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

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The great dismal swamp – not quite so dismal

For the last nine days I’ve had a break from blogging and we are on a break from trying to conceive.  I needed both a bit of mental break and a physical break, trying to catch a breather in preparation for our ‘Next Steps’ appointment with our RE tomorrow.  But taking a break hasn’t been plain sailing.  I have had a couple of ‘break downs’ in the last few days, mostly ending with me snapping at Chris and/or crying as a a snivelling mess.  Why? Because I hate this limbo ‘not knowing’ business.

Unexplained infertility is a sucky non explanation for why we haven’t been able to conceive so far, even with a little help.  There are so many questions I have that may never be answered…and it is difficult to get out of this hole of asking “why?” and “what if?”.  Chris has been amazing, he is strong and can handle my random outbursts of crying, reminding me not to bottle all up.  But I can see it in him too, he has the same questions as me.  I know at tomorrow’s appointment we will not have many of these questions answered immediately, but it will help make the path a little clearer in the next steps.  It’s the baby steps I need to help keep me sane, a break has so far been physically good for my body but mentally it has been hard.

So where better to get one’s self out of a dark hole?  The great dismal swamp…this place can take your breath away, and can be anything but dismal.  The swamp is huge, over 112 000 acres and in the heart of this wildlife refuge is an amazing lake, lake Drummond, that is an impressive 3000 acres.  Apparently it is one of two only natural lakes in Virginia.

Lake Drummond at the great dismal swamp

Lake Drummond at the great dismal swamp

The swamp also has a lot of history steeped in it, particularly as this is where many fugitive slaves lived, under the cover the swamp land.  I’ll tell you something, the mosquitoes are horrific in the summer.  This wildlife refuge is always so quiet, and it is easy to quickly feel like you are in complete wilderness, it is anything but dismal.

This time of year is renowned for rare warbler birds and many stunning butterflies.  So today we took our bikes and got on the trails.  In addition to the many sightings of deer we were pleasantly surprised to see thousands of hairy caterpillars, munching so loudly it sounded like it was raining in the swamp.

Hundreds of hairy caterpillars and wishes too!

Hundreds of hairy caterpillars and wishes too!

I feel refreshed this evening after our mini trip to the swamp.  No more tears, I’ve promised Chris this, for at least a few more days anyway 😉 I cannot tell you how much I am looking forward to our appointment tomorrow…..

The wish

Chris got some cracking photos today: The wish

Third time’s a……

Three Times a Charm

I think I am getting the hang of this IUI thing now.  I understand exactly what is going to happen each day, what drugs to take, what side effect will happen and when, who to speak to on the phone, who NOT to speak to on phone, how to ask for what I want, how to make myself understood, how to refill my various prescriptions, what bills to expect, even what emotions I am probably going to feel on this roller coaster of a cycle.  For example, I am on Cycle Day 4, and having taken two 2.5mg of Letrozole last night at 7pm, I knew at approximately 4pm Today I was going to be mega sleepy.  And I was! Where I work, if you have done something more than twice you are considered an expert, so I’m going to declare myself “IUI Subject Matter Expert” on my “CV of life”.  I’m feeling quite chilled out about it all, that is except for one, teeny, tiny, annoying thing.

INSURANCE.

The thorn in my side right now.  Needles have nothing compared to this pain in the….

You may recall before we started IUI that my insurance company wrongly stated that I did not need pre-approval for IUI treatment.  It was only after I started my first cycle all became apparent that we needed pre-approval before any fertility treatment.  Since then, we have been trying to get things straight with our insurance company.  I am not entirely blaming the insurance company here.  I am blaming ‘the system’.

It seemed so simple, our insurance company required copies of our medical records to determine pre-approval for our IUI treatment.  Well that’s easy! No? Fertility clinic – please provide our insurance company with our medical records.  “No problem, we will get the nurse right on that” they said.  Well each week we chased them, they claimed no knowledge of this request, but wait, what is this? …oh there is a note in our records to do this.  Hmmmmmm.  At our last appointment 2.5 weeks ago, the nurse promised us the request to send the medical files was with their business team and they were going to action it that day.  Well it turned out that was all bull.  No medical records were ever sent because we had to fill out a release ‘form’.  And after the number of people we spoke to try to make this happen, not one person mentioned a form.  Things also got complicated when the fertility clinic realised that our insurance’s medical office is located in Belgium.  This would be impossible! Sending medical records abroad – there are different laws for this. They were not quite sure how they are going to do it,  come on, surely there is a form for that too!  How about I google it, I bet google knows the answer.

