The pudding club

It’s been almost a week since I was on here…that’s not like me.  I have been hiding from the world a little bit.  It’s been a really hard week to get through.  My first scan looming over my head.  Would there be a baby?  Would there be a heartbeat?  I’ve had lots of lovely messages wishing me luck – but all I wanted to do was curl up and sleep, avoid polite conversation, time to fly.

Thursday morning I felt numb to the world.  Fortunately I was busy at work so the afternoon appointment came around quickly.  Chris met me at the clinic, he was already there in the waiting room, patiently waiting for me. I felt sick to my stomach.  This was it!  We didn’t have to wait long before we were called back.  The nurse took my vitals (weight and blood pressure), then we went into the ultrasound room together.  I sat up on the bed and before I had to time to wonder more about the possibilities my doctor walked in.  I don’t really remember what she said to me, but like I had been all week I’d had enough with the small talk.

As soon as the ultrasound wand was in me we could see my extremely hyper stimulated ovaries….I had many huge follicles still – like two times the size of the ones I am used to seeing during stimulation phase.  My doctor exclaimed my ‘hyper’ situation, and I said, yes, I have been feeling them 😦 And then she found a sac, zoomed in and there was a little blob on the screen!  I was holding my breath as she found the heart beat – and there it was 144 beats per minute (BPM).  I just cried.  She measured the size of it and it was measuring 2 days behind at 7 weeks 2 days, I was technically 7 weeks 4 days, but she said that was close enough!

As I sobbed, Chris asked what happens next and my Doctor said we now graduate to my OBGYN!  Oh…I don’t have one since we moved to the US and went straight from our family doctor to the fertility clinic.  Then Chris said we need to find one near our new house…to which I corrected him and he said – “no, we got the house today!”  I couldn’t believe it, he was telling me right there that we got the house we wanted and he had the call from our realtor an hour or so before the appointment.  Cue even more tears from me and excited happy doctors & nurse in the room.  What a day for good big news.  I hugged my doctor and nurse and thanked them with tears running down my face!  It was surreal as I walked out into the waiting room with my face red from tears, I am sure people couldn’t tell if it was good or bad news I just received!!  And that was it…we left our clinic realising we wouldn’t be back too soon.

Finally I’m in the pudding club – for real! I’ve been in a bit of shock, but I am embracing the pregnancy now.  I believe it is happening.  This is our time.  We have even agreed to give the blob a nickname – Rocky – our little fighter.  It also looked a bit rock like on the scan 😉

I realised I needed to find an OBGYN quick that works with the hospital we wanted to give birth at, so I did my research and made my first pre-natal appointment in the ‘normal’ world.  My first appointment and next scan will be at 10w2d – a little later than they like, but it was the earliest they could fit me in.  I’ve also been allowed to switch to progesterone oral capsules (but taken transvaginally) – these little things cost over $380 for 1 month’s worth!  Completely different to the progesterone in oil which cost only about $90!!! But I am sure it will be worth it so I don’t have to inject myself whilst travelling again (I’m off to Turkey tomorrow – not looking forward to this trip at all).

This week has been such an emotional roller coaster – and yet on the face of it, it has been easy…we have no complications.  Just when we thought this was the end…

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The Enhanced 2 Week Wait

It’s kind of like I’ve received my invite to join the pudding club, I’ve completed my application, I’ve done my best to fill everything out correctly, I’ve been thanked for my application and told I will be welcomed, subject to approval!  But there is a pause….no one is communicating with me, my doubts are creeping in.  May be they found something in my application that they don’t like.  May be I won’t be joining the pudding club after all.  This period of waiting is what I am calling the “Enhanced Two Week Wait”.

During this period of time, it doesn’t take much to make me stop and think about what might be.  And when I think about what might be I briefly hold in the tears.  Sometimes it’s tears of sadness and other times it’s tears of relief and happiness. 

With the sadness I think what might happen if we look at the screen and there is no fetal pole or no heartbeat.  I won’t be able to hold those tears back.  The immense sadness will wash right through me.  I  won’t be able to not think about the injections, the pain from the OHSS, the tiredness, the surprising love for someone I have never met….all for nothing.  It will be for nothing with a cruel ending that results in a horrible painful bloody mess.  It will all have been for nothing. 

