Things the USA has got wrong

OK, so aside from Trump (just lost a few of my readers there!!) the USA has got a few things wrong.  As I sit here in the UK on a short work trip back to my home country I realised the USA got a few things wrong, very wrong particularly when it comes to infertility.   Let me explain.

But before I do, have you ever heard of a ‘shit sandwich’ as a method for giving feedback to someone?  Briefly, a shit sandwich is where you tell someone something positive, then something negative, then something positive again.  It helps make the negative more palatable.  So here is my shit sandwich.

Things the USA has got right!

Parking for FREEEEEEE! (or very cheap and you never need change if you do need to pay).  It’s very easy where I live in Virginia to drive somewhere, anywhere random, and not have to worry about whether or not I have change for parking, or limit my time somewhere because I only had 2 quid on me at the time.  True fact.

Portion sizes in restaurants.  I can buy one meal and have a second meal for free because the portions are soooo big…it’s expected that all leftovers are taken in a ‘doggy bag’.  It is deemed rude not to take a doggy bag!  So I always order something that will taste good the next day.

Friendly customer service.  Any American reading this disagreeing with me on this point, just come on over to the UK and return a shirt you recently purchased because you changed your mind.  Good luck with that one!

Things the USA has got wrong.

Poor healthcare coverage for infertility.  In 2012 a survey showed that 46% of people with infertility did not have ANY form of healthcare insurance coverage.  And I am willing to bet that of that 46% that do, the majority of insurances will only cover testing and minimal treatment options.  Infertility IS a DISEASE.  Why is still perceived as ‘optional’?

IVF for wounded Veterans. The coverage runs out in September 2018.  WHAT??? WHY??? In 2016 congress passed a bill that allowed the veterans agency to provide cover for IVF for wounded….for TWO YEARS ONLY. WTAF. I mean what monster could have not passed this indefinitely – these people have literally gone to war for their country and can’t now build their family because their deployment caused made them infertile.  What is your beef?????

Introduction of Personhood Bills to declare when a person becomes a person without understanding the implications. Wait.  A personhood sounds pretty reasonable?  Well on the face of it, agreeing when a person becomes a person sounds like a good thing.  I am NOT going to debate here about personhood bills, but I will say that there are huge implications on infertility treatment if any of these bills pass.  Most people would believe that these bills aim to create a constitutional framework that would make abortion and embryonic stem cell research illegal.  I am not debating these issues here, they are separate.  But such legislation endangers IVF with many uncertainties over what the implications are for embryos that are created from the IVF process.  severla questions that have unclear answers if personhood bills were passed include:

  • Would women who have ectopic (tubal) pregnancies after IVF be able to receive life-saving treatment, or would the embryo’s legal rights have to balanced against hers? ITS A HARD DECISION TO MAKE WITHOUT THE LEGAL ISSUES AS IT IS…if you have been following me for a while you will know that I went through this and had to terminate my pregnancy of unknown location, suspected ectopic.
  • If one or more microscopic embryos from an IVF cycle do not develop normally in the lab or fail to result in live births after transfer (all natural events), could the physician, lab, and/or patient be criminally liable? Except for the embryos transferred in all my three IVFs – ALL BUT ONE of my embryos arrested.  That’s a whole lot of potential legal implications under personhood bills.
  • Not all frozen embryos thaw successfully. Could embryo freezing be prohibited as too risky? I’m relying on my little one frostie, but there is a 50-50 chance it won’t survive the thaw.
  • Will patients be prevented from donating their frozen embryos to research after they complete infertility treatments?  If we decide not to use our embryo or I died we agreed to donate our frozen embryo to research.
  • There are many more questions, you can read about them here on Resolve’s website here.

Things the USA has got right Pt II

Okay, so I will end this shit sandwich with something positive.

Open and progressive Ameicans.  I have found an amazing online community who are largely Americans who are willing to be open and share their story to break down the stigma and barriers about infertility.  The charity Resolve is also prevalent in the community, bringing people together to fight infertility related issues and provide support to sufferers.  When I come back to the UK I sense a lot of reservedness when it comes to infertility ,whereas I don’t find it quite that way in the US.  For that I am grateful that America is breaking down boundaries with their openness around the subject of infertility and that it is a disease that affects 1 in 8 couples.

