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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How to make big decisions when dealing with infertility

Throughout infertility we are often faced with the kind of decisions that are life changing.  Life changing decisions for the more fertilely inclined will probably involve: whether or not to get married, which house to buy, where their next holiday destination will be, what career to choose, whether to stay or quit a job, and of course, the classic – whether they should tell their best friend that their partner is cheating on them.

For us infertiles it might also include whether or not to re-mortgage the house to pay for another round of IVF treatment, adoption, surrogacy or a.n.other expensive treatment, whether to undertake genetic testing of embryos, which body part to sell for the exuberantly priced hormonal medications we have to buy or whether to terminate a pregnancy to save our own lives.

Ok so I might have trivialised the decisions fertile people make (Please don’t take offense!), but I think you get my point.  Making decisions throughout the process is tough.  Fortunately for me, this is my line of business…I help the military make tough decisions, whether it is on operations or in peace time, I help them to see the wood for the trees.

So there are a few of the more simple techniques that I can show you that you might be able to use to help you when you get stuck in a rutt.  They are also useful to work through with your partner.  In-fact, it is is even better if you do work them through with your partner (or your BFF, sister or other close relative).  Getting an outsider’s perspective from someone who you trust can be helpful (obviously you don’t have to listen to them :-)).

I’ll order the techniques in difficulty, starting with the easiest first…

PLUSSES, MINUSES, INTERESTING (+, -, ?)

  1. Take out a large blank piece of paper and write at the top of your paper the dilemma you are trying to resolve.  For example. Take methotrexate treatment to terminate suspected ectopic pregnancy.
  2. Draw three columns down the page, each with the heading: Plusses, Minuses, Interesting.
  3. Start with the Plusses column.  Think about what the likely positive outcomes would be if you took the action.  Write each point down with a plus sign”+”.
  4. Next think about the likely negative consequences if you took the action. Write each point down with a negative sign “-“.
  5. You may also write down things that are interesting about taking this action – these might be outcomes that you are simply unsure of what the future might hold.  Write each of these down with a question mark “?”.
  6. Simultaneously get your partner to follow the exact same process.  Make sure they write what they feel, not what they think you want them to write!!!  This is a time for honesty.
  7. Now compare your lists and talk about the differences you might have and why.  If you don’t understand something on each other’s list then use the couple’s validation technique (described here) to help you explore each other’s feelings.  It is important to explore your differences and understand why they might exist.
  8. Hopefully a conclusion will fall out of this list writing.  If it doesn’t, then the dilemma you are facing is probably too complex for this technique, you may want to try another approach.

6 THINKING HATS

This is one of my favourite techniques!  You can do this on your own or with your partner, or as many other people as you like (ideally no more than 6 people otherwise it gets a bit chaotic!)  This technique makes you think with 6 different perspectives and helps you to organise your thoughts.  Edward De Bono who created this technique says:

“The main difficulty of thinking is confusion”.

He is quite right, and this technique helps to overcome a lot of the confusion in our minds.

