Chris #FlipsTheScript

Infertility isn’t just a woman’s issue, it’s a man’s issue and it’s a couple’s issue.  So when I asked Chris to do this interview he said ‘sure’, but he later let on that he was actually anxious about it.  Even though our story is here on this blog, he finds it hard to still talk about.  So I am very proud of him for pushing through his fears to tell you his story.

Chris, my husband, is here to #FlipTheScript for national infertility awareness week, here’s his story…

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First of all, tell us a little bit about you and your partner….how did you meet?!!

You know a lot about my partner, Dani, this is her blog!!!  But you probably don’t know how we met.  We met at a work event, Dani was organizing a conference and I was a guest presenter.  Although she will swear blind that I wasn’t a presenter, potentially because the amount of wine we had drunk the night before fogging her memory.  We got along very well…the wine may or many not have been a factor.  We married in 2012 and moved from the Cotswolds, UK to Virginia, USA, 6 months later, where we still live today.

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When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

I married Dani thinking that we probably wouldn’t be able to have kids.  It wasn’t a surprise.  But I loved her enough that it didn’t matter.  So finding out we were infertile was more of a confirmation of a strongly held suspicion.  Mind you, we did have a go at it naturally for a year before hand.  It never really felt like a diagnosis of infertility, instead it was an increasing realization of infertility over time.  The failures added up after repeated unsuccessful attempts, we never had a diagnosis – it was just unexplained infertility.  This changed how I felt going into each round of treatment.  The first round of treatment, an IUI, was exciting, we went in full of hope… but by the sixth treatment- our third IVF- each cycle was no longer exciting.  It filled me with a sense of dread, and I went into it wishing it was over before it started.  Some of this was my own personal journey and some of this feeling was because it hurts to see the person that you love go through the physical pain and hurt with all the drugs, surgeries and hormones.

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Where are you on your infertility journey now?

I don’t know.  While that may sound like a strange answer, I don’t know if our journey is over or not.  Is infertility ever really over?  The great news, the wonderful news, is that our sixth round of treatment, our 3rd IVF cycle, was successful and we now have a 16 month old daughter, Aviana.  The reason I am not sure if the journey is over has two parts.  The first is the question of whether we can have a second child, and in part do we want to have a second child, knowing full well the challenges and stress we experienced to conceive Aviana the first time.  The second is that I will always have a nagging question in the back of my mind about whether Aviana is destined to follow the same path as us.  By using science to overcome our infertility challenges, do we pass on our ‘duff parts’ to our future children? So our infertility journey may continue into the quest for grandparent hood.  But having experienced all that we have,  I will never pressure Aviana into having a family.

Oh, and we have one frozen embryo from our first IVF cycle.  Every month we get the $60 bill for the storage of it, a constant reminder of both hope, and the potential for disappointment.  We don’t know what we will do next.

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Has infertility changed your relationship with your partner? 

This was the hardest thing we have ever done. At times through our journey I felt a small amount of hate towards Dani for what felt like forcing me to go on to the next cycle, and I also hated myself for not having the strength to immediately, and willingly, support her.  I thought long and hard before making these statements but we spend so long and so much effort hiding our feelings, experiences and the challenges of infertility that we often put a positive slant on the pain, therefore this is my honest answer, although I must confess it is uncomfortable to say out loud.

The good news is that despite these low points throughout our journey we became closer. It has brought us closer together because:

  1. You have to be close to stab your partner with 200 + needles. Nothing says togetherness like shoving a 2.5inch needle into someone’s body.
  2. You have to be forgiving when being stabbed by your partner (thanks Dani, sorry for the mistakes).

The only way we got through it was as a team. We talked a little and often, we talked in the shower, we talked in the car, we could stop and start the conversations as either one of us felt willing.   Being open, truly open, about how we felt meant being vulnerable and at times brutally honest.  After being so vulnerable and so open, I now feel a level of comfort, closeness and companionship that was more than we had before.

How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

We are very fortunate, we are among the few who have infertility treatment as part of our healthcare coverage in the US.  The majority of our costs were covered by Dani’s insurance and yet we still had to plan and budget for the portion we had to cover.  I’m amazed at those who are forced to self-pay for IUI and IVF treatments because it adds another level of stress to infertility that we didn’t have to deal with.

How have you taken care of yourself physically and emotionally during your struggles?