Knowing what you’re missing

Primary infertility is fearing what you’ll never get to experience.

Secondary infertility is knowing what you’re missing.

These aren’t my words…these are from a fellow blogger who published a post on scary mommy recently (When you are dealing with infertility the second time around).  And these are perfect words to sum up where I am and where this blog is.

I remember saying to someone who was about to go into surrogacy for a second time around…”At least you have your daughter to remind you when you are in the trenches of how success can happen”.  I kind of cringe a little now looking back on that because I said that when I had ZERO children.  I understand differently now, that there is no “At Least…” Every single infertility journey is different and comes with their own individual aches and pains that make it so hard for there ever to be an “At least…”.  There just isn’t.

If someone told me now “At least you have Aviana…” I’d probably politely agree and say “yes, I am lucky”.  Because I AM LUCKY. I know that of course.  But the “at least” part negates or nullifies all the pain of infertility.  A slight of words, an unknowing stab in the heart.

Here’s the thing.  IF I was fertile, I would be happy to wait much longer to try for a second baby.  I would of course be three years younger, so age wouldn’t be of a concern to me.  I would wait because I would want my body to recover from child birth and breastfeeding.  And to ensure that I don’t have two under two – because I don’t have the patience of a saint, quite frankly (Much kudos to you parents that do!).  I would wait so I can catch up a bit on my career…because maternity leave DOES impact it.  I would do more research on IUGR and see how we could prevent it or manage it better.  These are MY personal feelings, Chris has other feelings too about it all, some are similar, some differ, but they are not for me to share with the world.

The option to build my family when I want to is not an easy one.  I know that time is ticking.  My eggs are declining in quality and my body races towards the menopause.

You see, with infertility the first time, it was a genuine fear that I would never become a mother.  It was a completely valid feeling.  What’s different now, is that second time around I do know what I am missing. I know what it is like to carry a baby and to fall in love with it.  Despite all the pain and challenges, I would do it all again.  I’d face those mountains.  I’d be better prepared and I’ll never have that fear that I won’t become a mother because I already am.  So if you see me in the infertility trenches some time in the future, remind me that.  May be it will help.  May be it won’t.  But until I am there I cannot possibly know, because every infertility journey is different.

 

What drives you to advocate?

Last night I was talking with my local Resolve infertility support group leader about some things.  I asked her how she was able to find the courage within to tell her story to the world in order to advocate for change in family building policies.  She has done many inspirational things as an advocate and has an amazing way with finding the right words that hit home.  Quite frankly, sharing your infertility journey in the public’s eye is terrifying.  She told me her courage comes from an underlying belief that we have to fight for change so that our children don’t have to go through what we have been through.  It is so so simple, but so so powerful.  And it probably seems obvious, but it really hit me hard. In fact, I love it.

If I don’t advocate for change in family building policies…who else will? Who else will make the difference so that my unborn child and her friends won’t have to struggle with the road blockages that face us in growing our families when infertility hits?  Financial stresses, friend and family stresses, work stresses all on top of the physical and mental stresses of being infertile.  Some of these stresses can be removed with a little help of legislation and education.

I’m going to raise my voice and share my story of success.  I may be judged, I may be scrutinised, others’ words might hurt me on the way…but that won’t compare to the potential opportunity for positive change in the future for my children if I don’t speak out.

My blog is one way…writing letters to politicians is another, but there are many other ways, and I’m going to start by having the courage to fight with this mantra supporting me.

Watch this space my friends, I’m feeling empowered 🙂

Natural Conception after Adoption and Assisted Reproduction Treatment

Today at work I was putting together a presentation on “What is correlation?” (I know, my work is full of excitement and such geekery 😎 ), and I came across an interesting example of ‘illusory correlation’ from the infertility world that I thought I would share with you all.  I was about using it as an example in my presentation.

Have you ever heard someone say

“Adoption increases the chance of an infertile couple getting pregnant naturally?”

Many people have heard or say this, and many can tell you a story of someone they know/know of that this happened to.  The rationale behind this can be hypothesised as:

Once the pressure is off and the couple is less anxious, it will happen naturally.