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  1. I like to have 6 separate blank pieces of paper ready. 1 for each of the 6 hats.
  2. Take your first sheet of paper, and write at the top: THE WHITE HAT – FACTS & INFORMATION.  The white hat makes you think about data and information.  It is used to record information that is currently available and to identify information that may be needed to help with your decision.  I.e. questions you may need to ask your medical practitioners.  Now think about all the facts you have about the problem you are facing.  For example, costs $$, available budget $$, dates, times, who is involved, who is not involved – any other facts or information you may have.  Write all these down.  Don’t forget to add any questions you may have that you simply do not know the facts of at that very moment – this is important!  Once you have run out of facts and information…move onto the next step.
  3. Take your second sheet of paper, and write at the top:  THE RED HAT – FEELINGS.  The red hat is associated with feelings, intuition and emotion.  this hat allows people to put forward their gut feelings without justification or prejudice.  Now write down your gut feelings you may have.  For example: “This drug is going to kill my immune system so I know I’m going to be sick for a long time after I take this injection. I don’t want to be sick anymore, I’m sick of being sick”.  Once you captured your feelings move onto the next step.
  4. Take your third sheet of paper, and write at the top: THE YELLOW HAT – BENEFITS.  The yellow hat is for a positive view of things.  It looks for benefits in a situation.  This hat encourages positivity even with people who tend to be more critical.  Now write down all the benefits you can think of.  Try to see the positive light when ‘wearing’ this yellow hat.  Once you have run out of positivity (!!) move onto the next step.
  5. Take your fourth piece of paper, and write at the top: THE BLACK HAT – CAUTIONS.  The black hat relates to caution.  It is used for critical judgement.  Sometimes it is easy to spend a lot of time focusing on this hat.  Now write down all the issues or downsides you can think of.  It is often easy to be the critic.  So for every negative, try to match it with a positive (using the yellow hat list and add to the yellow hat list if you need to).  Once you have finished being negative, move onto the next step.
  6. Take your fifth piece of paper, and write at the top: THE GREEN HAT – CREATIVITY.  The green hat is for creative thinking and generating new ideas.  This is your creative thinking cap.  Review your list so far.  Try to think about how you might want to overcome some of the negatives on your list – think creatively!!  You could try writing something crazy or wacky down to start with, then try to turn that crazy idea to something more realistic.  This can be difficult to do on your own!  Get some thoughts from other people!!  It is important at this stage to not immediately put down any idea your partner may make.  All ideas are good ideas when ‘wearing’ the green hat.  When you are ready move onto the final step.
  7. Take your sixth and final piece of paper, and write at the top: THE BLUE HAT – CONTROL.  The blue hat is the time to think some more about the thinking you have just done!  The blue hat reviews, summarises, concludes and makes decisions.  Now is the time to review your other 5 sheets of paper, add any last final ideas (it is OK to go back and look for any gaps in any of your 5 hats)…and time to discuss with your partner, similarly to the +, -, ? technique resolve differences in opinions and make some decisions.

Hopefully this technique will help you consider all sides of an argument and help you find some alternate points to your specific dilemma you may never have considered before.  The thing I love about this technique is that you can do this with your partner without worrying about ending up arguing.  Only negative things can be said when wearing the black hat…!!!  Use that to help you get things out on the table.  You can download a blank template here: http://www.slideshare.net/zhigangfang/six-thinking-hats-worksheet But I would highly recommend doing the YELLOW HAT BEFORE THE BLACK HAT!!! Sometimes you can do the BLACK HAT before the YELLOW HAT, but it really is up to you 🙂

It is simple once you have done it once, and after you remember the 6 hats, you can apply this as a mental model to any decision you want to make.

MAKE A DECISION!!!

This isn’t really a formal technique per se, but it is something I came across a while ago when I was making a decision about whether or not to take methotrexate to terminate my suspected ectopic pregnancy.

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I used this notepad to help me make a decision whether or not to take methotrexate

I bought a pad of paper that had blank lines to fill in anytime you want to make a decision.

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It nicely mixes up the two techniques I have already explained, and it is quite funny.  You can buy these ‘Knock Knock’ notepads from amazon here.

OK this post is long enough already….I’ll write about some more decision making techniques another day 🙂

3 months post Methotrexate

Today marks the day that 3 months ago I took the methotrexate shot to terminate my suspected ectopic pregnancy.  Today is an important day for Chris and I because we are officially allowed to try to conceive again!  Woohoo!!!  We were on a ban from conceiving just in case I got pregnant and the methotrexate was still in my system causing damage to the embryo.

Three months has flown by…I have kept myself busy with work travels and finishing off various projects at work before the end of the year.  Also preparing for Christmas has been a nice distraction too.  Now all that is left to do is make some time for a few parties to see in the new year.

You cannot believe how much I am looking forward to 2016 and our next round of IVF treatment 🙂 yup….this craazy lady here is looking forward to being stabbed in the tummy with needles.

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What-ifs? And Bias in Diagnosing Ectopic Pregnancy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Abortion and the grey space

We hear this word used in everyday life – abortion. We can all formulate an idea of what abortion is….someone choosing to end the life of their baby. But this isn’t a wholly accurate or fair description and is certainly not what medical professionals use the word ‘abortion’ for.

According to Wikipedia, the term ‘abortion’ can be defined as:

“The ending of a pregnancy by removing a fetus or embryo from the womb before it can survive on its own.”

The unintentional expulsion of an embryo or fetus before the 24th week of gestation is called a ‘spontaneous abortion’. This is the clinical term that is used by medical practitioners in their notes to describe what most lay people would understand to be ‘miscarriage’.

