#FlipTheScript for National Infertility Awareness Week

I thought hard about how I could help with National Infertility Awareness Week, and I thought about how long I have been talking about this important week on my blog.  I started this blog over three years ago (yikes!) and as I have shared our struggles with infertility with the world people began sharing their stories with me, usually in confidence.  Family, strangers, friends, colleagues, friends of friends have reached out to me over the years.  Because talking about infertility is not easy and it’s not the kind of subject that comes up naturally in conversation.  “Oh hey, tomorrow I’ve got a date with a Reproductive Endocrinologist…you know, because I’m infertile”  There are massive mis-conceptions about infertility, treatments and alternative options to build a family, so it’s not really surprising we don’t talk about it.  I don’t really know what compelled me to begin blogging, but I am glad I did.  So… this NIAW I wanted to offer people struggling with infertility a platform to share their story with their friends, family and the world.  Over this special week I will interview some incredible infertility warriors.

I want to share how different every single journey to build a family is.  I want to show that infertility is a complex disease.  IVF isn’t always the answer and when IVF is the answer that treatments are often an art rather than just science. There are many barriers for millions of people who struggle to build a family that include lack of insurance coverage, out of pocket costs, faith and religion, sexual orientation, and state and federal laws.  The impact of infertility is far reaching – it impacts our family, friends, co-workers and employers.  I want to #FlipTheScript, this year’s theme, to breakdown the barriers and bring the reality to our friends and family.

I take the pledge:

  • I pledge to breakdown the stigma of infertility and share my story
  • I pledge to help RESOLVE make a difference for people with infertility
  • I pledge to be a voice and join in our advocacy efforts
  • I pledge to help support others who are struggling with infertility

Stay tuned 22-28 April 2018 to hear some incredible stories!!

#RELAXgate

It just so happened that I caught on Instagram a hashtag going around the IF community – #RELAXGate.  Hmmmm what’s this about?

Well on a day time TV programme in the UK, Lorraine, a TV Doctor was talking about IVF and apparently he said that “couples need to just relax.

Ummmm Yeh, NO….everyone going through infertility knows that this is the complete opposite of what you should say to someone going through infertility.  And for it to come from a medical professional?

Relaxing is not going to resolve male factor issues, women who don’t have Fallopian tubes, women with endometriosis, couples with unexplained infertility…and many more.  relaxing wont suddenly fix all those issues.  Because infertility is a disease.

Now, I can see that suggesting that couples going through infertility treatment should find time to take care of themselves, that is good for the mental soul.  It IS stressful – pregnancy loss, drugs, tests, invasive procedures, juggling finances, time off work, bloating, weight gain, needles.  It’s a lot to deal with.

So I thought I’d go find out exactly what the TV doctor suggested.  (Unfortunately, I cannot find a link on YouTube yet to share with you.  Hopefully someone will share it soon, although with the negative attention surrounding this episode I doubt it will be released by ITV anytime soon.  So you can only see this episode of Lorraine if you live in the UK (search Wed 18 Apr 18 episode on ITV hub))

The purpose of the section within the TV show was to raise IVF awareness as it had been in the news this week (Apparently I missed that).  First of all someone famous announced they conceived twins from IVF (Chris Evans).  Second of all, an MP was making calls for the British government to ensure that everyone across the UK get equal access to IVF.  Currently in the UK the NHS the guidelines for access to infertility treatment differs depending on where exactly you live.  Some places don’t even offer IVF at all.  People are moving across the country so that they can get treatment!  So this is all good stuff.

So the show introduced this and then moved on to taking questions from three ladies and the doctor attempted to answer them.  Boy, did the show pick some women who have very challenging questions.  These women have been through a lot.  It was always going to be awkward.

The first woman had already been through 5 rounds of IVF (considering the that the NHS only offers  a maximum of 3 rounds I am guessing she went private, out of pocket.  She has suffered two miscarriages and will be going through their 6th round later in the year. She asked a question about whether there are things that she can do health living wise and whether it would help with treatments as a positive outcome.  He said, yes it’s a good idea to be healthy and to Check for nutritional deficiencies anemia, thyroid issues, immune factors  (all NON standard infertility tests by the way and often tested after multiple failed cycles) he also talked about importance of thinking about healthy foods and supplements (on doctor’s advice). OK, so not too bad of an answer….

The second lady has been going through treatment over 5 years, and is about to try IVF for the third time.  She asked about the effects of the IVF medications on health in the long term.  The doctor answered that there are no effects in long term.  So that was quite easy.  Actually, that isn’t entirely true.  The fact is that really we just don’t know, the research is lacking in this area.  Some studies have indicated increased risk of cardiovascular disease, stroke and diabetes (from an increase in weight due to the hormones).