In the early part of our journey we tried many things to help improve our chances.  We cut out alcohol, we cut out sugar (all good advice that come from ‘It starts with the egg’).  These two acts by themselves served to improve our general well-being and we made a concerted effort to do more exercise.

To be honest, as the journey went on I cared a little bit less about my physical health and focused more on my mental health.   Our first IVF ended in a suspected ectopic pregnancy, leading to us having to terminate the pregnancy of unknown location with the drug methotrexate.   Because methotrexate is to toxic we were not allowed to conceive for at least 3 months after.  After our second IVF failed and as we began our third cycle I began to hate the process, hate the ever present doubt, dread and stress. This was the lowest point for me and where our relationship was most challenged. I didn’t want to do it again, I didn’t want Dani to hurt again and I didn’t want to hurt any more either.  On top of all that, Dani was caught in the Brussels terrorist attack at the airport and was blown up, I didn’t take care of my mental health.  I wanted it all to be over with.  We knew that it would be our last attempt, there was so much pressure.  I don’t know what would have happened if we didn’t get that positive result or we had another loss.  I don’t want to think about it.

How have your friends and family supported you through your journey?  Have you had any experience of lack of support or misunderstandings?  

Overall friends and family have been awesome.  Everyone was supportive, many people asked how they could help.  The flip side of this, which many people going through infertility have probably experienced, is the good intention, but totally uninformed advice and suggestions.  ‘Just Relax’.  ‘My friends tried this…’ ‘Have you tried herbal tea…’ At one point we had received so much of this “advice” that Dani and I started writing a book as a guide for friends and family for what not to do and how to better support loved ones going through infertility.  This is not a criticism, this is a statement of fact, and weeks like this infertility awareness week and #FlipTheScript are part of an ongoing process to educate, inform and raise awareness so that more people know about the challenges faced by 1 in 8 couples. Their good intentions and enormous support and generosity can be coupled with better information so they can truly support the people they love as they go through this truly shitty experience.

What has been the hardest point of your journey and how did you deal with it?  

I can’t and won’t pick one point in this journey.  To do so would diminish all the other moments.  Every part of this journey is difficult.  This whole experience has a price, not just a  ‘$ price’, but an emotional price that we pay for every minute and every day in our struggle to conceive.  Low points come in many forms, the most obvious is the doctor saying we are not pregnant.  The less obvious come when you are sat in a café and look up to see a family enjoying time together, it is just another reminder of what we don’t have.  And in that moment that’s a low point.  As with all journeys there are twists and turns, highs and lows and the journey is different for each of us.  There were some very low points for me, but I’m not comfortable sharing them specifically.  (you may be able to guess some of them from my previous answers 😦 ).

If you could go back in time, what advice would you give yourself?

None. I don’t think any advice I could give now would change how I felt then.  We had so much advice from so many people, much of it good, some of it not, some of it just plain weird, but when it came to it, what really mattered was how Dani and I felt in any moment and how we handled that together.

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

1 in 8 couples are affected by infertility.  Looking around you on a train, in a café, at you work place and realise that as many people are affected by infertility as they are breast cancer.  Charities and support groups have done a great job of raising awareness about cancers like breast cancer….we need to do better to raise awareness of infertility. Talk about it.  Help raise awareness.  Get more research funded.  Help us to bring this topic out from the shadows.  Play a role in removing the stigma from infertility.

Is there anything else you would like to share that I haven’t asked you about?

One final thought, infertility can create some surreal moments that can be laughed about after the fact. For example, there is nothing quite like sitting in an open waiting room at a hospital holding a test tube containing a bright pink sample of your sperm.

Please leave a comment or message of support below for Chris (and me if you like too!!!) 🙂

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Rebekah #FlipsTheScript

Rebekah is fearless. I know this, not just from the fact that she fights a mean game of dodgeball, but also because she is an infertility warrior. 

Rebekah is here to #FlipTheScript for national infertility awareness week, here’s her story...

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First of all, tell us a little bit about you and your partner….how did you meet?!!

Hi! I’m Rebekah, 32, an Aussie living in the USA!! My Hubby is Will, we seriously have the most unconventional love story…it started as a nightmare. Christmas Eve 2014, I thought I would treat myself to a bathroom remodel. A few weeks later when the construction workers didn’t turn up to start their demolition work I called Will, the project manager from Home Depot overseeing my remodel. I was furious! Not one of my greatest moments, but let’s just say my vocab was very colorful. Six weeks later, two burst bathroom pipes, a leaky shower pan, new downstairs carpet, new ceiling drywall and paint, Will would manage to calm me down from this bathroom disaster every day. He became my new best friend.