The intentional expulsion of an embryo or fetus is called an induced abortion. Reasons for intentionally inducing abortion are either therapeutic or elective:

  • Therapeutic abortion is performed to save the life of the pregnant woman; prevent harm to the woman’s physical or mental health; where indications are that the child will have a significantly increased chance of premature morbidity or mortality or otherwise disabled.
  • Elective abortion is voluntary when it is performed at the request of the woman for non-medical reasons.

And then there are the methods of abortion, including medical abortion and surgical abortion:  Medical abortion (sometimes also called chemical abortion) is induced by drugs or pharmaceuticals.  Where as surgical abortion includes procedures such as vacuum aspiration, Dilation and Curettage (D&C), Dilation & Evacuation (D&E) and hysterotomy.

The use of methotrexate to terminate my pregnancy of unknown location or ‘ectopic’ pregnancy is described as a medical abortion and can also be described as therapeutic abortion. Clinically, I did not miscarry.  Although I am sure I had started the process of miscarrying before I took the methotrexate, and would consider it to be a spontaneous abortion – or – miscarriage – or – early pregnancy loss. However you want to ice it, in my medical notes it will be described using the word abortion.

For those who are not aware that this is actually a clinical term it can come as quite a shock to see those words on their medical records.  For example, here is a link to a news article: “Mom to be shocked when miscarriage called ‘abortion’ in medical records” that shows how easy it is mis-perceive the term abortion.

But definitions of abortion vary across and within countries as well as among different institutions. Language used to refer to abortion often also reflects societal and political opinions and not only scientific knowledge. Popular use of the word abortion implies a deliberate pregnancy termination, whereas a miscarriage is used to refer to spontaneous fetal loss when the fetus is not viable (i.e. not yet unable to survive independently outside the womb).

Paul Freeling and Linda Gask* explain the problem well:

“As children many of us learnt the old rhyme “Sticks and stones may break my bones but words can never hurt me”. As we grew older we discovered that the adage was untrue. For most of us whose profession involved interacting with other people it became obvious that clumsy or inapposite use of language could cause pain. An attempt to avoid such pain has provoked…to suggest that distress in women who have miscarried would be reduced if changes were made in the language used by professional carers…the word “abortion” should be avoided because the lay public interprets it as applying to a termination of pregnancy.”

And then there is the grey space in between all of this. This is where in the US definitions and clinical descriptions are all important for insurance companies.

I recently read about a lady who fell right in between this grey space….

At a 13 week scan several doctors told her that her baby had a heartbeat, but the organs were not inside its body, the hands and feet are curled, one limb was missing, the neck was not right. Overall, the baby was unlikely to survive and should be removed as soon as possible before it could cause serious health issues. By definition, in Ohio, this situation was considered by the insurance company as an optional abortion because there was still a heartbeat, therefore, they would not cover the cost of the $10000 operation at the hospital. Planned Parenthood would be able to perform the surgery at a cost of $800.

Eventually, after the doctors re-worded the case, the insurance company agreed to cover the costs. But it came at a cost. You should read the whole article to fully appreciate what this poor woman went through: http://www.huffingtonpost.com/tamara-mann/heartbeat-involuntary-miscarriage-and-voluntary-abortion-in-ohio_b_2050888.html

This blog post is not about pro-life or pro-choice. It is merely a brief peek into the complexities of the use and definition of the term ‘abortion’.

For me personally, the insurance company did not initially cover the cost of my methotrexate treatment because it was being used as an abortion drug. Eventually we managed to claim the cost back directly via our European insurance provider.

I don’t have a solution to propose, I just know that abortion – whether it is spontaneous, elective, optional, surgical, medical – is a confusing grey mess of an area in the US.

* Freeling, P. & Gask, L., Changing terminology is no substitute for good consultations skills BMJ 1998; 317 doi: http://dx.doi.org/10.1136/bmj.317.7165.1028 (Published 17 October 1998)

NaBloPoMo November 2015

IVF round 2 – December/January 2016

We met for our follow-up appointment with our doctor yesterday.  There were no surprises.  Which is a good thing!  So the plan of attack is a fresh round of IVF…get a couple more embryos frozen:

  1. Schedule a Hysterosalpingogram (HSG – if you would like a refresher what this procedure entails, check out my post from last time here) – I will do this as soon as I start my period (who knows when that will be!!!).  It is very unlikely that my fallopian tubes will be blocked, but she wants to be sure.  Fair enough.  However, I am NOT looking forward to this test.  Last time I was completely naive to the potential pain ahead for this particular procedure, now that I know exactly how much it can hurt I’m a wee bit nervous!
  2. Plan to start Birth Control Pills to regulate my cycle in December with an egg retrieval date for early January 16.  There is a period of 3 weeks that the embryology lab is closed over the Christmas period.  Seriously – how unlucky am I?? Last time my cycle was delayed because the embryology lab was being refurbished.  Oh well – I guess everyone needs a holiday.