The third and last lady has been through 3 rounds of IVF, 2 FETs and 2 miscarriages.  Her question was if she decides to try again, what could she do differently.  His answer? He said the best thing you can do is just RELAX.

WHAT???? Say again? Did you just tell this woman to JUST RELAX.  he also said ‘JUST’, which negates her struggles even more.

He continues…”Just get on with your life, relax, forget about whether it will work or not…..forget about the statistics of success as you get older, there is no reason it wont happen, be positive and  I’ll keep my fingers crossed for you.”

Some sound medical advice right there. NOT.

I should add that THIS DOCTOR IS NOT A REPRODUCTIVE ENDOCRINOLOGIST he is a General Practitioner.  He is a famous TV doctor.  WHY did they not bring on the fertility specialist? Especially with women asking questions who are way into their infertility journeys with multiple failures.

And so #RELAXGate began.

The Dr – Dr Hilary Jones (@DrHilaryJones) apologised on Twitter, but he digs himself further into a deeper hole in my opinion:

relaxgate

He then also spread a false perception that when people stop trying they get pregnant.  I wrote a whole post on this and I cant find the link.  But really?  Why are you still speaking??? When you apologise you NEVER say…”but”…you just negate everything you said before.

BTW – I am loving this tweet from @IVFBuddies….

relaxgate2

 

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.

 

Our Frozen Embryo

It doesn’t seem fair that you existed in this world for 5 days, but we pressed the pause button.

We have frozen you in a moment in time, but we don’t get to meet you for a while yet.

You are known as the power of life, but we pay $60 a month to keep you just so.  It’s such a small cost in comparison.

You made it against all odds to grow strong, to be the strongest as you could in just 5 days, but we needed you to wait a while whilst my body repaired itself.

It’s been two years of knowing you, but we don’t know what the colour of your hair is meant to be, whose eyes you are meant to have, whether you have your father’s smarts or your mother’s craziness.

Will your sister ever get to play with you?  What do we tell her if you don’t get to play together? ….And if you do, how do we tell her that you have been in this world longer than her? It’s a mind blowing thought.

How can we ever make a decision not to meet you?  How do we make a decision instead that would result in us giving you to some researcher that will never think of you in the way that we do.  How do we make a decision that you are better off not with us?

I tell myself that you sing to yourself ‘The cold never bothered me anyway….It’s hard to imagine you with your own personality.  Your own you.  But we try to keep it clinical because that’s how we can cope, but it’s hard to not let our minds wonder to happiness and completeness.

Your existence in itself is both awesome but a challenge.  I wish it wasn’t a challenge, but it’s not so simple.  I wish we could look into that magic crystal ball and it tell us that you will be fine, it will tell us that you will fight to be here with us and you will win. We will win. The world will win to have you with us.  It would tell us you are small but mighty.

Everything happens for a reason or does it?

When I hear the statement ‘everything happens for a reason’ my insides start to gurgle a little, my heart rate begins to rise, I feel a bit sick. I try not to let it spin my head around. Being able to truly believe that everything happens for a reason must be amazing. I used to believe it, I used to believe it because it would help me get through some of the crap in my life. I’d tell myself that this shit has happened to me because it’s going to make me a stronger person, a better person, a more empathetic person, more resilient. I can turn these crappy things that happened to me into life lessons. I would be that great oak tree that gets stronger after it gets struck by lightning.

But then life got really shit when it came to growing our family. Infertility and pregnancy loss. And I questioned it. I met some other incredible women who had been through some shittier shit. I questioned it. I always sought the good out of evil…I still do, but I can’t always see it right now. So I settle with, ‘Everything happens’. Period. Full stop. The end.

But what does a mantra like ‘Everything happens’ do to me? Does it make me bitter? Does it make me a fool for not seeing the good out of the bad?

I don’t talk about religion much here on this blog, but when people say ‘it’s god’s plan’, to me that’s even worse. When I was a kid and I was upset about something I used to close my eyes tight and through my tears ask god why? Why me? And god would reason with me. Actually, I was reasoning with myself, I just pretended it was god talking to me because somehow it made me feel a little better. But telling someone when they are going through struggles ‘it’s god’s plan’ is surely enough to make someone lose their faith, because it is so hard to understand why god would let a baby die…because… it’s his plan. It’s hard to understand why god didn’t bless a family with a baby of their own. It’s hard to understand why our loved ones are taken from us before their time. It’s hard to understand why god would let a terrorist kill people at an airport who are about to go on holiday with their children (innocent children) or who are separated from their loved ones because of work. It’s truly hard to understand what the greater good or plan is. If this was true, surely god is evil? I honestly don’t think that would be the case. For me, I think it is probably better to say that it is god’s plan to be with you, if you let him, when shit is thrown your way.