But how true is that?

Apparently it turns out there is NO empirical evidence to support such a hypothesis.  Research (from Resolve) has shown that the percentage of women who become pregnant without adopting is no different to the percentage of women who become pregnant without adopting.  What this means is that, while a small percentage of people who were having difficulty getting pregnant do not get pregnant after adopting a child, these are likely the same people who would have gotten pregnant after having difficulty, even without the adoption.  It has nothing to do with the adoption.

So why do so many people believe this myth?  Because many people can tell you of a story of someone they know that this happened to.  But the thing is, most people can only tell you ONE story.  And they don’t tell you all the stories they know about the infertile couples that adopted a child and didn’t get pregnant naturally afterward.  The examples of where it did happen are salient to them, perhaps because they remember thinking to themselves “This couple is going to have two babies within a few months of age of each other!”  What happens when something is salient – or when it produces a vivid memory – is that people tend to overemphasize the likelihood of its occurrence.  And they give it a lot of attention.

This is known as vividness bias.

The vividness bias is supported by what’s often referred to as an illusory correlation – the impression that two variables are related when in fact they are not.  In this example, because of one or two very salient or vivid examples, many people believe that there is a relationship between adoption and getting pregnant, when in reality, there is not.

(Extracted from: Intentional Interruption: Breaking Down Learning Barriers to Transform By Steven Katz and Lisa Ain Dack)

Similar to the case made for getting pregnant naturally after adoption, you may have heard a similar argument for couples who stop assisted reproduction and get pregnant naturally afterwards.  There is research that was published in 2012 that found that 17% of women who became pregnant, and gave birth, from IVF treatment, became pregnant again naturally (NB….within 6 years!).  For those women who were unsuccessful with IVF, 24% became pregnant naturally after stopping infertility treatment.

Other recent research has found that 16% of infertile women conceive naturally after stopping treatment (within 13 years!).  And by the way, let us not forget that a fertile couple’s chance of conception is 20-24% for every menstrual cycle!  So that 16% statistic still SUCKS.  In addition, the original cause of a woman’s infertility made a difference as to the chance of achieving a successful natural pregnancy after IVF – if the infertility was due to uterine, cervical or ovarian problems, endometriosis or infertility in their male partners, the women had a significantly greater chance of achieving a successful natural pregnancy after stopping IVF.  However in comparison, if the couple’s infertility was ‘unexplained’ or the problem was with tubal pathology, her chances of a natural pregnancy decreased 😦

So there are many illusory correlations out there in the infertility world.  And now you know how to respond to people that say to you:

“ohhh you will get pregnant naturally after adopting/stopping treatment, that happened to my friend/friend of friend”

you can reply

“……the evidence is contrary, my dear, and you are suffering from vividness bias”

It’s a whole lot politer, and factual, than – “F*#$ you”.

A little thought

Before I get into this post I just wanted to say….

I received so much love from you all on my last post I can’t thank you enough for your kind words.  Donald Trump might stupidly say that “He knows words.  He knows all the words.” (Please, please America don’t let him be your next president) But actually you guys have all the words and know how to say them just right -for the whole time I have been blogging here on the GPCH your words have meant that I have managed to get through this journey without going insane.  Thank you so, so much XX

OK here is my little thought….

Someday we will probably show our child their first ever photo.  Chris and I have joked that it would be the best photo for a wedding speech.

blastocyst 3BB blastocyst 3CB

But here Rocky is…with his sister or brother that never made it.  This is just heart wrenching and would probably be a bit uncomfortable for some people who twig that we only had one child.  So perhaps we won’t ever show this photo at their wedding, but I will definitely want to show it to them at some point in their life.

I’m not going to lie, I have struggled a little bit with the fact that one of our embabies didn’t make it. It’s been even harder as there are several ladies in my local support group who recently also went through IVF just after me, all of them have found out they are having twins.  And a few ladies on Instagram who went through their IVF cycles the same time as me also found out they are having twins (two are even having identical twins!).

I know that having twins is not easy, but I can’t help but mourn the loss of Rocky’s brother or sister and ask myself – why?  Sometimes I even get jealous of these lovely ladies and I know that is a terrible feeling to have because I am SOOOOOOOO lucky to have one wonderful baby inside me right now.