And then sometimes I’m on the brink of tears of relief and happiness.  With the happiness I think what might happen if we look at the screen and there it is…wobbling around in there – only just the size of a grape, unknowing as to how much it is loved and wanted to be held in our arms.  I will feel relief that it was all worth it; that I am proud of ourselves sticking to the path on this rocky journey. 

I will keep these little thoughts in the back of my mind that will continue to creep every single time I feel a pain in my uterus for the next week, reminding me something is going on down there.  Just 5 more days and one of these opposite realities will come to fruition.

I am just over half way into this ‘enhanced 2 week wait’, and there is absolutely nothing I can do but patiently wait.  It’s been a tough first week being away from Chris in a country where there is a 6 hour time zone difference…picking up the phone to talk has been challenging with the nature of our work, it doesn’t help.  I’m becoming a pro at giving myself these progesterone injections, I even gave myself an injection without icing the area first.  It turns out that it just stings a little bit afterwards so it wasn’t too bad pain wise.

I have had sporadic pregnancy symptoms, which doesn’t fill me with confidence, but I know that this is the case for many women who go onto have successful pregnancies.  I just can’t help but err to the side of negativity. 

Symptoms:

Peeing a lot.  I have been on this plane for just 4 hours and have been to the toilet 7 times already. Boobs.  They don’t like being touched or leaned on (i.e. lying on my front is painful!!) Sorry Chris, no boob touching just yet!! 😉

Nausea.  I have had only a couple of instances of being on the verge of puking, but these were easily resolved as soon as I got some food in me! 

Tiredness.  It has been a hard week with work and travelling to Europe I’ve had little opportunity to catch up on my sleep so I am constantly yawning.  I have even set my alarm a couple of times this week for 10-15 minute PKs (Power Kips). 

Period type pains.  These pains don’t last very long maybe a minute or two and come randomly in waves.

Actually listing out all these symptoms makes me realise that perhaps I am a bit more pregnant than I really thought I was!  In addition to this I am still suffering from OHSS albeit a lot less.  Twisting my torso around or bending down/reaching up still is painful.  😦

I hate to wish my time away in this life, but I really wish it was Thursday already!

IVF Diary Vol III: 03 – 06 Apr 16

Medication(s) administered and dosage(s). Stimming phase: day 6. PM: Gonal-F 375 iu & Menopur 75 iu injections. AM Lupron 0.5mg (5 units) injection

Medical procedures undertaken. Monitoring vaginal ultrasound and Estradiol blood tests check 2! I had a good number of follicles on Day 4 of Stimming…better than my previous 2 rounds, I had 6-7 in each ovary which was better than the 4-5 from the previous rounds.  So that’s good!

What are my symptoms?  The headaches have started 😦  I’m trying to stay hydrated, but I’m not able to shake them.  Also, when I thought I was suffering from a cold – turns out I was suffering from allergies to pollen – potentially the pine pollen.  For those of you unfamiliar with pine pollen, it is luminous yellow and coats everything in the neighbourhood in a fine layer of yellow dust.  Then when it rains it turns the puddles toxic yellow!!!

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Ughhh the pine pollen gets everywhere!!!

today is the first day I’ve been feeling my ovaries – Oh hello ovaries, it’s about time you woke up and reminded me how many follicles we are growing inside of you!!!

How do I feel today? I am feeling much better than my previous post.  I have been off work today.  I’ve caught up on some lovely blogs, I’ve chilled out with a friend and her kids (we also played with St Bernard mountain puppy in a pet shop) and I’ve put together some gratitude boxes for the upcoming yard sale to raise cash for our local infertility support group!  These boxes have some sweet treats and a positive happy quote written inside them.  They are a way to say thank you to those who donated to our group’s cause!  So I’m feeling inspired and positive today 🙂

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Any results?  Estradiol level after 3 days of stimming 380 pg/ml – this is a lot higher than my previous cycles – and correlates with my increase in follicle numbers too (cycle 1 – 173, cycle 2 – 194). Uterine lining is looking food.  Ovaries are stuffed with some nice looking follicles. So all looking good 🙂

What’s next? Tomorrow morning is monitoring appointment check 3!

Weight. I have put on 5lbs since IVF 2. NOT AMUSED.

Waist. AGHHHHHHHH MY TUMMY IS SOOOOOOO BLOATED!!!!!