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When did you realize that you were facing a diagnosis of infertility, how did you find out and what were the issues that you faced?  

In 2004 I went for my annual OBGYN checkup, I specifically remember the doc saying “oh, wow are you pregnant? Your uterus is quite large!!” Not something a single, 18 year old really expects to hear! I went for an ultrasound, and it seemed like the longest ultrasound of my life – I knew something was wrong.  I was in there for two hours waiting for an explanation.  It wasn’t until my follow up appointment that I found out that I had a 10cm x 8cm x 9cm mass on my left ovary.

I needed surgery. The first question I asked when I woke up from the procedure was “Is my ovary ok?”  They told me they had to remove it. I was left in tears wondering what this meant for my future as a mother.

As well as losing my left ovary, I was diagnosed with Poly-Cystic Ovarian Syndrome (PCOS).  I didn’t truly understand what PCOS meant until several years later when I was 22.  I married young, and began my journey to have a baby. I was on Clomid and stimulants for almost a year, but the pressure of it all contributed to our break up. The stress of timed sex, and not knowing if I would get pregnant caused so much strain on our new marriage that it ended just 8 months after our wedding. For me, it was actually a blessing in disguise.

I suffered from endometriosis and over the years had several more surgeries to remove as much of it as possible, and then another two more surgeries on my right ovary for large cysts. Luckily, my one remaining ovary remained “safe.”

When I was 28 I started to panic, I lost 80lbs in order to try to preserve my eggies and one ovary from any more cysts.  That was when I ventured to the fertility clinic specialist to get a baseline of where I was down below.  I wanted to know what the future held and how I could become a mother.

Although I was single at the time, I realize now that I put too much pressure on myself .  I wanted to be a mother so badly. The yearly surgeries took a toll on my body, and emotionally, I was a wreck.  I thought that freezing my eggs would at least take some pressure off the fact that Mr. Right hadn’t come along yet, and give me the chance to be a mother.

My Reproductive Endocrinologist doctor was amazing; I didn’t get the news I wanted, but she reassured me about it all,: I had low AMH, low progesterone and estrogen, and with just one ovary, I was facing a lot of challenges.  To add to it all, a Hysterosalpingogram (HSG) revealed a mass in my uterus and meant more surgery to remove.

By this point, Will and I had only been dating a month!! It felt weird to involve him so early, but I wanted to be transparent with him since not having children could be a deal breaker for some. Three months after my surgery to remove the uterine mass I went for a checkup…

…and there it was…the big 55mm cyst engulfing my ovary, my nightmares come true. The whole reason I was at this clinic was to be proactive in saving my ovary and getting eggs, and now it might not even happen – I was devastated.

I started hormonal treatment, but when I went in for a checkup we found it wasn’t working and the only choices was MORE surgery.  But as I was prepped for surgery I finally got the good news I had been waiting for, the cyst had finally started to shrink!  So the doc cancelled the surgery and when I went back for a follow up appointment, not only had the cyst continued to shrink, but I was about to ovulate! WHAT! I couldn’t even believe it!! And this was my opportunity!

I was faced with the ‘now-or-never question’…do I get a sperm donor? Do I see if my new-ish boyfriend of a few months is willing to do the deed??!

I took all the information I needed discussed it with Will, and well, he was 100% on board.  I got pregnant that cycle with my now 2-year old son, Wyatt!

Where are you on your infertility journey now?

After I gave birth to Wyatt, I knew I wanted more children. I had a complicated pregnancy and birth, but we returned to the fertility clinic at 6 months post-partum to discuss number trying for number 2. But as I stopped breastfeeding I got pregnant, without intervention. Unfortunately that pregnancy ended in an interstitial pregnancy (this is a uterine, but ectopic pregnancy: the pregnancy is located outside the uterine cavity in that part of the fallopian tube that penetrates the muscular layer of the uterus.) I didn’t even know what an interstitial pregnancy was.  I went for a D&C (Dilation & Curettage, a surgical procedure to remove the fetus) and also opted to take Methotrexate.  This is a drug usually given to cancer patients, but as the pregnancy was in a challenging location the drug ensured that no more cells from the pregnancy would remain.

