My First Advocacy Day

Every year Resolve – the national infertility association, organises an advocacy day at Capitol Hill.  What does that really mean?  It means that we get the chance to tell our senators and representatives what we really need to help build our families- IN PERSON!!! We get to advocate on behalf of the 1 in 8 couples diagnosed with the disease that is infertility and for our future generations on issues that help Americans to build their families.

I’ve always wanted to go to advocacy day, but have failed miserably because of work travels, this year I was able to get away from work for a few days to make it to Washington DC.  Unfortunately Chris couldn’t make it with me so I went alone and met up with some of my local infertility support group members there.  But I wasn’t really alone, I met some incredibly inspirational people who have been advocating and volunteering for YEARS!!!  And an added bonus I also met up with Heather from Meet the Hopefuls blog!!!!! Heather was the state Captain for California ☺️

So what did I do??

Firstly I attended a welcome reception on Tuesday evening prior to the big day.  Here we got a chance to meet our state captain and others from our state, figure out who had done this before, and who were our mentors.  Virginia was 40 something people strong! We were amongst over 200 people who had traveled from across the country to advocate.  WOW!

It’s quite nerve wracking – I mean, I am British, I only really know a little about how the US legislation system works (mostly from TV dramas ;-p), so there was a lot for me to learn in addition to what the legislation being advocated for was and it’s history.  Having experienced people and mentors available helped take away those nerves.  Us first timers weren’t alone.  We also had some online training a few weeks before to introduce the bills we would be asking representatives to co-sponsor and vote for.

Part of the welcome reception included a few speeches, one of which brought me to tears.  A veteran who had been injured in Afghanistan had been advocating with his wife for years to make infertility covered by the VA. Their infertility was directly caused by the injuries he suffered and his country wouldn’t help him build his family.  What an insult to his service and the life he gave to his country.  But in 2016 congress authorised funding to provide adoption assistance and IVF to those veterans who had a service connected injury or illness that caused infertility.  As a result of the funding this veteran has been able to have a child.  And they brought their 15mth old with them.  It was so moving to hear what a difference advocating can make.

Yeh, I cried, both tears of happiness and sadness.  Sad because the funding for the veterans was going to expire in 2019 so we needed our congress to support a new bill that would make infertility coverage permanent and overturn the ban of IVF in the VA.  My head actually hurts thinking that their country was not supporting their injured veterans.  I just can’t understand why anybody would be against it.  The only reason is money.  That is it.  So far just over 200 veterans have sought care under the funding that expires in 2019.  But as we all know, the process of infertility treatment and adoption can take years.  So some of those 200 veterans might not be able to continue their treatment if nothing is changed.  And then there are those veterns who don’t know they want to build a family yet, and in 5 or 10 years when they come to have children realise they need help, when it’s not there. It just makes no sense Congress!!! Support your veterans in building their families – it’s a no brainer!

I went back to my hotel excited for what the next day would bring.  I set my alarm for 5.30 AM so I could make it into the city to start our training at 7.30AM.  I actually found it hard to sleep thinking about it all.

The next morning, I made my way into the city on the metro as I decided to stay on the outskirts of the city to save a bit of $$$.  DC hotels aren’t cheap.  I had missed out on the block booking that Resolve had organised.  I spent a lot of my journey on the metro researching the Senators and my house representative.  What were their thoughts on family, veterans, adoption, healthcare and finance issues.  Did they sponsor or co-sponsor any of the bills we were advocating for already?  Did they have family, do they have any links with the infertility community already?  None of the senators, Mark Warner and Tim Kaine, or my representative, Donald McEachin, had co-sponsored yet, so I knew we had some work to do.

When I checked in I was given my schedule for my appointments and received all the supporting materials I needed, including a cheat sheet with information and facts that I would unlikely be able to remember off by heart!  My schedule was actually really good.  I had appointments at 11AM, 1230PM and 2.30PM.  I thought that was plenty of time between appointments, but in reality it was go, go, go all day.  After I checked in and got a hearty breakfast, we sat down in our states and was given more information about the day.  We were told a little bit more about the legislative agenda Resolve was advocating for…

S700 and HR1681 – Women Veterans and Families Health Services Act.  basically giving veterans permanent access to infertility treatment and support through adoption for injured veterans.