Boobs. NSTR.

The Final Countdown!!! Over half way there!!!!

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*Notes.  I take First Response Reproductive Health multi vitamin gummies (pre-natal), 5mg Melatonin at bed time and CoQ10 200mg gummies daily.  NSTR = Nothing Significant To Report.

IVF Diary Vol II:21-22 Jan 16

Medication(s) administered and dosage(s). Stimming phase: days 7 & 8. PM: Gonal-F 300 iu & Menopur 150 iu.  AM: cetrotide.

Medical procedures undertaken. Monitoring appointment – ultrasound and blood test.

What are my symptoms?  Tiredness – I had to have a 1.5hr snooze in the afternoon because I just couldn’t keep my eyes open!  The headache was just awful yesterday, it was persistent, however, today it has not been so bad. My tummy generally hurts when I bend over.

How do I feel today?  Awesome because I gave myself the menopur injection.  MY FIRST SELF INJECTION!!! That’s right, I have managed to get this far without doing one single injection myself because I have been terrified to do it.  Today I overcame my fear.  Chris got excited because he thought this meant he was getting out of injection duty.  Oh no dear hubby we will go 50-50 from now on with this job!  I like that he is a part of this.  I treated myself with some ice cream as a reward :-p

I played dodgeball last night, I’m not sure how I managed it…I really got into the game, played through any paing and kind of regretted it afterwards, my body is a bit sore today!  But I very much enjoyed it, it’s a social league so it’s not overly competitive  and we have a good laugh.  I have no one to blame but myself for my non-stimming related aches and pains.

Any results?  I am excited because my estradiol results are much higher than last time (but not too high!) this has to be a good thing for more mature eggies!!!! My follicles are also growing evenly i.e. they are all around the same size, which is a bit better than last time too.

What’s next? Tonight is hopefully my night of stims (mostly because I only have one vial of menopur left!), hopefully the final monitoring appt Saturday morning, trigger Saturday eve, then Egg retrieval Monday morning.

Weight. NSTR

Waist.  BLOATED

Boobs. Bigger and squishier.

Hours of Sunshine 🙂 None.  We are in the midst of a snow storm!

Fun Activity to keep Dani from going insane. I went to Michaels and stocked up on wool for two new knitting projects! A kid’s cat scarf, and a cable knit scarf.  I have been practicing cable knit and it’s actually not too difficult.  I probably won’t finish them this weekend, but I will make a good start at them.

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Cat scarf knitting project

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Cable Knit Scarf Project

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

IVF Diary Vol II: 19-20 Jan 16

Medication(s) administered and dosage(s). Stimming phase: days 5 & 6. Gonal-F 300 iu & Menopur 150 iu.  I started cetrotide this morning, day 6 (20 Jan) – this is the drug that stops me from ovulating prematurely and losing all those eggs!

Medical procedures undertaken. Monitoring appointment – ultrasound and blood test. So for my last appointment there were loads of people in the waiting room – it was like chaos.  This morning, there was no one except little old me.  It made me nervous!  I don’t know why, but it just did – I wondered if I was an odd ball with my cycle.

What are my symptoms? Tiredness – I am struggling to keep my eyes open today.  I went into work after my appointment and this afternoon I taught a 2 hour lesson as part of our staff development training.  I give a highly interactive class with practical tasks, so it is incredibly draining on the brain as the ‘students’ always have lots of challenging questions for me!!!  I am amazed I survived.  At the end, one of the organisers asked me if I was OK, was I tired?  Clearly I looked pretty rough!

I also have a headache.  It is not dehydration because I have hydrated constantly all day, carrying around my water bottle with me.

The bloat…the bloat….the bloat is on fire!  Aghhh!  How many days do I still have left? I’m just over halfway hopefully!  I am currently sat in my fluffy fleecy pyjama bottoms. They feel sooooooo good!

How do I feel today?  Apart from the tiredness thing, I’m feeling not too bad.  I am excited to be on this IVF journey still and haven’t given up hope just yet 🙂

Any results?  I have 6 follicles in the right ovary and 7 in the left, with a few smaller ones hoping to catch up!!! Last time around my right ovary was the dominant one, this time it is the left.  It looks like I am responding well in terms of follicle numbers similar to last time.  Which is good because they collected 9 last time (6 were mature, 4 fertilised) so I am hoping for some more mature eggies this time around!