There is a potential chance we could start Birth Control Pills in November, and do a retrieval before Christmas, but I think it will be close to my 3 month period of ‘no baby making’ because of the methotrexate shot I had affecting fetus development.  I have been researching this, and I would be willing to go ahead a week or two earlier because doctors are overly cautious with this 3 month time stamp.  As long as I keep taking my folic acid I should have no problems.  However, this is something to be discussed once we have a better idea of a) when my period is likely to be and b) assuming my HSG test is all clear!!!

There will be no change to my protocol, perhaps a slight increase in some of the medication dosages to mature more of my eggs.  As a reminder from our first round we had 9 eggs retrieved, 6 of these eggs were mature, 4 of these eggs were successfully fertilised by ICSI, 2 good 8 cell embryos were transferred on day 3, and 1 of the 2 embryos made it to Day 5 blastocyst and was frozen.  Our doctor mentioned that she would consider waiting to Day 5 for the transfer this time around, especially as our frozen one is Day 5 – she wants them to be the same.  We like this plan!

This gives me some time to concentrate on work for a little while, get my body healthy and start growing some strong eggs!  What is amazing is what the horrrorscopes says for me next week…

horoscopes

I was already planning on going back on my sugar free, healthy diet next week! Freaky! Sooooo….which old friend should I Skype on Sunday next week and wants to reveal a long-held secret to me??!!!?!

6 weeks post methotrexate treatment

It’s been 6 weeks since I was treated with methotrexate to terminate my ‘ectopic’ pregnancy.  The first few weeks involved dealing with miscarriage bleeding and pain.  Pains that made me worry about ending up with a burst fallopian tube.  Pains that I had never experienced before.  Then there was the emotional pain that accompanied it;  sadness and grief over the failure of what could have been.  Finally, at what would have been my 13th week of pregnancy my hCG levels are below 5 and I am officially out of any danger.

Progression of my hCG levels over time

Progression of my hCG levels over time

But although I am grateful I have had zero complications (i.e. no tube ruptures or not needing a D&C) it hasn’t been the easiest of rides.

4 weeks ago I fell ill with what seemed to be the usual cold/cough that one catches in September time.    Methotrexate can lower the number of white blood cells, which increases the chance of getting an infection and being able to fight it off effectively.  I haven’t been able to shake off this cough completely and it got worse over the last four days of my work travels to Germany.  I think my cough has gotten worse because my stress levels increased due to the nervousness of the upcoming conference, and my poor sleep due to flying/time zone changes.  Basically, I haven’t been good to my body.  I had to avoid my multi-vitamins until my hCG levels were below 5 because the Folic acid in them can interfere with the effectiveness of methotrexate.  So I have been dosing up on Vit C, but I have been missing out on all the other immune boosting vitamins and minerals.

The morning of the beginning of the conference and the day I was presenting was when I felt my worst.  I had to run out of the conference during the key note speech because I was about to puke up my guts from all the coughing.  I wasn’t sure I was going to be able to close the day with my presentation….which I was already stressing about because it was in front of my about 100 of my peers and various other important people I need to make an impression with. Fortunately, I managed to survive  and my presentation went down well – I had lots of excellent feedback.  But the stress of it all was just making my cough worse.

On the evening before my flight back to the US I took some nytol/night nurse at 8pm and was immediately fast asleep.  I woke up at 1005 AM and realised I had slept through my alarm.  I was supposed to already be at the airport by now, my flight was leaving at 1215 PM!  I had been in a deep sleep for 14 hours! Aghhhh!!!! Panic!!!! It is not like me to sleep for long, I am not the kind of person who likes to lie in.  So there I was hacking my guts up and had a temperature running.  But I needed to get home!  So I threw everything into my suitcase – higgledy piggledy- checked out of the hotel and ran to the train station.  1 hr after waking up and freaking out I was standing at the airport check-in desk with 10 minutes to close!  I made it, but I was lucky to catch the train that I did, 3 minutes later I would still be in Germany right now!