Two weeks after the treatment I began to experience severe pain on my left side (keep in mind I didn’t have a tube or ovary on the left).  I discovered that my hCG beta levels were still rising, and not declining like the should have been; this meant that I was pregnant but they didn’t know where. I presented to the Emergency department with severe pain and they admitted me for pain management. Being that I work in healthcare I knew this was a “BS” diagnosis, they didn’t believe I was in pain and in their eyes had done everything- Ultrasound showed no internal bleeding, D&C and Methotrexate- what else could be done?

The doc told me “well I can take you to surgery but I’m going to pull your right ovary if we do.” My heart sank, I was in pain, but I did not want him to just pull my ovary because that would put me in to auto-menopause and shut down my baby factory.  I went to bed to try and sleep off the pain. At 2 am I woke- I thought I was dying. I have never experienced pain like it in my life. I rang the buzzer and the nurse came. She was cold and heartless, standing at the door she told me “your Dilauded isn’t due for another hour.” I knew I didn’t need more pain meds, I needed a doctor, RIGHT NOW! The pain was like no other. 45 minutes of excruciating pain, I finally I found someone to help me as they walked past my room, they called rapid response, and within 10 minutes I was being prepped for the OR. My uterus had ruptured and I was bleeding internally.  With my 6 month old baby and husband at home, I didn’t even know if I was going to see them when I woke up – not to mention having more children. I was terrified.  Thankfully I am still here to tell my story. With another surgery under my belt, my journey just got even more complicated.

Four months post op I returned to the clinic to talk about trying to conceive #2… again!! I was scheduled for another HSG to check the integrity of my uterus after the surgery, but amazingly against all odds, I was actually pregnant with my now 7 month old daughter, Miss Emma.

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Has infertility changed your relationship with your partner? 

Will has been super supportive. But given he had “no issues” I always felt guilty for having all the doctors’ appointments, the bills and meds. I don’t think it really changed our relationship, but at times I did feel like I was a bit of a burden.

How has infertility impacted you financially? Did your healthcare insurance provide coverage for infertility treatment?

It makes me nervous to even think about how much we have spent between surgeries and medications! When I was on progesterone to support my three pregnancies, each time it was about $800/month.   My insurance didn’t cover anything; and to date we have spent about $40k.

How have you taken care of yourself physically and emotionally during your struggles?

After my first miscarriage I ate my way through every emotion. At the time, it seemed like a great idea until I found myself weighing in at about 240lbs. I knew I would never get pregnant weighing that much with PCOS, so I lost 80lbs, it was life changing. Emotionally, I felt so much better, and physically I knew I was helping my body.

How have your friends and family supported you through your journey?  Have you had any experience of lack of support or misunderstandings?  

Looking back, I wish I had seen a counselor or therapist to help deal with my losses, but sadly I didn’t have much support from friends and family, I was left to cope on my own. The whole miscarriage topic is so taboo, I was scared to even bring it up, and felt like I just had to sweep it under the rug and move on.

Telling someone who just lost their baby or is trying to get pregnant that “it was meant to be”, “God has other plans” or “everything happens for a reason” did not help.

I had this longing for a baby and I couldn’t understand why this would happen, it was horrible. I wouldn’t wish any of this on anyone.

What has been the hardest point of your journey and how did you deal with it?  

I think knowing that some things are just out of our control (as hard of a pill that is to swallow sometimes) taking things one day at a time, and just trusting the process helped me keep faith. Not giving up on my hopes of being a mother was my inspiration.

If you could go back in time, what advice would you give yourself?

I wish I had been gentler with my emotional health, and been more public about my journey. I am amazed at how many people have been through the same thing, and instead of hiding it and pretending like it isn’t an issue we should support each other.

As it’s national infertility awareness week, what message do you want to share about infertility to the general public? 

The most difficult part about my journey was when people told me “don’t worry it will happen.” Thankfully my story did happen, but I have friends that haven’t had their sticky bean yet.

Is there anything else you would like to share that I haven’t asked you about?

While I was going through my journey I loved reading your blog, it gave me so much inspiration and peace knowing there are others out there that are also in a similar situation ❤

Rebekah, I think you have made me cry twenty times already.  Through all your battles you have come out of the other side every time a true fighter.  It might not have felt like it at the time, but I can see it from how you never really gave up.

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Please leave a comment or message of support below for Rebekah and Will 🙂

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.

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.