So after we hit this road block, Chris tried a different approach.  He has given the half completed ‘pre-approval’ forms to our insurance company to chase up with our fertility clinic.  When my insurance company emailed me this morning to say could I please provide them with a contact number for my doctor, oh, by the way we would need approval for each round of IVF….I flipped!  As you can imagine we had dutifully and carefully provided a contact number and address, but most importantly, it clearly stated on the form the treatment was IUI.  I even provided them with a breakdown of all the costs for each procedure and medication.  Aghhhhhhhhh!

I have no idea what is going on right now, but it is all now in the hands of the insurance company and our fertility clinic to figure our laws, methods of handling medical records, procedures, money and what not.  Why couldn’t we have got to this stage two months ago?  At this rate we will probably get our “pre-approval” for IUI after we have finished all three rounds of IUI!

Without pre-approval we have paid for our first round of IUI out of our pockets and hoping we will be able to claim some money back.  Soon the bills will be coming in for the second round of treatment.  It would be nice if they figured it out before then.  My worst nightmare is that they deny the claim because there was a small test we had to do or form we had to complete before we started with the IUI.  There is little advice the insurance company can provide us on whether we are covered or not until they have our medical records.  Similarly, they can’t answer if we are covered for IVF until they see our medical records.  This makes financial planning for the future a little challenging.  But we are planning for the worst, just to be safe.

I should point out that we do have a rather strange insurance arrangement – because my organisation is international, Allianz, our insurance company, provides coverage for all staff across the various countries.  Allianz uses United Healthcare as their service provider in the US to purely deal with admin for claims made in the USA and negotiate in network deals with providers.  This makes things complicated for medical providers here in the US when we try to explain that they have to provide medical records to Allianz, not United Healthcare.  I hope I didn’t lose you there!

Third time...

Third time…

So to sum up today’s post – Insurance sucks and starting IUI cycle 3 is going to be a breeze.  As the saying goes….third time lucky!  Or….third time a charm!  Let’s hope it’s not like the other google search term on the list above – third time out :-s

Infertility Tests – wands, needles & fishy dye

I scheduled my initial round of infertility tests as soon as I could, but due to work commitments and travel back to the UK for Christmas the tests ran over two more cycles.  Over December 14 and January 15 I had a vaginal ultrasound, cycle day 3 blood work and HSG.  Chris booked his sperm analysis in January.

Vaginal Ultrasound. An ultrasound wand was placed in my vagina to check if I had follicles in my ovaries.  And I had many!  The ultrasound also showed that I was just about to ovulate from my left ovary (which is the ovulation pain I had been feeling earlier that day – it’s nice to know that I can tell which ovary I am ovulating from!!).  The doctor confirmed everything looked healthy and normal. Woohoooo!

Cycle Day 3 blood work.  I was horrified at the amount of boxes that had been ticked on the blood paper work….I calculated at least 4 vials of blood.  I am not good with needles.  I cannot bear to look at them without feeling faint.  Just before I deployed to Iraq I had to ensure all my vaccinations were up to date (all four million of them).  The army nurse asked me how I wasDani thought with needles.  I replied ‘not particularly good’.  He said ‘well now is the time to overcome your fear, I’ll tell you when you can look away’, and then immediately proceeded to jab me four times, after he just laughed, ‘see?  I told you would overcome your fear!’.  I walked away dizzy and attempted to find the toilet to be sick.  I also have donated blood once, and passed out after giving 1/2 a pint.  Apparently even when I voluntarily want to give my blood away my body won’t let me!  This time, for these particular blood tests, the nurse was lovely (despite him coming to the conclusion that I ultimately kill people for a living), he put me at ease straight away.

A big difference between the UK and the US, is that here in the US it is possible to get your blood test results online before your doctor sees them and discusses what they actually mean.  I am not a doctor and I can barely pronounce the name of the tests, so using the internet to help me decipher the results was a TERRIBLE idea!  In the UK you call up your doctor and then a receptionist will tell you if the results were normal or you need to book an appointment.  I am not sure which way round I prefer!!  Anyway, my results were normal.

Hysterosalpingogram also known as a HSG.  I’m not sure any human being would want to have this test performed out of choice. This procedure is where dye is injected through the vagina into the uterus and by using x-rays to see if the fallopian tubes are blocked. I was given an information sheet about the procedure, I felt prepared, and took the 800mg of Ibuprofen as prescribed an hour before.  My friend accompanied me as it recommended that you have someone drive you home afterwards. I am very pleased she was there with me, I couldn’t have gone it alone.