My current feelings are that time spent thinking about the ‘why’ is time spent wasted. Infertility has taught me how to be in the present. It is therapeutic, it’s survival. Although, it could be argued that by saying ‘everything happens for a reason’ and ‘it’s god’s plan’ would actually HELP with living in the present, but I feel it would be like living in the present with your head in the sad singing lalalalala!!

So for now I’ll try to ignore those few words ‘everything happens for a reason’ and live in the present otherwise it will eat away at me, little by little. I’m glad I’m mentally able to do that right now. I know it won’t always be like that.

Perhaps I’m just parking it for another time when I feel like thinking about the bigger why. Or. Perhaps infertility has actually taught me coping mechanisms for shit thrown my way.

Infertility round 2

Caught between a rock and a hard place is what I would call planning for a second child after dealing with infertility the first time around. And we are not even at the stage of planning number two, we are still at the early stage of deciding whether we want a number two child.

Let's go back to times before we faced infertility. The times when we were naive to think getting pregnant was the easy, fun part, and it was the subsequent pregnancy and beyond that would be the more challenging part of growing our family. I'm pretty sure we would have said that our family would ideally consist of two children, a dog and a cat (or two). Today, if you asked us what our family would look like in several years time, I wouldn't be able to tell you because I just can't imagine it right now.

Today, I can't imagine Aviana playing with a sibling in the garden, showing them how to throw and catch a ball, or holding her baby brother or sister in hospital, asking THAT question 'where do babies come from?' or her poking my tummy and proudly saying to random people that mummy is having a baby. I can't see it. I don't want to see it. Because if I see it, I think it, I feel it and if it never happens, it will tear me up forever. But sometimes my mind does wonder there and I try not to cry over the fact that it is so distant and fuzzy. The future is so murky.

And yet, I am better prepared than I was before Aviana became part of our lives. Today I know I am infertile, I know what the chances of getting pregnant again are, I'm an infertility warrior, this isn't my first rodeo!

Somedays, I'm positive and hopeful….perhaps my hormones have 'reset' and I'll get pregnant without medical intervention, we have a frozen embryo I won't need to stimulate again, I now know all the IVF tricks of the trade, it would be a piece of cake!

And other days, I'm down and negative…I'm getting closer to 40 than 30, my eggs are even poorer quality than they were before, we only have ONE embryo in the freezer-it's got a 50% chance of surviving the thaw, there is a good chance I will have another IUGR pregnancy, we will be doing this with a toddler, I'm not sure I can cope with another IVF stimulation and suffer from OHSS. And then there is the risk of pregnancy loss, An ectopic pregnancy was a cruel experience.

And the negative is winning at the moment, infertility round two doesn't look good to me. I don't want to waste the precious time I have with Aviana whilst she is this small worrying about infertility. I'm not sure where this is going, but knowing I managed to survive that infertility journey the first time and looking back at that mountain, I'm not sure I can do it all over again.

Back again

It’s been a while, but that doesn’t mean I have forgotten about my great pudding club hunt.

Last week I attended our local infertility support group meeting for the first time in well over year and half.  Not because I’m trying to get pregnant again, but because my infertility has yet to be resolved.  It’s on my mind still.  Because I want to help others still in the trenches whilst I have a chance to look at it from a different perspective.  I have lessons I have learned I can share and want to share.

It was a great meeting, I saw some old faces and new ones.  We talked about jealousy and infertile guilt.  We talked about self care as a way to help cope with those feelings better.  I still get jealous of those who can ‘plan’ when they have a baby.  I still get jealous of those with beautiful baby bumps.  I still feel guilty where some of my infertile friends have yet to hold their much wanted babies.

Here is where we are at right now.  We have one frozen embryo from our first round of IVF.  We still have unexplained infertility.  We now have the added complication that because of my unexplained case of Intra-Uterine Growth Restriction (IUGR)  there is a good chance it could happen again, and because we don’t know the cause there is very little we can do to try to prevent it from happening again.

In fact when I went to my annual OBGYN checkup last week, I asked the doctor what they could do differently if I were to get pregnant again.  She INSULTED with the first thing that came out of her mouth – “Well first of all, we make sure you eat well and healthy…” FUCK YOU. It was as if she was saying that I was the cause of Aviana’s IUGR.  She also said that they would do an extra scan at 32 weeks.  But that was all she had to say about it.  Now, admittedly, she wasn’t my OB for my pregnancy and I ambushed her with that question.  But the first thing that came out of her mouth still hurt.  I am questioning whether I will go back there again.