What’s next? The same injections then monitoring appt on Friday morning.  The Doctor says I am currently looking good for an Egg Retrieval on Monday!

Weight. NSTR

Waist.  slowly growing 😦

Boobs. Slightly bigger.

Hours of Sunshine 🙂 None.  Snow expected soon!

Fun Activity to keep Dani from going insane. Dodgeball season starts tomorrow evening, I am not sure if I will play yet!  I am doubtful.  But I will go along anyway to support the team even if I don’t play.

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Rahhhhh – Dodgeball is a great place to let off some steam – But not when you are in the middle of an IVF cycle!!!! :_-(

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13 follicles – with a few at 3-4mm left to catch up

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

IVF Diary Vol II: 17-18 Jan 16

Medication(s) administered and dosage(s). Gonal-F 300 iu & Menopur 150 iu.  We tried the injections with me sitting down, Chris preferred giving them to me this way.  It doesn’t make a difference to me either way, they still suck.

Medical procedures undertaken. Monitoring appointment – ultrasound and blood test.  My appointment was at 0830 – I left at around 1000.  There were waaaay too many people in the clinic today for my liking.  Chris came with me because it was a holiday here – Martin Luther King Day, so we were both off work.  That was really nice, especially as we waited for quite some time.

What are my symptoms? Little to report except for starting to feel a little tummy bloat, and a thumping headache.  I bought a new water bottle last week so that I can take water with me everywhere.  I ummed and ahhed between two and decided to buy the bottle that was $5 cheaper.  Got it home and realised it was a piece of crap, can’t put it in the dishwasher and wasn’t BPA free. Bah that’s what I get for being a cheap skate!  Anyway, I’m hoping my headaches are from lack of water (something I can control opposed to if it was being caused by the meds)

How do I feel today?  Feeling pretty good!  I had a lovely weekend not making any decisions.  Chris took me on a surprise date – we went to Dave and Buster’s – a kind of modern day arcade thing with lots of games.  We released our inner kid.  Then afterwards we stopped at Ruby Tuesdays to have a virgin cocktail and share a sundae ice cream.  It was great fun to do something random and just be silly.

Any results?  My uterine lining is looking great.  I have a few follicles, the Dr didn’t count them all, but I’m on track.  I called in for my instructions, and the nurse told me start my cetrotide on Wednesday morning.  This means that I am starting the cetrotide a day later than last time around.  I’m hoping that is a good thing 🙂

What’s next? The same injections on Tuesday, adding the cetrotide injection on Weds morning, then monitoring appointment following that.

Weight. NSTR

Waist.  slowly growing 😦

Boobs. NSTR

Hours of Sunshine 🙂 It snowed yesterday unexpectedly.  It was very random considering the day before had been warm and glorious.  Weather here in Virginia is CRAZY.  They are also talking about 10 -20 inches of snow on the East coast maybe as far down as here on the border of North Carolina, this weekend. So long story short.  I think it is going to be hard for me to get much sunshine this IVF cycle.

Fun Activity to keep Dani from going insane. We discovered that Tuesdays at our local cinema is half price entry and half price food so we will be going to the movies!  I want to see the new Quentin Tarantino film The hateful eight or The Revenant.

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

The saddest thing

The saddest thing about today is that we feel a relief with our miscarriage.  It’s a bit of an oxymoron really.  I am sure it is going to hit me soon, but for now I am feeling a huge weight of my shoulder, I feel 5 times lighter.

I had my blood drawn this morning by a super nice nurse, and I returned to my clinic this afternoon for the results and ultrasound.  It didn’t start off great.  My doctor said my hCG had risen again to 2600 from 1300 4 days ago.  Yikes.  I told her about my bleeding the past two days and how at 2AM I was up passing clots the size of golf balls and had been bleeding for the rest of today.