I was a bit nervous, naturally, but it wasn’t until the nurse asked me ‘Are you familiar with the procedure?’, I said, ‘yes, I read up’.  The nurse looked a little worried ‘uhoh you haven’t been reading the internet have you?’.  Now that part made me nervous!  I had not thought to look up the procedure online because the info sheet given to me was sufficiently detailed.

The procedure was very uncomfortable, and painful at parts, it felt like my insides were on fire and I had immediate cramping.  I could just about see the screen with the x-rays on it and could make out that my tubes were flowing freely.  Great news!!!! But the doctor asked me ‘did you know you have a retroverted uterus‘? Nope, no I did not know that.  Well everyday is a school day after all.   The only question I had on my mind at that point, was  what does all of these results really mean?  What will Chris’s results be?  I felt sad and guilty that Chris would be feeling more pressure about his sperm analysis.

Google – Jekyll & Hyde?  After my final test, I went home intrigued, and googled “HSG”.  I am so glad I did not read any forums before going for this procedure, there are some sad and terrifying stories out there.  The nurse was right to look so worried.  A lesson was certainly learned here – I’m going to  keep trusting in the people I am paying lots of money for to look after me.  Maybe I’m being naive, but google isn’t always your friend.

Diagnosis – Taking The First Steps

When do we seek help?

The typical time to see a doctor when you are concerned about infertility is after a year of TTC (Trying To Conceive) if you are under the age of 36.  Both Chris and I are 32, we had discussed when we would seek advice, which was of course as per the guidelines suggests.  But ten months in, Chris had a new doctor’s routine physical where he explained our dream of becoming parents.  The doctor recommended a routine blood work up; this is when we found out that Chris’s testosterone levels were very low.  And so as our doctor provided a suggested specialist fertility clinic.

In the UK, things may have gone a little differently.  We probably would have had to wait a year and at least one minute to be able to get any tests unless we had symptoms.

Research….research….research

So after a serious amount of research, including finance checking, we made an appointment with the Jones Institute for Reproductive Medicine – this organisation was the pioneers of IVF.  We took the first appointment we could get, and so after 11 months of TTC we were taking the first steps towards a diagnosis.  This was pretty scary.  I was in denial, I really did not want to go to the appointment.  Chris was eager, with his testosterone levels being so low, I understood why it was important for him.  Within the last eleven months we had experienced twelve of the dreaded two week waits.   (Those two week waits deserve a whole blog on their own, so I won’t talk about them right now.)  I can have a very short cycle of 22 days so we were able to pack a few extra chances in 🙂

A bad history with doctors

Why was I so nervous?  Well my history with the doctors in the UK is not a great one.  I spent several years in my early twenties making numerous trips to the doctors to diagnose the cause of my sharp, random, abdominal pains, painfully heavy periods and diarrhea.  After many tests ruling out anything serious, my doctor concluded that my pain was either IBS (Irritable Bowel Syndrome) or Endometriosis.  To diagnose Endometriosis I would require a laparoscopy – the last resort – and not a favoured diagnosis method for someone so young.  Therefore, she recommended I first try an exclusion diet to rule out foods that might cause the pain.  After four weeks of experimenting with my diet I discovered a notable correlation between my pain and eating potatoes, wheat and acidic type fruits such as pineapple.  The pain also got worse with stress a notable IBS symptom.  There is no test you can take to diagnose whether you have IBS or not.  But it fitted my symptoms and so I tried many treatments.  My IBS was very bad at university – I had spent two days out the field training with the Army, eating the Army freeze dried ration packs (packed with potatoes and wheat!!!), this plus a particularly stressful moment tipped me over the edge, the pain was so excruciating I passed out and woke up in hospital.  When I told the hospital I had IBS, they discharged me immediately with no further questions.  And since then I have managed my IBS through diet (and recognise that stress is likely to be a bad day for me!!).

So why do I not like the doctors?  My experience with doctors in the UK has always been one of a feeling that I am wasting their time.  I have yet had the opportunity to experience them here in the US as I have in the UK.  So far so good…..the major difference is that I am paying a lot of money for the doctor here in the US and I have a choice, but in the UK it was ‘free’, and beggars can’t be choosers (although much has changed in the NHS over the recent years, there is more choice available now)!

Our first appointment with the Fertility Clinic

wish

I can tell you that I felt sick to the stomach about going to our first appointment together, I must have gone to the toilet at least three times in the hour before.  I knew it was a ridiculous feeling to be having, but this time I had Chris to hold my hand with me, and after discussing the first steps with our new doctor, it wasn’t all so bad.  In fact, I left with a feeling of huge relief.