Anyway…the point is that this unexplained IUGR makes us question whether we would even want to risk being pregnant again.  It’s an added complication if we ever want to grow our family again.

Also, I wanted to note that the majority of those who I follow on blogs and instagram have managed to succeed in bringing home their babies.  There are some of you out there who are still fighting, or have taken the path of what a lady in my IF group calls as ‘forced child free’.  I think of you often and wish infertility wasn’t such a totally unfair bitch. XX

I am 1 in 8 speech

For my first international toastmasters speech which is known as ‘The icebreaker speech’ I decided to talk about my infertility. I thought I’d go big or go home! Talking about infertility to a bunch of work colleagues and a few strangers is nerve wracking!! This speech is the first of many I must give to gain my ‘competent communicator’ award. The idea is that the icebreaker speech is 4-5 minutes long and aims to ‘break the ice’ by talking a little bit about yourself as an introduction to your fellow toastmasters club members. Talking about infertility seemed like a bold challenge. 

It was hard to focus a speech that is only 5 minutes long to what has been a challenging part of my life. But in the end here is what I said…

“Ladies & Gentlemen, let me ‘break the ice’!! Let me take you back in time to when I was 9 in a leafy suburb playground of London. I was a bit of a Tom boy. I liked cars and transformers, so whenever I played with the boys, the girls would taunt me with the school playground rhyme…

“Dani & Chris, sitting in a tree

K-I-S-S-I-N-G

First comes love,

Then comes marriage,

Then comes the baby in the baby carriage”

Well ladies and gentlemen, that nursery rhyme isn’t quite so simple as it sounds after all. Because I am 1 in 8. I am 1 in 8 who suffers from the disease that is infertility. A baby in the baby carriage is not always what comes next.

Let me introduce you to Chris, my husband of 5 years….


Here he is winning the District 66 toastmasters humorous speech competition. You can see I have some competition!!!

4 and half years ago we moved to the US to work here. And it was at that point all our friends and family asked us….’so…when are you going to have a baby??!!’ Little did they know that we were trying but not succeeding. After many tests, thr doctors couldn’t tell us why we couldn’t have a baby. We were diagnosed as unexplained. So we tried InVitro Fertilisation or IVF.

Our first round of treatment we created these beautiful embryos…


We named them huckleberry and huckleberina because they looked like raspberries. Just 8 cells smaller than 0.1mm. One decided to stick around and I got pregnant!!! We were so happy! Until we discovered that it had implanted in the wrong place, the pregnancy was ectopic and so we sadly had to terminate the pregnancy as it threatened my life. 

We were devastated. We had to wait a while to try again.

Second time we created these 5 day old blastocysts. At first we didn’t name them because it was too painful. But in the end we did nickname them Petrie and Spike.


But it didn’t work. I didn’t get pregnant. It was very stressful and even Chris didn’t want to try again so soon. But we decided to try again. Third time lucky they say?!? This time we created thee 5 day old blastocysts – and as you can see we got a better photo of them  third time around!


And it worked!!! Today we have our beautiful daughter Aviana who is now 6 months old.


We are the lucky ones. Not everyone of the 1 in 8 gets to take a baby home in the baby carriage. It was a hard journey and involved hundreds of injections and there were many tears. People ask me now that I have a baby when will number two come along, or will we have another baby? But I tell them it’s not quite so simple as that. It’s hard. I wanted to share this with you today as my icebreaker because this is a subject deep to my heart and I hope you have learned something interesting about me today.

Ladies and Gentelemen, Thank you.”

I really enjoyed giving this icebreaker speech. It probably wasn’t what people would have expected as a first time topic. I got a great response from the audience. There was actually someone in the audience who was going through IVF themselves and have done two cycles at the same clinic as we used. They were about to decide whether or not to go for a third cycle and whether to stay with the same doctor. I offered details of our local infertility support group. It was obvious it was meant to be that I talked about this topic for my icebreaker. 

Infertility leaves a scar. I am grateful we were the lucky ones, but it doesn’t suddenly disappear from your heart when you have a baby. For me, continuing to talk about it and spread awareness helps the healing.

Tiny Bump tears

I’d forgotten about the Ed Sheeran song ‘Tiny Bump’ until this morning.  Today I put on the Ed Sheeran album + I bought back in 2012.  It’s been a while since I listened to it and I had forgotten this beautiful song he wrote about his friend who lost her baby at 5 months pregnant.  I just bawled my eyes out.  Actually it also reminded me that I put the entire album on my birthing playlist.  And yes, I think I told Chris to skip it when it came on.  Not the best song to listen to when you are in labour!  If you haven’t heard it, it’s on you tube, linked below.  Just wait to those last two lines of the song and have a box of tissues to hand.