Infertility is complicated. I read an article that Resolve published an advertised recently on their facebook.  Reading it helped me put into perspective these kinds of feelings I have. I hope you find it interesting too…

infertilty wounds

Read here: “Healing the Wound of Infertility”

Living in the moment

I should be living in the moment, but I am not.  I think about the past, I think about the future.  First let me say that I am very grateful that we have this chance, that I am finally pregnant. I know there are many women who want to be in my position.  I have been where you are.  But it is not easy, so bear with me whilst I explain.

The past should stay in the past, but I can’t help but question why we went through everything that we did to make our baby rocky (I wonder why anyone should have to go through that, and for some even more).  We still don’t know the cause of our infertility, and this is difficult for me to deal with.  Why did it work this time?   Out of 25 embryos we made, 1 decided to implant itself in the correct place.  1 survived. 1 made it.  But why didn’t the other 24 make it?  Just because I am pregnant, doesn’t mean I have closure on my infertility, why my body doesn’t want to do what it is meant to do.  I was on the edge of losing hope of any medical resolution.  We treated the symptoms, but we didn’t treat the cause.  We are still unexplained.

And all of this is in the past…right?  But then there is the future on my mind.  What if this baby dies inside me?  What if this baby is still born?  What if all this medical intervention has created a baby that cannot survive, that never had a chance or is severely damaged in some way?  What if we go through all this and get to the end with nothing in our arms, nothing to put to bed and kiss every night, but left with a heart of love, broken into a million pieces.

The future is still an infertile one for me.  I do not have confidence that we figured out how to resolve our infertility.  I believe what has happened was a result of simply try, try again and we got lucky.  Luck was on our side?  This is really hard to deal with because, I may never be this lucky again.

It is hard at times to live in the present right now.  I mostly do, but the past and the future sneak into my mind occasionally.  When I catch myself doing this, I remember the things I have learned in yoga and meditation.  I bring myself back to the present.

Why can’t we make a baby? #NIAW

Why?  Why me?  Why can’t I make a baby like all my other friends and family? I have so many questions about why after almost 2.5 years of trying to conceive and failing miserably, month after month.  What have I done to cause this?  Why won’t my body just get pregnant? What am I doing wrong?

It’s human nature to want to know why things happen.  But these are the type of questions that run through my head round and round, continuously ever since we decided to grow our family.  I have yet to answer any of these questions.  It is exhausting.

Chris and I are 1 in 8 couples of child bearing age in the US that struggle with the disease that is infertility.  We tried the good old fashioned way – sex – for 11 months before we went to seek specialist help from a reproductive endocrinologist doctor after we discovered that Chris’s testosterone levels were “below normal”.  It turned out for us that testosterone levels do not actually matter that much when it comes to fertility.  Chris actually had super sperm, and lots of them!  But it did lead us to start the typical tests for diagnosing infertility.

We thanked our lucky stars that all our test results came back normal – there was nothing seriously wrong with either of us.  In fact, we passed all our tests with flying colours, we were top of the class!  But this put us into the category that 20% of infertile couples are diagnosed with – unexplained infertility.  This meant that the doctors could not tell us why we hadn’t been successful so far in trying to conceive the way they teach you at school.  We were about to embark on a journey that was going to take us beyond what they taught us at school – we were going to try to get pregnant with medical assistance.  We were heading into the world of the unknown.  We knew little to nothing about infertility.

At first it was difficult to explain to our friends and family why we were seeking treatment, because there was nothing ‘technically’ wrong with us.  The infertility was inexplicable!  It was embarrassing, it was awkward to explain.  So this is why I started this blog, to help us get over this difficulty in explaining what we were doing and why, as well as helping to explain our feelings about our disease in general.

Unexplained infertility in someways has been a good thing – there is always hope that this treatment will work.  But ultimately it is difficult to accept that there is just no known reason that this isn’t working for us.  In some cases, going through medically assisted treatment for infertility can reveal the explanation of a couple’s infertility.  But in our case, after 3 IUIs (Artificial Insemination) and 3 cycles of IVF (In-Vitro Fertilisation), 1 suspected ectopic pregnancy,  and over $90k of medical bills we are none the wiser as to why we do not have a baby in our arms yet.