Not forgetting Huckleberry

Speaking of not forgetting….this week my app ‘Glow’ I use(d) to track my periods told me that my period was due in 2 days!  Well that was a strange thing to say because I had marked “I am pregnant” on the app.  So I decided to open it up and see what was going on.  Glow was telling me I am pregnant still, so  I am not sure why it was telling me my period as due.  Anyway, it came up with a big advert saying download our ‘Nurture’ app, a follow on app to glow for pregnant women.  So I thought, well why not give it a go.  I had already used it once before when I was pregnant after IVF cycle 1 and so downloaded it off my cloud.  Once it installed I opened it up and this is what I was faced with…

huck

 

Are you kidding me???? Oh it was a stab in the gut. Yesterday I was 44 days overdue and Huckleberry was the size of a slightly bigger pumpkin at 46 weeks old!

I haven’t forgotten you Huckleberry. I promise you I never have.  But this was just too much.  I deleted the app straight away as I couldn’t deal with trying to figure out how to reset it.

The tears

I woke up like any other morning, rolled over and checked my phone to see what the time was.  I can’t help but check my notifications on my phone in case something exciting has happened whilst I’ve been sleeping (a pretty bad habit of mine)…if there is a facebook notification then I open up facebook.  This morning, bleary eyed I opened up facebook and there was a stream of lovely photos of my friends in the UK celebrating mothers’ day (it’s not mothers day here in the US)…it warmed my heart. I like mothers’ day, I’ve never found mother’s day difficult whilst trying to conceive.  Yes it kind of sucks that I’m not a mum yet, but I feel more association with the day to my mother and celebrating her. But……

This morning as I woke up, for some reason when I read a post about someone who was pregnant and celebrating being a mother, it triggered me.  I thought about how far along I would be if huckleberry had decided to implant a few inches lower in my uterus rather than where ever else he was hiding probably in my fallopian tube (we never found out exactly).  I would be 32 weeks pregnant with a nice bump.  I would be waking up, probably complaining about some pregnancy ailment.  I would be asking huckleberry how he felt like behaving today.  We would probably have the nursery almost ready…..maybe I would have bought that adorable onesie I saw last week in TJ Maxx…maybe, just maybe, I would consider my self eligible for mothers’ day today.  And so this morning, I quietly had a bit of a cry thinking about these things of what might have been.

I’m not to dwell on the ‘what ifs’…but yet it reminded me that there are many, many women out there who have mother hearts.  We might not be able to see them, but they are loved by many. So to you all…happy mothers’ day X

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Good plan batman

First of all, let me say a big thank you to everyone who showed us support by commenting on my last update.  It has been a really difficult weekend.  Full of emotional roller coasters.  Chris and I have been brought to the edge with our sadness and confusion about our second failed IVF cycle.  I couldn’t reply to your comments without crying.  I am sure some of you who have been there have felt that overwhelmingness.  I read each and everyone one and they mean a lot, so thank you for your support.

Today we had our follow up appointment.  Chris and I prepared for the meeting the only way we know best….by making a list.  We wrote a list of all possible scenarios for ways ahead on this pudding club hunt.  And then we individually wrote down what we felt about each scenario and exchanged our thoughts.  We discussed where there were differences.  It was difficult and emotional to do as we realised that we agree in some situations, but not in others.  It’s OK at this stage that we don’t agree or have the same point of view, but it was bloody hard and we had some very raw and honest conversations.  We used up a few boxes of tissues 🙂  But what was good about this exercise is that we were ready to come to this follow up appointment prepared for whatever the doctor was going to suggest doing next.

When my doctor spoke to me on the phone to tell me the bad news that our IVF cycle had failed she mentioned poor egg quality, I took away bad things from this when I needn’t have.  This was just my doctor’s first impressions report, she hadn’t really looked into my case in detail or reviewed my history.  But this is what she did at today’s appointment.

Our doctor was very positive and believes that our best chance is to try again.  We expected that, but she ruled out egg or embryo donation for us or the necessity for genetic testing.  Our chances are still high more than 50% success.  We will make a couple of minor adaptations to our next cycle with my medication protocol by switching from antagonist protocol to Lupron (Down regulation) protocol.  I am a good responder to stimulation so she believes this may help improve the egg quality.  We will also carefully review our Day 3 v Day 5 transfer options at the time.  I had some excellent Day 3 embryos this time around, similar to my first cycle when I got my positive.  May be my embryos don’t do as well in the culture afterwards.

