The art of being blindsided

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Take 2: The China Edition

Going through this process and having mastered the art of ‘The wait’ I really, truly thought that any emotional reactions had been beat out of me and being well researched and prepared I would be ready for anything.

Surprise, surprise, I could not have been more wrong, even if I had tried.

Last Friday (now two Friday’s ago), on a bright sunny Spring morning, I walked along the river slightly nervous for my first appointment in Beijing. This appointment would start to get the ball rolling on making sure all my tests would line up and the tests could go ahead on the correct days.  The nerves were coming from the fact that all of a sudden these tests were upon me and here I was on my way to begin the journey of getting confirmation on what path my life will soon take…left or right.

Upon arrival I bumped into a friend – which happened to be a great distraction, especially as he is a boy and talking about girly things like fertility definitely wasn’t going to happen!

A nurse then came to take my vitals and asked me a hilarious question to determine if I needed to be weighed:

“What are you here for?” Hmmmmmm, I wondered,  how to explain that in a sentence or 2? Then she asked me:

“Are you pregnant”  Lol – Well, that’s kind of the whole point of the appointment!  Thankfully I avoided being weighed.

Next it was into the Gynecologists office, a Spanish person and also an English speaking doctor.

After explaining to her why I was there and presenting her with my printed out, organized doctors, specialists and fertility experts notes she turned to me, interrupted and asked:

“But I don’t understand, why you are here?”

A bit taken aback, I said “Well, as you can see my AMH level is 2.2…..”

She cut me off again and said “I can see all that, but I still don’t know exactly why you are here”

Again, a bit miffed, I looked at her in a bit of shock and then she finally elaborated.

To paraphrase she said:

“I’m not sure why you wouldn’t wait a few years to see if you meet someone and then worry about it then.  All clinics interpret these results differently.  My interpretation is that 3 is where your level should be at the moment in relation to your age bracket (she showed me yet another version of the same chart I have seen countless times).  As 3 is close to where your level is (2.2),  I would not be worried. (Hmmm to me 2.2 is not close to 3!).  If your level was under 1, then you should be worried and want to hurry things. I am not sure why you would do further tests with this number however I am happy to give you a referral for a second opinion.  As there is no real fertility experts as such in Beijing, except a guy at BJU (another big and popular hospital here),(she then spouted off his impressive sounding credentials), he sometimes gives appointments about fertility (his specialty/interest), so I could refer you to him”.

As you can imagine my head was reeling.  I have had tears well up before but I have never had tears literally leak out directly.  I was in such shock.  What had just happened?!?!?!

After all this time and from 4 different people I have been told 1 thing and then this interpretation comes along.  I felt completely blindsided.  This was just meant to be an appointment to get all my ducks in a row, not one to completely turn my head upside down.

I walked away in a trance of emotion.

The doctor had gone ahead and booked the tests and I had her personal email so when day 1 of my cycle came along, I could contact her directly to make sure I was able to gain an appointment for the much needed day 3 tests.  If I can give her one thing, it’s that she was extremely straight up and up front with me.

Unfortunately for me, directly after this, I had to go and get my new passport photo taken! Blotched, miffed face and all.

Now, as a couple of my family members have pointed out, this is just one opinion however it is a radically different opinion compared to what I have encountered so far.

I know that in reality this is good news but how do you look at something like this with fresh eyes when for the last 2 and a half months those eyes have only been looking at coming to terms with worst case scenarios and intermittent decisions with weary eyes?

So, what do you believe?  What path do you choose?  How can you make a decision when the same results point to 2 different things?

Well, my plan is to seek another opinion and hope to god that one confirms something OR it is back to the drawing board.

Gut feeling…I think you may be called up for duty again.
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The power of second opinions

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After receiving my results and diagnosis one friend in particular mentioned getting a second opinion.  She had told me about her experience previously where 2 doctors had told her that she would never have kids, they got another opinion, did IUI and ended up with 3! I was a little apprehensive, as I had been told by my specialist that the results were pretty final but took on her advice anyway, wondering how I would go about it.

With her voice in mind and other friends pumping me with their incredible wealth of knowledge, I fully disclosed all of my doctors notes and results to the clinic in Greece (Serum), when filling out their online form.

Incredibly and much to my surprise, as mentioned in a previous post, I was greeted with realms of facts and knowledge.

The one piece of information that seemed key was the fact that my specialist had told me (and then a fertility nurse), that ‘The pill’ does not effect the outcome of AMH.  So, trusting in the experts I took their word as gold.

Unfortunately or fortunately, whichever way you choose to look at it, I was given different information from Serum.  They stated:

“Your doctor’s letter states that AMH isn’t affected by being on the pill, but the evidence isn’t totally clearcut for this always being true.  Several studies have shown falls in AMH among women who go onto the pill.  It’s just possible that your low AMH was caused by being on the pill and you would want to be sure before taking any big decisions.”

So, there was hope!

Then after another email with me asking a few questions they mentioned this:

“Just to mention that the studies that show AMH not being affected by the pill will have been based on women with perfect ovarian reserve and it’s not so clear how the pill affects AMH for women with more sensitive ovaries.”

Or maybe not so much hope!

They then went on to say in following emails, in round about speak, that they wouldn’t touch me with a ten foot barge pole until I had gone off the pill for at least 2 months and then got retested for my AMH and FSH levels and that I also needed to have a Baseline Ultrasound.  Well, ok then.  I was floored.

I was a little premature in my thinking that ‘The wait’ was over.  As I found out later, at least 2 months off the pill to allow my body to return to it’s normal state, means testing done at the 3 month mark, as it has to be specifically timed for FSH and the ultrasound.