Conception is a wondrous act of nature, but it is also an incredibly complex process  – there have to be many stars in line for a healthy baby to be born.  For something that is the very basis of our human race’s existence, we still know very little about the disease that prevents us from growing our families.  It’s incredible, right?

I am currently in the dreaded two week wait of our third (and final) IVF cycle.  If this cycle fails, apart from being devastated, I do not know how we will ever be able to move forward without knowing why this has happened, why medical treatment didn’t work for us.  Our infertility will never leave us.

For National Infertility Awareness Week (NIAW), the national non-profit infertility organisation Resolve is promoting this year’s theme #StartAsking.  The theme is about promoting the questions that we want to be answered, whether this is asking for our Employers to provide insurance coverage, asking for legislation that supports family building options or asking our friends and family to support us.  For me, the one question I have and want to raise more awareness about is to:

 #StartAsking for more targeted research on unexplained infertility.

Perhaps if we can understand more about how or why some couples are infertile, then better focused medical interventions can be developed to defeat infertility.

I want answers!!!! But we won’t ever get answers if we don’t talk about infertility and unexplained infertility.  It shouldn’t be a secret.  We can do this by speaking openly about infertility, by getting organisations like Resolve to help raise our community’s voice and build awareness.

If you would like to know more about infertility, please visit Resolve.org.

If you would like to help, you can contribute by fundraising or donating for Resolve.  Or just comment below with your questions and thoughts to join in the discussion!

wishniaw.png

National Infertility Awareness Week #StartAsking

It’s almost National Infertility Awareness Week here in the US, 24-30 April 2016.  I don’t know if there is an equivalence in the UK, Canada, Australia, NZ or wherever you are in the world, but seeing as my blog lives in an international community I believe it should be an International Awareness Week (So doth Dani declares!).  So join us!

Here are some ways you can ALL get involved to help spread awareness of this disease, whether you are infertile or an infertile loved one’s supporter.

Learn more about infertility.  Because knowledge is power.

If you are family or a friend of an infertile loved one then change your facebook profile picture to this.  You can download the picture from here.

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If you are 1 in 8 couples you can change your facebook profile picture to one of these:

niaw-facebook-cover-image-1.jpg

or my favourite…..

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Let people know that infertility is a disease by using the phrase, “the disease of infertility” whenever you talk or write about infertility.

If you don’t know what to say to someone who has infertility, then you can read this article: “25 Things to say (and not to say)” from Resolve.  If you are finding that some friends just don’t understand your infertility and are saying unintentionally hurtful things – share this link with friends and family so you can help them to help you.

Infertility is a couple’s disease, there is a mis-perception that infertility is a woman’s disease, this is not true.  So don’t forget all the men who are affected too.

what-to-say-image.jpg

So what am I doing for National Infertility Awareness Week?  I have been prepping some microblog posts, one-a-day, on the subject of this year’s theme #StartAsking – I will also be posting on my personal facebook page – eeeeeeek!!!!

I am participating in Miss Conception Coach’s Bloggers Unit Conference!!!!  Watch this space for my article!  You can follow her on wordpress and see all the inspiring articles for the conference, her instagram is @missconceptioncoach – she posts lots of beautiful and inspiring words of wisdom 🙂

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My local infertility support group is running an information desk at our local clinic throughout the week, and I will help man it for a few hours to make people aware of who we are and what the support group does 🙂

As part of Resolve’s Advocacy day some members of my local infertility support group are visiting Washington DC to talk to members of congress about important family building issues.  I can’t go because I have to work (Boooooooo) but they will be taking my letters I have written to our Senators and Congressman with them!

And of course I will be doing all the social media stuff too.

 

OK that’s a lot for now!!!! TTFN!!!

 

Infertility is a disease

Infertility is a disease.  It is a disease that results in the abnormal functioning of the male or female reproductive system.  The World Health Organisation, the American Society for Reproductive Medicine (ASRM) and the American College of Obstetricians and Gynaecologists recognise infertility as a disease.