But before we go into another round of IVF, I need to have a hysteroscopy.  This is a small surgical procedure where the doctor inserts a camera through my cervix to look at my uterus and fallopian tube opening closely to check for any potential damage from my suspected ectopic pregnancy, scarring or inflammation as well as checking for endometriosis and taking a small biopsy for further testing.  So I am scheduled for my procedure in two weeks time!

We have a plan we are both happy with.  I felt a huge relief off my shoulders because our doctor was genuinely positive for our next round of IVF – and we pushed her about it too (well Chris did!!) – there was no BS-ing!   So all things going well after the hysteroscopy, we are looking at an April IVF/ICSI Cycle:-)

Thank you all for sticking with us through this, it has been hard, but you make it all the better!!  XXX

butterfly

At least you know you can get pregnant

I think I’m quite a tough lady when it comes to receiving mis-informed and unintentionally hurtful infertility advice from the more fertile.  I experience it frequently because I am open about our infertility journey.  I forgive them because I know they don’t understand infertility as a disease and they only mean the best for me.  And I also know they couldn’t possibly truly understand how I feel because it has never happened to them.  Similarly like to people who have suffered from other diseases such as anorexia or depression or cancer, I don’t know what it is like or how it feels…I would never offer my uninformed opinion about treatment options or ways to overcome the symptoms of these diseases.  I won’t offer consolation that attempts to make them feel better about their disease.  Rather, I will offer my ear and my hand.

So why is infertility any different to any of these other diseases in how we talk to other people about them?  Why do so many bloggers end up writing about this struggle?  Is lack of education really the cause of this? May be other disease sufferers experience similar unhelpful comments too.  I really don’t know.

Have you seen that film about depression where friends and family offer their advice about depression, but the recipient of the advice is portrayed as a cancer sufferer?  The point of the video is that you wouldn’t say these things to someone who has cancer, so why would you say these things to people who have depression?  I think it is a great educational video (it’s at the end of this blog post if you want to see it).  Ultimately, I think there needs to be a film in a similar light about infertility.  I know there has been outrage on some forums of comparing infertility to cancer.  I understand that it is outrageous because people generally won’t die from infertility.  Comparing depression to cancer may also outrage many people as well…but depression can lead to suicide, it can kill too, but it is not a well understood.  So what is my point?  My point is that there are helpful things you can say to someone with infertility, and then there are unhelpful, even hurtful, things you can say to someone with infertility.

I have written about things that hurt, what to say, what not to say to someone with infertility many times before (ignorance is bliss, a voice of the child free family, Grow some thicker skin, you are so lucky you don’t have kids, Understanding: #YouAreNotAlone, Reblog from Que Milagro: Pardon Me While I burst into flames).  Today’s post adds to this list.  Today I am writing about one particular comment I have received multiple times since our loss from IVF cycle 1 from both fertile and infertile people:

“At least you know you can get pregnant”

I’m just going to put it out there straight away.  There is nothing consoling about this.

I get that there are many women who have never seen those two pink lines, me being one of them until our fist IVF cycle.  So I understand how hard it is to get negative after negative 25 times in a row.  But being pregnant  and losing a pregnancy is not consoling, knowing that I ‘did get pregnant’. I didn’t stay pregnant.  Maybe they would say “But it’s one step in the right direction”, yes perhaps, but it was then like ten steps back after our loss.

Would you say this to someone after they lost their baby during childbirth?  No.  Would you say this to someone who lost their baby in their third trimester? I doubt it.  Would you say this to someone who has suffered from recurrent pregnancy loss and miscarried 6 times? Definitely not. Would you say it to someone with secondary infertility? For goodness sake, NO.  So why does this need to ever be said at all?  It makes absolutely no sense at all and simply reminds me that we simply FAILED.

I am due to have my first beta test on Friday and in some ways, I am afraid of a positive than a negative.  Don’t get me wrong, I WANT A POSITIVE MORE THAN ANYTHING.  But I am afraid of when the positive comes, I know that even if this is my one successful pregnancy, my journey through the first trimester is going to be a psychological challenge.  If we ended up in a similar position to last time with a slow rising beta levels, pregnancy of unknown location suspected ectopic, yes it will be easier knowing the process the second time around, but it will be bloody damn hard to go through it all again.  And that is why I cannot accept the statement  “At least you know you can get pregnant” as consoling.

exhausted

IVF Diary Vol II: 15th Jan 16

Medication(s) administered and dosage(s). Gonal-F 300 iu & Menopur 150 iu.  Chris really is great at this injection thing.  I prepared the Gonal-F whilst Chris prepared the menopur.  We both read the instructions to remind us how to mix everything up, but like riding a bike, it was easy this time around.  Chris was a little bit nervous, but he needn’t have been, he did a great job.  I even looked down at the needle as he was injecting it – I am still not good at watching the needle break the skin though :-s.  The menopur did burn a bit as it went in, but it wasn’t quite as bad as I remember it to be.

ivf2_day1Stims

Medical procedures undertaken. Nil.