I felt awful for the poor German teenage girl sat next to me on the flight (it was a completely full flight) because I was coughing every other minute the entire way.  Cough medicine, flu medicine, cough sweets, water – everything I tried, just could not stop me.  I felt like I had done 1000 sit ups!  My abdomen was aching and my throat shredded.

So here I am, finally tucked up in bed, at home, with magazines (thank you Chris :-)) and hot tea, relaxing.  I may be my worst enemy when it comes to being ill, but I will say that I totally blame the methotrexate.  My white blood cell count was already below the normal level before I took the shot – so I can imagine it was severely lowered afterwards.  I could have wrapped myself up in a cotton wool ball – but I would have been bored as hell and probably missed out on our epic holiday.  So, yes, I kind of did this to myself…but today I am FINALLY chilling out.

(Who wants to bet I have caught something else from the last few days to add on top of my cough?)

I am excited about next week though because the only meeting I have in my diary is our doctors follow up appointment.  Being out of office for three weeks does have its advantages!  Fingers crossed I wake up tomorrow feeling better and I can start everything -work, life, infertility – all afresh 🙂

A small reminder that I have absolutely no control over this

It has been 6 days since I have thought deeply about our recent loss, but today I have thought about it a lot.  The past six days have been truly wonderful (we are currently on a 15 day road trip in the South West of USA); Chris and I have hardly talked about what the future holds for us as prospective parents trying to conceive.  No baby talk.  No IVF talk.  Who knew we had so much other stuff to talk about!

All was well and good in the mind of Dani, until I received a phone call when I was at the top of the North Rim of the Grand Canyon, from my clinic, reminding me that I am supposed to be taking weekly beta blood tests until my hCG levels are below 5.  I was a little peeved about this call.  I was annoyed because the day after my last blood test (Monday 27th Sep about 12 days ago) no one called with my  test results, I waited until the day after, still no call.  I had every good intention to call them to check what my results were, but my week got so busy at work that I never made the call, and they never called me.  So, on Friday 2nd Oct, I flew out West, in holiday mode, thinking that I must be in the clear, otherwise the clinic would be harassing me on the phone by that point – and so I thought nothing more of it.  Until that moment in the Grand Canyon.  Now in their defence, they could have called me at any point on my holiday and I wouldn’t have received a message from them due to lack of connectivity to the ‘real world’.  Never-the-less I was still slightly annoyed.  I told the nurse that it would be a bit tricky for me to come in the next day for a beta blood test because I was currently in Arizona and wasn’t planning to be back until next week.  So I asked her if my beta level had dropped sufficiently that it wasn’t urgent for me to take a test.  She told me levels were at 49 (finally, I found out my result, until that point I had no clue).  She said she would message the doctor who was overseeing my methotrexate treatment, to let him know I was away.  She thought it wouldn’t be a problem.  I have heard nothing more from the clinic – so I assume all is good with the world, they are not seriously worried….but again….my access to signal is poor to terrible, so who knows?!

Receiving this call briefly reminded me where I was just over a week ago and I felt a bit sad again.  But that was a brief moment….and the holiday fun continued.

That was, until yesterday.

I woke up yesterday with period pains.  I thought uh oh, I’m not really prepared for my period to happen just yet!  BUT my period showed itself within an hour of me thinking, hmmm my period feels like it is coming.  That in itself is unusual, I normally get a few days advance warning of pains and twinges.  I have previously read online that a period following a miscarriage can be painful and heavier than normal (I don’t really know what normal is supposed to be anyway!!!).

Initially, I was excited because this meant that I would have one normal cycle, then the next cycle have the dreaded HSG test (again :-S), then the third cycle start the Birth Control Pills for next IVF cycle, all before Christmas! Then when I actually thought about it and counted the number of days since I stopped spotting from the miscarriage – it was 16 days since the heavier spotting, and only 13 days since zero blood.  So the question I had on my mind was – is this actually my period? – or am I still miscarrying?  Everywhere I have read, they say 20 days from end of spotting or hCG below 5, minimum.