So why don’t I think of infertility as a disease?  Why do people not think about infertility is a disease?  Because we don’t understand it.  We don’t learn about it at school.  We might learn about it through friends and family, but only if they choose to share their diagnosis and treatment.  Many do not because they are embarrassed that they cannot successfully procreate.

But I am finally beginning to understand infertility, and I have been suffering from it, for over a year now.  It’s taken me a while!  So how can I expect non-infertile people to understand when I live and breathe it daily?

Why is it so important that infertility is recognized as a disease?  Because generally people understand that a disease is something that is fought against.  The concept of letting a disease consume a human being is horrifying, whether it is physically or mentally consuming.  Disease is bad.  Disease should not be tolerated.  Disease should be researched and studied until we figure out how to overcome it.

I personally have been ignorant to the fact that we are fighting a disease.  I have advocated for education and learning about infertility through my blog, and yet I have only just realized that I was ignoring it.  That might seem to be an absurd statement considering the number of blog posts I have made in the past year….I think about my infertility every waking day.  May be I am obsessed by it.  But I have ignored it at large too.  Why?  Because I have been led to believe that I have a choice to procreate.  And luckily, I do have a choice.  I can choose not to procreate.  But my choice to be able to procreate has been taken away from me by this disease.

Here’s an analogy for you.

One day I wake up and notice that I have an open wound on my arm. Hmmmm. I don’t know where that came from!  Well, it doesn’t hurt, so I get up, get dressed and continue with my day.  That small bloody wound on my arm is noticed by a couple of people at work.

Someone asks me…

”Errrrr……Dani……..do you know you have an open wound on your arm?”

I reply nonchalantly,

“Oh yes, I saw that this morning, it doesn’t hurt, so I figured I’ll be OK, I’ll just let it heal on its own”

My colleague looks at me strangely and says, “OK…..if you say so! You may want to get that checked out though, it looks a little nasty”.

I think about this encounter, thinking may be my colleague is right, perhaps I should get it checked out and then wonder when I can fit in a doctor’s appointment to get it looked at.  I look through my calendar and see I have an open space in three weeks’ time after I have made a trip to Europe and back, and a major milestone is complete in my project.  After all….it doesn’t hurt so I’ll be fine.  I make the appointment to see the doctor for 3 weeks and 4 days time.

Meanwhile, I begin to learn that my arm wound offends people, so I cover it up in creative and inventive ways so as to not gross people out or distract them in meetings.  But the wound is getting bigger by the day…it is spreading and now covers my entire forearm.  But don’t cry for me, I can still type OK so, thankfully, I can still do my work.  So no more questions are asked.

3 weeks and 4 days comes and my boss asks me to complete an urgent piece of work.  I think about my arm and weigh up the pros and cons of not going to the doctor’s appointment.  After all…what is the worst that can happen?  My arm might need surgery. May be.  OK I can cope with that, they will give me anesthesia, I’m sure.  Or the absolute worst case scenario.  I lose my arm.  They have to amputate my arm.  Yeh, that would REALLY suck.  But I mean it doesn’t hurt now so that probably won’t happen.  But who needs an arm anyway? Not me….Lots of people cope without their arms. I’ll be fine!

Infertility is the flesh eating disease on our arm.  If it was visible, people will be telling us to go the doctor’s EVERYDAY to get it fixed.  And infertility is like this analogy, because for the past year I have been constantly trying to fit in my infertility treatment around my work life.  Like this anology, if I don’t do anything I could end up losing my arm – and we all know that I’m not going to die if I lose my arm.  My life would just SUCK a lot.  And people would feel sorry for me.  Similarly, if I don’t attempt to fight this infertility like this flesh eating thing, I would just end up with no child.  I’m not going to die.  But that would SUCK a lot, and people would feel sorry for me.

But today, no more, I stand to FIGHT THIS INFERTILITY AS IT IS – A DISEASE.  I will make sure to do my best to fight it, by keeping myself mentally healthy as well as physically healthy.  If this means I need to make sacrifices at work, then this is what I will do to fight this disease.  No more will it simply ‘fit in around my work life’.  If I am going to advocate for infertility awareness and education, I need to fight it like I mean it, and it starts with recognizing infertility as a disease.