What are my symptoms? Period started right on cue yesterday morning!  Hot flashes and a bit of dizziness a couple of hours after my 2 first injections of this cycle.

How do I feel today?  A little bit annoyed that my plans to have a more relaxing stim period and 2WW are falling to pieces. Some short turn around-high impact work may fall on my plate next week.  I would have to forgo some of my steadfast principles for quality work and accept that in this case a 40% solution can only be delivered in the time lines given.  I have stuck to my guns though to some extent – where I was going to be taking the whole week off work, I am now only taking Monday and Friday off.  Tuesday and Thursday I will be working from home, Wednesday I’ll be in the office.  As we talked about this potential work, I started to feel sick to my stomach.  I started thinking back to last time around when I was trying to get my project finished and how stressed I was feeling about balancing the IVF process and work.  I let down my quality levels then – no one noticed (of course I noticed), in fact I got lots of praise for that piece of work.  Last week when a senior boss praised this work in front of the whole division I sat there quietly proud, but felt a bit sad that I had accomplished that with little help during a shitty time of IVF, followed by the whole ectopic pregnancy thing and ultimately miscarriage.  My boss has been great by not dumping everything on me right now, he quite easily could have done, but he didn’t so I appreciate that, but I can’t quite help  thinking about how IVF is holding me back from doing my absolute best.  I don’t think my colleagues around me think like that (fortunately they are all smart, intelligent people who know me), it is just myself I am fighting with these thoughts.

All that being said, I’ll talk about something positive.  We decided to go out for dinner at our local restaurant to celebrate surviving and nailing those first two injections.  Chris deserved his beer!  As we were finishing our meal the power went out in some of the building.  There was a storm that evening so it must have knocked the power out.  I said don’t worry, we are on a different power grid to our neighbours over the road (the block our restaurant was on) and last time their power went out, ours stayed on.  As we walked back, we realised that our grid was out and our neighbours’ over the road was on! Typical.  Fortunately we are well prepared for such events (for hurricanes and other storms etc), and carried on with the power of candles 🙂  It was a little bit romantic…I snuggled up in bed preparing for the power to be out all night and the temperature to dip.

power_out

Power outage = Candle lit bedroom!! Fortunately we have quite a few candelabras left over from our wedding table decorations still 😉

But then came the hot flashes!  I needn’t have worried about keeping warm, it seemed the drugs were doing a great job of that for me!!

Any results?  Estradiol <20 (as it should be, the same as IVF 1).  Progesterone <.2 (as it should be, the same as IVF 1). FSH 3.21 miU/ml (IVF 1 was 9.29, in 2014 it was 6.8) LH 0.771 miU/ml (IVF 1 was 3.48, in 2014 it was 4.9).  My LH level came up as red in my results…this means it was out of the ‘normal’ range, it is very low.  But not by much.  So I looked into it.  Although lower FSH is good, low LH is not good…apparently calculating the FSH-LH ratio and knowing the LH levels are good predictors of IVF outcome.  Let’s just say that I read several scientific reports, plugged in my numbers and the stats aren’t good.  But, the good news is that I don’t care! Why?  Because women with this kind of level and ratio still got pregnant.  And I am going to be one of those women in 4 weeks time 🙂 In your face science!!! **

What’s next? The same injections Sat, Sun, then monitoring appointment on Monday morning.

Weight. Work stress = nom nom nom bads.  But I did do the mixed martial arts P90x3 routine and pushed myself hard, so I don’t feel so bad.

Waist.  NSTR

Boobs. NSTR

Hours of Sunshine 🙂 Still NONE.  Let’s see if the sun comes out this weekend!

Fun Activity to keep Dani from going insane. IT’S FRIIIIIIIIDAYYYYYYY!!  I need say no more.  Surprise date night.

*Notes.  I take First Response Reproductive Health multi vitamin gummies (pre-natal) and CoQ10 200mg gummies daily.  NSTR = Nothing Significant To Report.

** Reserve right to have science egg in my face later

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning