fellowship at McGill in Montreal, where IVM was pioneered.

OK, there’s a big laundry list of possibilities here. My own experience grappling with infertility has taught me to push back quite hard if only the “we can’t do anything about it – you just have bad eggs” explanation is being offered. OK, the bad eggs thing may be true (and in my case it certainly was, since I was IVFing over 40 and with high FSH!), but that doesn’t mean there aren’t some other treatable explanations that are also in play. There are quite a few non-drastic options here to tinker with the protocol, and IMHO they are well worth discussing seriously with your dr. If he or she is reluctant, make sure you ask whether your specialist thinks this is likely to be risky or harmful in some way, or whether they think it’s relatively harmless but just unlikely to be effective. If it’s the latter, and if your instincts are telling you it makes sense, then ask to try it.

The Biological Clock: Cool interactive tool from Fertility Associates

March 29th, 2010

Wondering how much time you have left to dilly-dally before seeking treatment? Fertility Associates has just put out a very cool, interactive ‘Biological Clock’ to show you the odds of getting pregnant naturally vs. IVF at your age and beyond, and how long you should wait before seeking treatment depending on your age and how long you’ve been trying.

Of course, the odds vary a lot depending on your specific diagnosis. If you have blocked tubes or serious male factor infertility, then there’s no point trying naturally at all. If you’ve got high FSH, low AMH or diminished ovarian reserve (DOR), step on the gas sooner rather than later!

My own experience is that if there’s a little voice inside your head wondering if you need some help to get pregnant, listen to that voice sooner rather than later! Don’t let precious time tick by; don’t put up with a laissez-faire attitude from your GP or OB; if you need to, find a few $$ and book yourself a private consultation with a fertility clinic. It doesn’t rule you out for public funding if you do need it.

Can I get travel insurance with an IVF pregnancy?

February 10th, 2010

So you’ve been through (or, are about to go through) the white knuckle ride of IVF cycles and all you desperately need at this point (apart from a 40-week pregnancy) is a nice, relaxing break overseas on some tropical island. But you have a cycle coming up and there’s a slight chance that this one could actually work. Will this cause a problem with travel insurance?

For most “normal” people – you know, the ones who just have sex with their spouses and get pregnant (I know, that’s just sooo last millennium!) – getting pregnant before you leave isn’t a problem and isn’t considered a “pre-existing condition” or anything you could be excluded for. Well, guess what, if you’re unlucky enough to need IVF to conceive, do some very serious shopping around before you buy travel insurance. Here’s why …

Here’s a quick summary of what I’ve been able to find out. Some of it is second hand info though, so check directly with providers before buying. The main purpose here is to alert you to the wide variation in policies so you can ask good questions and choose wisely.

Southern Cross:

  • Pre-pregnancy undergoing IVF or egg donation no cover
  • Once pregnant – no longer considered “treatment for infertility” so they are covered without implications up to 28 weeks.
  • Cover is for unexpected medical complications only. Common symptoms such as breast tenderness, constipation, fatigue, frequent urination, heartburn and nausea (morning sickness) are not covered.

Downunder:

  • Single uncomplicated pregnancy arising from assisted program cover available up to 26 weeks – additional premium required.
  • Multiple pregnancy no cover.

Travel Insurance Direct:

  • up to 26 weeks no complications single pregnancy but only if not result of assisted reproductive programs.

Flight Centre’s ‘Travel Sure’ Policy (via Vero):

  • Brochure says: “We will not under any section pay for…
    13. claims directly or indirectly arising from:
    a) pregnancy… if you are AWARE of the pregnancy prior to the Relevant Time (which means when the policy is issued), AND..
    i) where complications of this pregnancy or any previous pregnancy have occurred prior to this time, OR
    ii) where the conception was medically assisted.
    This exclusion will be waived from the time the appropriate additional amount payable has been received by us IF the cover is separately applied for AND accepted by us in respect of your pregnancy only”.
    The usual clause that travel must be completed by 26 weeks applies.
  • One IVF patient reported, “Flight Centre … rang me back this morning and said that even though fertility treatment is not noted in their wording they would decline any claims on the basis of: at the time you take out the policy “you are not aware of any circumstance which is likely to give rise to a claim”. He said that doing fertility treatment which may result in a pregnancy would be considered a ‘circumstance’. I was so outraged I burst into tears and hung up on them. … He said if I wanted to take out insurance we could always take them to the disputes tribunal in the event of a claim being declined. Charming.”

ASB (via Tower):

  • One IVFer reported that they cover pregnancy as a special benefit (without needing to declare it as a preexisting medical condition), but only up to 20 weeks. However: You are not covered for.. “pregnancy known to exist at the date of inception of this policy AND for which you have been receiving medical treatment or medication…”.

Westpac gold card travel insurance:

  • ‘Pregnancy is considered a pre existing condition. There is no cover for any expenses as a result of your pregnancy except for an unexpected/unforeseen medical complication or emergency that occurs during the period of insurance and when you are no more than 26 weeks pregnant at the time of the unexpected/unforeseen medical complication or emergency occurs.’
  • When asked about whether they would cover a pregnancy that had resulted from fertility treatment, one IVFer said the customer service agent “didn’t exactly say either way, just that they would look at it on a case by case basis.”

Here’s what another IVF patient found out when she did some further digging:

I rang Mondial yesterday (who do the insurance for House of Travel) and spoke to their assessor in the ‘pre-existing medical conditions’ section who said they assess for multiple companies (she didn’t name them) and she said all the companies she was aware of had similar exclusions.

According to their policy, if you are ‘not yet pregnant’ (at the time of taking out your insurance) but are undergoing any fertility treatment now or before your travel, you are not covered for any medical costs or cancellation related to pregnancy.

However, if you are already pregnant at the time of booking your insurance, whether naturally or from fertility treatment (including but not limited to IVF) then they will cover you until 26 weeks with a singleton pregnancy, or 19 weeks with a naturally occurring multiple, but not with multiples arising from fertility treatment.

Her suggestion was to take out normal insurance when you book (making sure it covers you from the date of taking it out rather than the date of travel), and if you get pregnant, then you could cancel that cover and take out a new policy (with a different company probably!)

I have contacted Consumer NZ on this one and they plan to look specifically at this issue the next time they review travel insurance (later in 2010). Stay tuned!