S937 and HR2476 – The adoption tax credit refundability Act.  The adoption tax credit is good, but doesn’t support low to middle income families, this legislation will make the tax credit refundable which will help these families who are more likely to foster to adopt, helping to take children out of foster care saving money in the long run.  It’s fiscally responsible, helps children out of the foster care system and helps building families.

Resolution 864 – PCOS awareness month.  This will designate September 2018 as PCOS awareness month.  It has already been passed in Senate.

Medical Research Funding for FY 2019 Appropriations.  Requesting funding of $1.531 billion for FY19 for research related to reproductive disorders such as infertility, PCOS and Endometriosis.

Finally….the most exciting and hot of the press news was announced.  A bill was being dropped on Advocacy day that will have a huge impact, the Access to Infertility Treatment and Care Act.

Wait, what???? YES! what an amazing piece of legislation.  We need to fight for this.  We fight this everyday in our own lives dealing with infertility.  This shouldn’t be a fight we have to have, but we do.  I know the benefits of great infertility coverage, I have 6 IVF cycles in a lifetime covered in my plan.  Infertility is stressful enough without dealing with financial crap.  This bill will require that health plans offer treatment for federal employees (including TriCare) diagnosed with infertility as well as cover fertility preservation for who undergo a medically necessary procedure that may cause infertility, such as chemotherapy.  The bill is being sponsored by Congresswoman Rosa DeLauro (CT-03) and Senator Cory Booker (NJ), they made videos telling us about the Bill and thanking us for advocating.  It was so moving.  I cried. Again.  (yes, there were lots of tears from me, I planned for it and didn’t wear mascara…more to come….!!!)

After being given all the knowledge we needed, we broke out into our states to figure out who was going to say what, to who and when.  With 40 virginians we were given 2 appointments focusing on different issues with each senator, so that meant there were about 20 people meeting with the Senator’s aides (or staffers).  I quickly discovered that I was the only one in my meeting with my representative Donald McEachin.  This meant I would be doing most of the talking and asking!  I had a mentor assigned with me – Chris, who was a guest on my blog during NIAW with his wife Candace.  Chris was fantastic, he was the state Captain and really was font of all knowledge and experience so I felt less nervous about and was more excited.  In addition to figuring out who was going to say what, we also had letters from other states and areas that were not represented by someone in person, this meant we had to visit the offices of these representatives and ask for an impromptu meeting with someone to talk through the issues.  We figured out who was going to deliver what and where.  At the time I had no idea how much work this was actually going to be!!

Once we had a game plan for the day, we headed off to Capitol Hill, clutching our bright orange folders, sporting our orange infertility awareness Ribbons.  This proved to be very helpful during the day to spot others as we wondered the halls of Capitol Hill.  I hadn’t realised how easy it is to knock on the door of your Senator or representative (If you can find their office that is!!)

Our first appointment was at 1130AM with Senator Tim Kaine (Democrat) and we met with his aides for tax issues.  The only place that could fit all 20 or so of us was in the hallway, so there we were talking about our issues, asking for the Senator to cosponsor the bills.  Someone from our group gave their personal stories of struggles.  I cried. And at the end, I handed over all the letters from other constituents asking for what we had just asked for, as well as some more supporting information for the Senator to consider.  It was pretty easy, yet empowering.  This was our opportunity to create awareness and make change happen.  Right there, right then.  15 minutes.  That is all the time we had.

We had some time to deliver some letters to a few other Senators, so we broke up into smaller groups to achieve our mission.  I went with a lady who had been to advocacy day several times before and another who was a newbie like me!  Before we went into the office we did a quick bit of research on the Senator to see what their position might be in anticipation of getting a meeting with one of their staffers.  The first Senator who’s state will remain nameless, there was very little we thought they would be supportive of.  So what did we have in common?  When it comes down to it, a family.  He has children, so there was something at least! After all we are advocating Pro-family!  Unfortunately no one was able to meet with us.  But we dropped off the letters from his constituents, material about the bills we were advocating for and collected a business card of the relevant aide to contact later on.  We did the same with two other Senators before we ran out of time and needed to get to our next appointment.

My second appointment was at 1230 with Senator Mark Warner (Democrat) and we met with his aide for veteran’s health.  This time we had different people speak, and I cried again when someone gave their personal story of infertility struggles, and a lady who worked as an adoption social worker told her perspective.  The other group managed to meet with the Senator and snag a photo with him!

Time for some lunch!  All our other meetings were the other side of the Hill, so we managed to get a ride on the underground trolley that connects with the Capitol building.  I didn’t get a picture, but I felt like I was in a James Bond movie!  very cool.  We found somewhere to eat eventually and collected ourselves in preparation for my meeting.

My third appointment was with Congressman Donald McEachin at 3PM.  This was a far more intimate meeting with one of his aides, we sat in the Congressman’s office, which was the Pi Office – 314!!!!! We talked about the issues on the table and it seemed like Donald McEachin would be very supportive of what we were asking for.  I am hoping to see his name as co-sponsor!!  Just as we were finished he came into his office, so we introduced ourselves and why were there today, and we were able to get a photo with him!

We had some time to do more letter and material drop offs with other Reps and emptied our bags of letters.  We delivered them all!  Unfortunately there was a health committee meeting going on so many of the relevant people were not in office available for any impromptu meetings.  We managed to find somewhere to get coffee – there was a dunkin donuts in one of the house of representative’s building’s basement.  I made the joke that America literally does run on Dunkin.  True fact.

The final meeting of the day was by far the best.  I joined Chris, Candace and Allison from my local support group on their meeting with their representative, Bobby Scott.  I live on the corner of three congressional districts so I actually work in his district and was excited to be able to talk with him too.  His aide listened with intent and understanding, she asked some awesome questions.  Including what we were doing to support women and families of colour.  A great question because it is so important.  It seems that the congressman too would be supportive of all our issues.  Half way through our meeting he came in to meet us and took a picture with us!!! He had just come from a foster child shadow day and had the most amazing tie on.  So appropriate and so timely for what we were advocating for.  His staff were so warm and friendly it was the perfect end to the day.

To round off the day we all met up for refreshments and a taco bar, swap our experiences and sit our weary feet down.  I think I spent the first 6 hours of the day on my feet!  Luckily I was well prepared and wore flat shoes.  An absolute must to survive the day.  I left the day feeling excited that I had the opportunity to make important people in the legislative work understand how they can help build families in America.  For my American friends, my virtual friends and for my daughter, an American citizen.

I’ll be going again next year for sure.  Next year this new bill will be coming of age, and may be even issues relating to Personhood bills may be on the agenda.  What I do know is that there is still a lot of work to do.  So who’s joining me???!!!

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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 🙂

#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:

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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….

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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.

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.

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.

Creating a family friendly culture in the workplace

How important are family friendly policies and benefits in organisational culture?

Is there a correlation between a high performing organisation and a family friendly workplace?

It seems obvious that the answer is yes…and yet, there are many organisations who put family friendly policies and benefits at the bottom of the pile.  Family friendly policies and benefits are known to increase retention, recruitment, morale and productivity.  Arguably, these policies and benefits come at a cost to the organisation, so do the benefits outweigh the costs?  It can be difficult to put a figure on this type of benefit and return on investment.

There is also the unseen or lesser known part of family friendly policies and benefits that organisations can adopt; these are related to family building options such as infertility treatment insurance coverage, adoption grants, sick leave (for miscarriage or medical treatments), flexible working and egg freezing.

Simply having these policies and benefits will certainly contribute to a family friendly culture…but there is something deeper than these – a family friendly organizational culture that builds on the policies nd benefits.

You may have heard the saying – “Culture eats strategy for breakfast”. This simply means that no matter how good the policies are they need to be supported by the organisation’s culture.

Going beyond the policies and benefits, leaders and staff need to develop the values and behaviours that make up the family-friendly culture:

Open Communication – on both work/life needs and institutional priorities.  Staff need to be able to freely communicate to their leaders and vice versa without incrimination or judgement. The ability to give 360 degree feedback freely about what works and what doesn’t contributes to this open communication environment.

Flexibility – at all levels of the organisation.  Creating an environment that makes it OK to ask for flexible working or time off by creating space to.  Believing that employees are less loyal or productive for asking for these creates will creates negative culture.

Commitment – recognition that a good work/life culture benefits everyone.

Fairness – fair doesn’t mean equal; leaders need to understand that one size doesn’t fit all, applying family friendly policies consistently is important.

These values can’t be written down in policy or given away as a benefit…they have to be enacted out by the people we work with every day and inspired by our leaders in our day to day lives.

What other values and behaviours do you think make up a family friendly culture that we can live by in our workplaces, including family building?

Do your leaders say they are family friendly but don’t live by the values they preach?