And then…..last night I woke up from sharp pains, although they dissipated quickly, just a few hours later, I passed a clot the size of half my hand, I have never experienced this with any period before.  But like I said, I have no clue what is normal.  And because I have missed my beta test this week, I don’t really know if my hCG levels are back down to 0, so I cannot say for sure this is my period.  All day today has been very heavy and very clotty, I felt like I was miscarrying all over again.

I feel sad, all over again.  The hormones probably have a part to play, but the sadness has washed over me.  Just as I was on my way up.

I’m simply tired of being sad for us.

I have missed blogging over the last week, I have missed reading all the other lovely blogs, I need to hear the good news stories, I need to hear inspiration; I feel like I’ve missed out on some therapy of the mind and soul.  Despite my respite from the rest of the world and the wonderful distractions from Mother Nature.  But I am writing this today as we drive to Santa Fe – I just couldn’t wait.  Chris is probably cursing me right now as we head into Santa Fe getting lost because, as the chief navigator, I am distracted with writing my thoughts.

Please, please let this be an exceptionally heavy period and not a continuation of the miscarriage.

Infertility is teaching me that I have absolutely no control over any of this – my body, my mind. And so although I tell myself it is pointless trying to wish things to be right, I just can’t sweep the sadness aside for today.  Hopefully tomorrow will be another day, another day on the path to slow healing.

The healing power of Stockholm and my Nobel Prize

As I return from my work travels in Stockholm, I have some down time to reflect upon our recent failed first round of IVF.  I say ‘failed’…it’s actually quite difficult to say with any confidence that it was actually the IVF that failed us.  It is possible I suffered an ectopic pregnancy, but the doctors were unable to confirm it, although they treated me for it with methotrexate to terminate the pregnancy to be on the safe side.  Something was growing, they just could see it.  If my pregnancy was truly ectopic, then it wasn’t the IVF that caused the demise of my pregnancy….the IVF treatment managed to get me pregnant, but my body decided it wasn’t going to succeed; my body simply decided that this wasn’t my time to join the pudding club.

Or it could all simply be described as just terrible bad luck.  Sometimes, there is just no reason known to man why Mother Nature can be so cruel.

Of course, it is natural to blame oneself.  There are several potential causal links to an increased risk of ectopic pregnancy: tubal damage, smoking, age, IVF – all of these increase the risk: approximately 1-2% of pregnancies are ectopic.  But mostly there is just the plain and simple element of unfortunate luck.  You can find on the web doctors who speculate that the risks are higher with IVF because either:

  • a) With a 3-day transfer, the embryo that would ordinarily be in Fallopian tube at this stage, seeks out the more fluffy warm tubes because that is where it thinks it should be, then gets completely lost and doesn’t ask for directions.
  • Or b) the doctor who performs the embryo transfer procedure places the embryos too high up in the uterus; or they are transferred too quickly and end up in the wrong place.

However, my doctor explained to me that statistically speaking, the risk of ectopic pregnancy doubles with IVF because generally there are two embryos being transferred and so that risk doubles from 1% to 2%.    This makes a whole lot of sense to me.  I was just unlucky.

I am thinking through all of this right now because I need to take away something positive from this failed cycle.  I’ve got to get my cup half full again….and so the positive could be that we just needed that extra help from ICSI or the hormones, and I was just one of the really unlucky ones to not stay pregnant this time.  Next time might just be our time.  There is still no reason why it shouldn’t be.

I was feeling a little sorry for myself in my last post.  But the last couple of days have been an improvement, and it is starting to look like our path is finally beginning to flatten out, allowing us to take a breather.

Time to catch a breather before heading off on to the foggy path called infertility.

Time to catch a breather before heading off on to the foggy path called infertility.

I have been kept mentally busy with work, socialising and networking with my colleagues, so I have had little time to think emotionally about the failed round of treatment.  Physically, the pain has dissipated, the bleeding continues (seriously, where does it all come from?!!?), but it is a very small amount that it has barely bothered me.  I still feel exhausted, but jet lag most likely lays claim to the cause of that.  I miss my pre-natal multi-vitamins, I really hope to be allowed to take them again soon.  They help keep my bowels in shape and my energy up.

And I will grow back my positivity because over the next 3 months as we have a plan to get us to our next IVF cycle (hopefully if I get the all clear from my repeat HSG!!).  In short – we have our 2 week, 2000 miles, road trip starting from Las Vegas, visiting various amazing places like Grand Canyon, Zion national park, Bryce Canyon, Monument Valley, Santa Fe, Albuquerque, Petrified Forest, Painted Desert, Hoover Dam and a whole lot more.  I have another 3 work trips to Europe to fit in – Munich, Berlin and Brussels/Mons (I haven’t been to Berlin yet so that is exciting!).  We have a consult with our doctor scheduled for late October to discuss the plan for the next cycle.  I need to find some time to fit in a HSG once my period returns (seriously NOT looking forward to that).  I am hoping my body is going to play nice and we can get an IVF cycle in just before Christmas.  It’s also Chris’s Birthday soon and I want to organise a small party for him.  And amongst all that we are going to try and fit in a weekend away to Shenandoah National Park to see the beautiful colours of autumn.  No time for stopping over the next 3 months!!

Stockholm has done me a lot of good (despite the jet lag), I’m feeling mentally refreshed and excited to be moving forward.  However, I was very disappointed to discover that my invitation to pick up my Nobel Prize must have got lost in the post.

No Nobel Prize for me.....But it was beautiful!

No Nobel Prize for me…..But it was beautiful!

But I did get a chance to scope out the building they award them in, the museum my name would be listed in, and the best restaurants to celebrate at….May be someday I’ll be back 😉 bahahahahaha – Keep dreaming Dani!

The Nobel Museum, Stockholm

The Nobel Museum, Stockholm – Something to reach high for 🙂

Is the pain in my mind?

I have had a very specific pain around my right ovary for the past four days. The pain worsened in the evenings, I slept it off after getting to sleep with the aid of the pain killers and my sheer exhaustion.  It felt like something was pushing inside, wanting to pass.  The acetaminophen & codeine-3 was barely hitting this very specific pain.

Late last night I considering going to the Emergency Room.  I knew that my doctor had said I shouldn’t travel to Europe if I was having pain.  Well I was in pain, the drugs weren’t stopping it, but I wasn’t doubled over with the pain, I was getting waves of pain, increasing intensity and then becoming dull but it was in this one particular spot.  I couldn’t ‘touch’ the pain, when I pushed down it didn’t hurt more or less.  Was I being stubborn or just simply stupid for ignoring this?  I read stories of women whose fallopian tubes had ruptured weeks after taking the methotrexate.  Surely this was a very rare event, it can’t be happening to me?  I cried a lot in my indecisiveness.  Chris even cried with me because he didn’t know how to help me – it was my decision to make whether or not to go to A&E – he felt helpless.  I didn’t want to go to hospital to spend a fortune for me to be sent home again – or worse – they wouldn’t be able see anything again on the ultrasound and end up opening me up. Chris asked me a very good question – was the pain in my mind?  Was I making it out to be worse than it was because I didn’t want to travel to Europe?  It was a harrowing question to think about.  It was definitely a possibility.  The mind can play cruel tricks.  But I eventually decided that in the morning if I still had that specific pain we would call my clinic or go to ER.  That was my line.

I woke up this morning PAIN FREE!!!! It was an amazing relief.  I was exhausted and felt like I had been out on the town all night, waking up with a hangover.  Oh how I wish that were the case!  But I felt free.  That was for about 3 hours….then the heavy bleeding and passing of clots continued along with all that type of associated pain.  But this pain I could deal with compared to the specific pain I was having the past four days.  Such a relief.

So here I am waiting for my flight to Europe.  After connecting flight #1 I have discovered that flying whilst still miscarrying is not the greatest idea I’ve ever had.  I could feel I was about to pass something, then of course there was turbulence and the seat belt sign came on.  The flight attendant barked at a little old lady to sit back down!  So I sat there in my seat hoping I would not leak everywhere (sorry – I know this is probably way too much information!!!).  20 minutes later I couldn’t sit still anymore, so I got up despite the turbulence and dashed to the toilet.  I sat on the toilet thinking how ridiculous this whole situation was and sobbed.  I am so glad I didn’t wear mascara today, in fact, mascara has not been part of my make-up regime for several weeks now.  I thought about all the things I would shout at the flight attendant if she gave me grief about getting up from my seat! Fortunately she was too busy to bark at me.

I just have a 9hr flight to London, followed by 2hr flight to Stockholm to survive this mess!  Wish me luck!!!