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 🙂

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Alisa #FlipsTheScript

When I first met Alisa and Gloria they were about to embark on their first round of IVF – they had so many questions about the grueling treatment they were about to embark on.  I was struck by their strength as they had faced incredible set backs on their journey to build their family.

Alisa 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?!!

Gloria and I have been together for 8 years this summer and married for 4.  We were the young age of 19 when we met (I’ll be 30 this year ahh).  I had been working as a preschool teacher for several years when Gloria started working at the same school.  I actually met her family before as I was her little sister’s teacher.  We spent several years as best friends before we started dating.  Gloria has been in the Navy a little over 4 years which is what led us to Virginia.

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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?  

When we decided to start a family the only obstacle we thought we would face was the obvious one, two females and no male.  Surprisingly, there are many companies that sell the necessary components to help lesbian families or families with male factor infertility.  We originally met with a Reproductive Endocrinologist (A doctor specializing in the art of conception, all things reproductive and the disease infertility) but only because he specialized in helping same sex couples start a family.  It never crossed our minds that we would actually need him for his specialist knowledge on infertility.

I went through all the initial testing before we did IUIs (Intra-Uterine Insemination), some results were a little off but the doctors were not concerned.  After several failed fertility treatments which included rounds of birth control and hormones they started to question why I was not getting pregnant.  With further testing the doctors discovered a very large cyst on my ovary.  I always had extremely painful cycles as well as some other symptoms that at the time we did not know were related.  My mom was diagnosed with Endometriosis at a young age but she had three kids so the thought never crossed my mind.  We decided it was time to do a laparoscopy to see what was going on.

I remember waking up from surgery and asking Gloria how bad it was.  All she said was “stage IV.”  My heart sank I knew there was a huge possibility of this diagnosis but I never thought it was that bad.  I learned that I have what is called a frozen pelvis –

I had so much scar tissue that all of my reproductive organs are fused together.  Although it was a relief to have a diagnosis my world came crashing down.  The doctor said I had less than a 5% chance of getting pregnant with the current treatments we were doing and he suggested IVF (In-Vitro Fertilisation).

We took some time to think about it but ultimately decided it was what was best for us.  Since Gloria is in the military we were able to go to Walter Reed for the IVF treatment.  We spent two weeks in a hotel room going to early morning monitoring appointments.  The five days we waited to find out how many embryos we had were the longest drawn out days we had faced thus far.  We ended up with 6 beautiful 5 day embryos.  Our first cycle we did get pregnant, but our numbers were never high enough for viability.   We went on to do 2 more frozen embryo cycles. In total we did 5 IUI’s and 3 rounds of IVF.

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Where are you on your infertility journey now?

Gloria and I are happy to share we gave birth to twins on Christmas Day last year!  We have a boy, Jensen, and a girl, Reese.  We still have two embryos left and have talked about trying for more children, but for now we are enjoying our two beautiful babies.

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Has infertility changed your relationship with your partner? 

I think you are crazy if you answer this question with a no.  I was terrified this journey would tear us apart.  I read so many stories that couples went their separate ways after years of infertility.  In the end this brought us closer than I ever thought it would.

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

Infertility is expensive!  We were lucky enough that many of our diagnostic procedures were completely covered by insurance, largely due to the coverage from Gloria being active duty.  However for IVF treatment we had to go to Walter Reed who offer military families a “discounted” price.  It was still extremely expensive but nowhere near what some couples pay.

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

Towards the end of our journey I started acupressure and it was the best thing I could have done for myself.  I had become so desperate that I was willing to try any secret or tip that would get me pregnant.  And believe me, I tried them all.  I never realized how much it would help me, both emotionally and physically. The woman I saw weekly was amazing and I left each appointment feeling like a new person.

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

Most of our friends and family did not understand the magnitude of what we were going through.  Like most people, they thought we were two women trying to get pregnant and our only struggle was lack of a male counterpart.  Or if they did have some understanding of our situation the idea of infertility was such a foreign concept they didn’t truly comprehend our struggle.

Even after several failed treatments and surgery we still had a hard time relaying what exactly was going on.  We were met with harsh words and lack of empathy.

It did not help that we were constantly surrounded by pregnant woman.  I remember attending a baby shower for a friend, sitting next to another pregnant friend, waiting to find out the results of our first IVF cycle and a lady saying to me “you probably won’t ever had kids because you have two dogs and people with two dogs don’t have kids!”  I sat in the bathroom crying, trying to compose myself because we all know the worst place for an infertile person is a baby shower.  Looking back I realize how insignificant the comment was but at the time it was heart breaking.

We were also interrogated every time we joined in a conversation about children. Our fertility struggles would come up, and we would be asked why we do not “just” adopt. I am not certain if all couples struggling have heard this or people seem to think it is appropriate to tell a lesbian couple to “just” adopt. I could go on for pages about how this is one of the most insensitive comments that was just freely thrown around.  For couples going through infertility, I know most have thought about adopting, however, “just” is not fair to the children that are in the system. This is a disservice to these children. It also does not account for the families to take in these children as their own, to later have them ripped out of the homes that were built around them. We have discussed adopting children, as we want a larger family. We also know that when the time comes, it will be as hard as our journey in the last 3 years, with a possibility of it being even harder.

I would like to give a shout out to my little sister.  I can’t even tell you the amount of crying phone calls she received from me.  And she would always answer whether it was 3 in the morning or 8 at night.

I would call her with my crazy symptoms and she would google them so I wouldn’t read all the horror stories.  She always checked on me to see how I was, even when I was at my worst. She was the first person I called when we found out we were pregnant.

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

The hardest part of our journey was after the loss of our first IVF cycle.  The doctors gave us such hope that it would work the first time we really never expected it to fail.  I was sitting at my desk when I got the call from the nurse that our numbers were not doubling like they would expect and I should prepare for the worst.  I texted Gloria that I needed her to come home and by some miracle, she was able to get out of work early.  It was the first time she cried. We just sat there holding each other in disbelief. I told her that day I didn’t want to try again.

I was done and my body couldn’t take any more.  I spent almost a month saying we were done, just feeling so angry and alone.  Shortly after was Christmas, I remember hanging up our stockings and thinking I want to hang up stocking for our children.  I told Gloria I wanted a baby for Christmas the next year.  And boy, did she deliver!

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

Just breathe and have a drink! Don’t obsess over all the details so much and just take each day at a time. Most importantly, do not give up hope.

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

I would like the infertility community and the general public to know that the LGBTQ community is in this too.  Gloria and I met so many people that just assumed we did not understand the heartache and loss of infertility. We are not different to any other couple that wanted to start a family and faced the heartache of experiencing fertility issues.

Please leave a comment or message of support below for Alisa and Gloria 🙂

#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.

Knowing what you’re missing

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

Secondary infertility is knowing what you’re missing.

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

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

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

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

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

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

 

Our Frozen Embryo

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

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

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

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

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

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

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

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

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

Everything happens for a reason or does it?

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

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

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

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

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

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

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

Infertility round 2

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

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

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

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

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

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

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

Back again

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

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

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

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

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

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

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