The two doctors spent an age checking every inch of my tubes, ovaries and uterus.  The ‘junior’ doctor kept pointing to something and saying that she thought it was ectopic, they even switched on the colour flow on the ultrasound to see my blood pumping around, looking for the signs of the tell-tale ‘ectopic donut’ where blood flows around the pregnancy.  But my doctor said no, that was definitely not ectopic, and she has seen lots of ectopics in her career (she this out loud!!).  Especially now my hCG levels are much higher they really would expect to see something by now.  I am very appreciative of the amount of time they took to look,  particularly in comparison to the on-call doctor and other senior doctor at the weekend who spent 1/8 of the time hunting.  My doctor said with an ectopic pregnancy I wouldn’t get bleeding with such large clots so she thinks it is very unlikely I am ectopic.  I am SO GLAD I listened to my gut instinct and said NO to taking the methotrexate.

So the conclusion?  It takes a few days for hCG levels to drop after a miscarriage begins therefore I will return on Monday next week for another blood test to check they are dropping and this is in fact a miscarriage.  I have got a sick note for the rest of the week off work, so now for a bit of chilling out and eating lots of chocolate (seriously I have eaten a lot of chocolate already today).

I’m not completely in the clear just yet, we need to see my hCG levels drop and I need to pass whatever it is that has been growing in me causing my hCG levels to rise (prob. the placenta).  The ‘junior’ doctor is on call this weekend, she said ‘don’t call me!!!’  she really meant “I hope you don’t need to call me!!!”…bless, she is lovely in her very quiet way.

My doctor reckons 6-8 weeks before I get a normal period returning, then we wait a natural cycle, start the Birth Control Pills and then can start a new round of IVF again or do a Frozen Embryo Transfer (FET) – whatever we want 🙂  This will put us at Christmas time :-s

Miscarriage is a terrible, sad, painful and hurtful experience.  At 2AM last night when the big clots were passing I felt lonely and slightly terrified, I tried to sleep through the waves of pain but it was impossible, I finally fell asleep again at 5.30AM.  I don’t know how long the physical pain will last, but I know that the psychological pain will last a whole lot longer.

For anyone who is reading this and currently experiencing a miscarriage right now, my heart truly breaks with you too – may be you have found this web page already, but I thought it was very useful: Coping with Miscarriage  http://carikay11.hubpages.com/hub/miscarriagerecovery .  Knowing that miscarriage is so common (1 in 4 pregnancies end in miscarriage) makes this even harder, because I think about how many of my friends and family have silently been affected.  I am so sorry you had to go through this – because this truly sucks X

Tomorrow is M-Day (Methotrexate Day) Ummmm NOT!

Yesterday I started to properly bleed, but it was on and off and only about a regular pad’s worth of blood.  Today I woke up with spotting. Damn it I thought.  But then at lunch time it came – the bleeding got heavier and has continued today.  I think my body is going to deal with this naturally.  I am starting to feel more positive about me saying no on Sunday to the methotrexate injection.

Today I rang up my clinic and explained what happened over the weekend.  After multiple calls from various nurses and doctors, this evening we eventually decided upon a plan of attack.  Tomorrow morning I go for a beta blood test, then in the afternoon I will return for an ultrasound.  By that time my doctor will be free out of surgery so she can see me personally, and she will have my blood test results.  So fingers crossed my hCG levels are in fact going down – surely they must be if I am bleeding this much? Otherwise if they are still increasing she wants me to take the methotrexate.

My liver function blood test results all came back normal, but my Blood Cell differential results didn’t come back exactly all normal.  But they are not too far from the normal limits i.e. pointing towards anemia. It will be interesting to see what the doc says.  I know what is normal for me because my work makes me take an annual medical which includes a full blood cell count – I’ve always had quite low numbers and is why I take multi-vits to top me up – perhaps it is just the IVF treatment, or perhaps it is normal for a pregnant lady.  But we shall find out tomorrow!!!

Compared to this, the 2 week wait will feel like a breeze

Warning – grumpy Dani on the loose!!!