Roll on the end of May when I am finally able to receive more accurate tests and I am crossing fingers and remaining positive for a more favourable result, while still being realistic and researching into all my options to make an informed decision when the time comes.

Believe me, there have been many more adventures on the journey between the results, questioning of the results and now.  And I am in no way blind to the fact that there will be many more before the end of May.

Some adventures have been depressing, some hilarious, some confusing, some hopeful but all of them have been a part of the journey.  My journey.

I am not one to wish my life away but…..bring on May!

Down with one!

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…or not!

It is incredibly hard for me to write some of these posts and not just because of the what they are about.  I am not sure if any of you have picked up on this but what I have shared so far only happened in that first week of finding out – that was about 6 weeks ago.

As you can imagine a lot has changed since then but also a lot has not.  So many important things happened during that first week and I feel that I need to explain them properly for others to fully understand my story and decisions.  However it is unbelievably hard to write them now, looking back, as what I know now and feel has changed or stayed the same or I am no further forward or I have made firm decisions – don’t worry, not THAT decision….not yet anyway.  This is what makes it incredibly hard to write ,as I am not sure how to approach the posts – from then or now or a mix of both.  Also I have had so many incredible stories shared with me and so many amazing people reach out I want to make sure that everyone understands at least one place that I am at right now. So I will start with a decision I have firmly made.

I have decided that at egg freezing is no longer an option for me.

This in turn rules out New Zealand for a place to help me or have treatment in, as egg freezing is their only option unless I have my own personal sperm to do other options with.  As we all know I am painfully single, so this is not the case.  Also, as you know, I could wait for a sperm donor on a list however that list is 2-3 years long and my time frame is a year, so the math does not add up.  So out with New Zealand.

Obviously this decision has not come lightly however I am just so relieved to have at least one option checked off my list and into the ‘do not want’ pile. Scratch that.  More like in the ‘will not do’ pile.

A friend of mine recommended an amazing website ‘Fertility Friends’ and although incredibly overwhelming (I am still using my mantra of step by step and only looking up small things at a time), it has real people, sharing real stories and really is the best place I have been able to find concrete information, that helps all different people from all walks of life, from all different countries around the world to be informed without doctors and too much clinical stuff getting in the way.

However, there is no escaping the dreaded acronyms!  My god, those things have become my worst enemy, so much so that I now have a fertility acronym dictionary in my notes on my computer.  My god, how life has changed! That page used to be my ‘bars to visit’ list!

Fertility friends has incredible threads dedicated to different things, however the Australasian thread was the most helpful at first.  Long story short, it helped me see that most people with infertility issues in Australia and New Zealand basically said ‘Get the hell out’.  They have gone to reputable clinics in mostly South Africa, the Chech Republic, Bulgaria, Spain and Greece to seek more options and credible advice, that was more affordable.  And by more affordable I mean SERIOUSLY more affordable.  One Australian couple had flown to South Africa, had a few treatments/cycles and flown back and that cost them the same as 1 treatment in Australia.  For me it was a no brainer….start looking into overseas options.

The same friend who suggested this website, had sent me a few threads and as she is interested in this stuff (I am so thankful for that and for her!), had seen that a few clinics were continually mentioned, down to the person who was best to deal with.  I looked up one clinic – Serum in Greece and was amazing by what they could offer.  I submitted a questionnaire from their website, attached my doctors notes and within a day I had heard back.

Wow!  I was completely blown away by their knowledge, efficiency and professionalism.  Most of the knowledge I have now, still comes from those first few emails.  As I had asked about egg freezing (among other things but that will come later), I was given great advice.

Serum do not “offer egg freezing here as it’s relatively unproven as few babies have been born from frozen eggs worldwide except from fertile egg donors.  Increasing numbers of egg freezing cycles are being run for women wanting to postpone having a family but only a tiny portion of those women have gone on to try getting pregnant with those eggs.  The proportion of those women who have extra fertility issues like low AMH is also probably small so it will be difficult for any doctor to give you a robust estimate of what your personal chances to have a baby from 2 cycles for frozen eggs would be.  I think it’s unhelpful to start thinking of  egg freezing as an insurance because it may be that even with several cycles of freezing, the eggs do not give pregnancy when you come to try with them.”

After this email I obviously did some more research and found out the following things:

1 – Eggs have a high water content so can be susceptible to both damage and destruction as ice crystals within the egg can cause it to fracture when thawing

2 – Thawing of the eggs does not have enough research to support successful pregnancy outcomes and during the thawing process (depending on how your clinic does it – oh yes, there are a few ways! More fun knowledge I had to learn about), there are low thawing survival rates.

Laying it all out on the table this would mean because of my low AMH levels, if I did a round of IVF to extract eggs, I would only at best case scenario, have 6 eggs, in most cases half are viable (due to varying reasons), that’s 3, then they would need to go through the thawing process with maybe, again, at best, 1-2 surviving and then subjecting myself to trying to get pregnant with only a small chance of that working down the track, with no proven research to say it will work.  I don’t even want to go down the track of my worst case scenario outcomes or lack there of.  Women with non fertility issues would have a much better chance and the statistics are still against them with low pregnancy outcome rates.

That is a lot, and I mean A LOT of money, time, hurt, energy, life wasted  and a seemingly endless emotional roller coaster for a crappy not scientifically proven way of preserving fertility, that has not even been a great deal successful in the most fertile of women.  Imagine it with the fertility challenged.

I have decided that I am not wanting to waste my life, worrying if it may work, sending myself into crippling debt for a possibility or a maybe or a just not sure.  I want something more concrete than that, even of it is just slightly more.

So egg freezing is struck firmly off the list.

Down with one, what will be next?