  1.  We turn up to my ‘monitoring’ appointment this morning, sign my waiver which only has a beta blood test and no ultrasound listed.  I point this out to the receptionist…she checks my notes, apparently in my notes my doctor said only for a beta because it was too early to see anything on the ultrasound.  Hmmmm, this is not what my doctor said on the phone on Thursday!!  She said now that my hCG levels were over a 1000 perhaps we would find Waldo this time!  Receptionist talks to doctor and adds the ultrasound to the waiver form.
  2. A nurse I have never met before takes my blood…after making me almost pass out.  She jabbed hard with the needle, Chris was watching, I wasn’t but it was REALLY painful.  He was pulling faces at me from across the room because he could see that the nurse did not have control over the needle – even with a butterfly clip the needle apparently flipped 180 degrees.  She was not apologetic and had not appreciation for the pain on my face or that she had even done anything wrong.  The other day when a nurse hit a valve she was so apologetic, but it barely hurt so I told her not to worry.  The nurse today – I give her a big fat Freddie F for FAIL.
  3. We waited an hour after my blood draw for the ultrasound.
  4. Once we are in the ultrasound room, lucky me – I get two different doctors again, one I have never met before – my doctor was not working Saturday.  Fair enough, everyone needs a break!!! No Waldo found today.  BUT both Chris and I noticed that my uterus looked different from the previous 2 ultrasounds, I think this is one of the downsides of having different doctors monitoring me.  Basically, the doctor sent me to have more blood drawn in preparation to take the methotrexate if my beta hCG levels are still rising.  They even discussed whether the labs would be able to get the results today stat and could get a prescription in at the campus hospital for them to administer tomorrow (Sunday).  They thought it would be possible.  We sat there nodding our heads.
  5. Chris asked if a different nurse could draw my blood as he explained the ineptitude of the earlier nurse.  I will admit that I was annoyed that Chris asked this because I would have preferred not to have caused a fuss, and being a reserved Brit, probably would have told the nurse that she had really hurt me earlier and shown her the bruises she left – then at least get an apology from her.  Anyway, the doctor kindly arranged for me to have a different nurse draw my blood from the other arm.   Blood drawn – nurse hits a valve – may be my body is telling the nurses it is done with blood draws.
  6. We wait for results all day.  It is now 9PM and I have not had a phone call today.  In the UK, if the doctor doesn’t call it’s a good thing.  I’m not sure that’s how it works here?  Chris thinks it’s a good thing.  I think the tests were not done ‘stat’ and there were simply no results today – usually the nurse would call to update me, but because it is a Saturday and we seemed to have got one nurse into trouble, no one has updated us.
  7. I am still pregnant unknown location (PUL) – i.e. rising hCG levels and no visible sign of pregnancy on ultrasound.

I have been concerned today that the on-call doctor wanted me to take the methotrexate tomorrow – but I realised after the appointment that my doctor had said she thought that as long as I have no symptoms and there is no pregnancy on the ultrasound she would keep monitoring me until I am 7 weeks pregnant (3 days time).  So I wondered how that would work – if the on-call doctor had a different opinion to my doctor, would my doctor be pissed.  I was planning on talking to the on-call doctor about this when I got my results, but this seems to be a moot point now she hasn’t called today.

I’ve done a bit of research into my situation of possible ectopic pregnancy and there is quite a bit about misdiagnosis of ectopic pregnancy.  Basically, doctors prefer to diagnose ectopic early to avoid rupture of the fallopian tube.  This makes a lot of sense….except there are many cases where doctors have been too early in their diagnosis and effectively terminated a healthy uterine pregnancy mistaking it for ectopic.  The most up to date information I found on PUL, ectopic pregnancies and methotrexate was discovered from an article: “Tragically Wrong: When Good Early Pregnancies Are Misdiagnosed As Bad“.  The author of the article is interviewing a Dr Peter Doubilet, one of the authors of a well written research paper: “Diagnostic criteria for nonviable pregnancy early in the first trimester

I am literally copying the introduction to the article, written by Carey Goldberg, because I thought it was worth sharing, but the full article can be found here:  http://commonhealth.wbur.org/2013/10/ectopic-pregnancy-misdiagnosed-methotrexate

A beautiful, supremely talented young friend of our family recently fell victim to a terrible medical mistake. Newly married, she was having some pelvic pain and bleeding, and the doctor who saw her diagnosed a probable ectopic pregnancy — an embryo that develops outside the womb. Concerned that such pregnancies can turn life-threatening, the doctor prescribed the standard treatment: methotrexate, a drug used for chemotherapy and to help induce abortions.

When our friend returned to be checked a few days later, the imaging revealed that in fact, the pregnancy had not been ectopic; it was in place, in her uterus. But because she had taken the methotrexate, a known cause of birth defects, her pregnancy was doomed.  She soon miscarried. What may have been a perfectly healthy pregnancy had been ended by well-meant medical treatment.

I assumed her horrifying case was an exceedingly rare medical fluke — until now. A paper just out in the prestigious New England Journal of Medicine shows that such misdiagnosed pregnancies are part of a pattern — a pattern that needs to be changed. “Considerable evidence suggests that mistakes such as these are far from rare,” it says.

When I told our friend’s story to the paper’s lead author, Dr. Peter Doubilet, he responded that he knows of “dozens and dozens and dozens of similar cases that have come to lawsuits, and that’s probably the tip of the iceberg.” There is even a Facebook group, Misdiagnosed Ectopic, Given Methotrexate, run by a mother given methotrexate whose daughter was born with major birth defects.

The New England Journal of Medicine paper stems from a panel of international experts who resolved to change medical practice to stop such misdiagnoses.

When I read the research paper the most interesting take away for me was:

  • Women with a pregnancy of unknown location (PUL) and hCG levels of 2000 to 3000, the likelihood of ectopic pregnancy is 32.7%, the likelihood of nonviable intrauterine pregnancy is 65.5% and 1.7% for a viable intrauterine pregnancy.
  • Women with a PUL and hCG levels of 3000 or more, the likelihood of ectopic pregnancy is 33.2%, the likelihood of nonviable intrauterine pregnancy is 66.4% and 0.5% for a viable intrauterine pregnancy.

The authors recognise that these likelihoods are not highly precise, and there are some limitations to their data, but they argue that this does not matter, it purely demonstrates that ectopic pregnancy is not the likely outcome in PUL.  However, they point out that this is only true of the woman is hemodynamically stable and not presenting with abdominal pain. The one thing that was comforting to see was that there is limited risk in taking a few extra days to make a definitive diagnosis in a woman with PUL.

There is also one other interesting thing I discovered after looking up the facebook group  “Misdiagnosed Ectopic,Given Methotrexate”.  PUL is very common in women with a tipped (retroverted) uterus.  Why?  Because it can be harder to see an early intrauterine pregnancy on transvaginal ultrasound and may not be seen up to week 8.  A lady who created the website misdiagnosed miscarriage says that no research has been done on the relationship with retroverted uterus and misdiganosis of miscarriage.

What is my conclusion?  Keep going to the monitoring appointments, if I have pain – take myself to ER straight away, wait until my hCG levels rise enough to see something on the ultrasound- then we can make an informed decision on which drug to take to aid my miscarriage. – Or best of all situations, I just miscarry naturally.  Really, the next 2 week wait is going to seem like a breeze compared to this.

Where’s Waldo??

“Where’s Waldo? – Do you know who Waldo is?”

My doctor asked me as she used the vaginal ultrasound to search my uterus and fallopian tubes for a potential sac.  Today at my ultrasound appointment my doctor carefully searched as she discussed it with the more ‘junior’ doctor.  The ‘junior’ doctor also had a go with ultrasound wand.  But nothing was there – not even that black teeny dot from Tuesday was there anymore.

My hCG went up to 1066 from 686 (55% increase in 44 hrs).  This is not the direction my beta levels should be heading in right now.

My doctor helpfully told us today that her cut off is 7 weeks for a decision on whether to use methotrexate; in the mean time if my hCG continues to rise she will closely monitor me every 48 hours with ultrasound and beta blood tests until 7 weeks.  Today I am 6 weeks 2 days pregnant, so only 5 days left for me to miscarry naturally. She is now more confident that when I return on Saturday they will see the growing empty sac now that my beta hCG is above 1000.  The question remains – where will this empty sac be?  We are still hoping it will be in the uterus and not the fallopian tube.

So I’m still on ectopic watch for now.  I have no bleeding or spotting, the odd pain twinge here and there, today I woke up a bit more nauseous and I’m starting to pee a lot again, so my ‘pregnancy’ symptoms are now returning as my hCG levels continue to rise.  But overall I feel physically well, a little bit mentally drained.

Today I took a sick day which was a good idea because I am not sure my brain could have coped with work today, instead I spent some time doing adult colouring in.  Very therapeutic, but sometimes I can’t stop because I don’t like leaving things unfinished, and then it stops being therapeutic as I create a chore for myself!!!

Anyway, until Saturday…..we continue to wait.