Avoiding the Mirror

I have been avoiding the mirror a lot lately.  I look at my face in the mirror, but not my body.  I can’t even look down, when I shave my legs I avoid looking at the area between my legs and boobs.  It’s the part of my body that feels disgusting to me (apart from feet – feet are pretty disgusting to me too).  I don’t necessarily mean that I am disgusted with the way my physical body looks, but I have some strange issues with my stomach in particular.  Both in the physical and emotional sense.  I am slim build, lucky to have a fast metabolism, I don’t have any eating disorders, I love food and we have a good relationship (except for the sugar, sugar and I are always going at it head to head!!).  So this doesn’t have anything to do with me thinking I am fat.

I have Irritable Bowel Syndrome (IBS) and this means that I suffer from random stomach pains and I get terrible bouts of diarrhea.  Certain food and stress triggers my IBS.  My relationship with my stomach has never really been a good one.

The worst issue I have are things touching my stomach – whether that is me, my clothes, the cats or even Chris.  There are times in the day where I cannot bear for things to touch my stomach – even my stomach touching the stomach (i.e. when bending over).  I hate the way it feels.  I have tried to explain it to Chris many times and even to myself, but I just can’t put words to how it makes me feel.  Disgusted is probably not really the right word, but it’s pretty close to how I feel.  But then there will be occasions when I am absolutely OK with my stomach being touched – I am unpredictable, there is no way of knowing if it is OK or not.  It is worse after I have just eaten, but I can often mitigate this by having a hot water bottle on my stomach, this helps for some reason.

The weirdness of not touching my stomach also extends to not looking at my stomach.  I don’t know why, but may be I have so much hate for the pain and grief it has caused me over the years.

Add in the bloatedness from the stimulation drugs from this IVF cycle and the problem perpetuates.  I hate squeezing my tummy ready for the needles, I hate touching it and I hate looking at it.

What will I be like when I am pregnant?  Well from the short period of time I have been pregnant I think this weirdness will still prevail, will it get worse?  I hope not!  For Chris’s sake at least because I know he will be wanting to feel close to the little one growing inside of me!

dani in the mirror

Mirror, mirror on the wall…..

 

Preparations for IVF Round 2

This week My nurse ordered my medications in preparation for IVF round 2.    Our doctor did tell us that she might up the stimulation drugs…but I didn’t know it might be DOUBLE 😦 Last cycle I took 300iu Gonal-F and 75iu Menopur.  This cycle I will be starting off with 400iu Gonal-F and 150iu Menopur.

Menopur is the one that frigging burns too 😦  The nurse said to me “Don’t worry, it’s still one injection.”  Well, I guess in that case I should count my blessings!

When I spoke to Freedom Fertility Pharmacy (my favourite people – not!) after telling them I am likely to be starting stims on 7th Jan, the lady on the phone said….”Great, should I schedule a delivery for your medication to arrive the 5th Jan?”.  Ummmm no, that is way too close for my comfort, and after your previous perfomances, I just don’t trust you!! (OK, so I didn’t tell her it quite like that!!).  I don’t need that stress again!

Now….just to wait for my period to start next week!  Fingers crossed all goes to plan.  But for now, this is me signing off the great pudding club hunt for a week of festivities.

Have a very merry and peaceful Christmas everybody!!! XXX

 

Effects of flying and jet lag on fertility pt 2.

In my previous post I described some research that indicates fertility may be effected by the disruption to the body clock as a result of travelling across time zones (or any other job that requires shift work).  There is one hormone that may be taken as a supplement to help overcome and regulate the problems our bodies face as we fly in to different time zones – melatonin.

Melatonin is not new to me.  Some of my US colleagues have told me about the use of Melatonin to help them overcome their jet lag quickly when they are in Europe.

Last year I landed in Germany with a terrible headache that had lasted more than two days, pain killers just didn’t touch it, and I couldn’t sleep – which was probably perpetuating my headache.  So my US colleague suggested I took some melatonin to help me sleep and kick start my body into a natural rhythm.  He warned me that melatonin can have side effects, such as vivid dreams.  I already dream a lot normally, and I had problems in Afghanistan with Anti-Malerial drugs causing vivid dreams and hallucinations; so I was very cautious of taking melatonin.  But I was willing to give it a try as by my third night in Germany I was consistently unable to fall asleep until about 5AM, then working all day with this awful headache.  So I took two of the little melatonin pills, and they helped me to fall asleep before midnight.  Bliss.  I did have some vivid dreams, actually they were more like nightmares, but at least I got some shut eye!  My headache didn’t disappear though, so I decided not to take any more melatonin. I was more afraid of my dreams than my headache.

I didn’t know much about melatonin at that time; I didn’t really look into it.  But since suffering from infertility I have been educated more into melatonin and its purpose.  I came across it in the book “It starts with the Egg” by Rebecca Fett, but I didn’t pay it much attention.

So what is melatonin?  It is a hormone that helps regulate many other hormones in the body and helps to maintain our body clocks (or circadian rhythms).  During light hours of the day, our natural melatonin production drops and when it is dark, the body produces more melatonin.  If we are not exposed to enough light during the day or too bright artificial light in the evening this can disrupt the body’s natural melatonin cycle.

What does melatonin have to do with fertility?  Melatonin is produced by the pineal gland in the brain, but it is also produced by the follicles within an ovary, the mass of cells that surround the follicles, and in the immature follicle itself.  It is here where melatonin acts as an antioxidant which supports cellular health and protection of the immature egg from oxidative stress, especially at the time of ovulation.  Melatonin has beneficial effects not just on eggs but also on embryos.  Mouse embryos grown in a lab with melatonin showed an increased rate of forming bastocyst-stage embryos [1].  As a result of this success, clinical trials were undertaken.   A study of 115 women showed that melatonin may increase egg quality by reducing the level of one oxidising agent called 8-0HdG in the ovum, which is a natural product of DNA oxidation [2].  Women who were given melatonin had a fertilisation rate much higher than their previous cycle and nearly 20% of the melatonin treated women became pregnant.  Whereas only 10% of the non-melatonin group became pregnant.

Melatonin also helps to control body temperature, the timing and release of female reproductive hormones and possibly egg quality.

Finally, melatonin is known to act as an antioxidant during early pregnancy.  In addition, melatonin in the mother’s blood passes through the placenta to aid the creation of the fetal suprachiasmatic nucleus (SCN) where the central circadian regulatory system is located.

Melatonin levels decline with age, and as a result the ovaries lose their natural protector against oxidative stress; hence could be an additional contributor to age-related infertility.

If you are going to consider taking melatonin as a supplement when trying to conceive you need to be careful and should ask your doctor, because the melatonin supplement may disrupt the natural hormone balance and interfere with ovulation.  If you are going through a controlled hormone cycle with IVF this is less of a concern.  In addition, melatonin can cause side effects, such as daytime droziness, dizziness, and irritability and may worsen depression.  Melatonin can also interact with other drugs, so this is why it is important to check with your doctor before taking it.

If you are going to take melatonin as a supplement whilst travelling it is also important to know what time to take it.  You should take the supplement after dark the day you travel and after dark for a few days after arriving at your destination.  In addition, taking melatonin in the evening a few days before you fly if flying eastward.  Again, there is caution to be made here because the long term effects of taking the supplement are unknown.  Therefore this is not overly helpful for airline attendants or shift workers, and only for those who travel infrequently.

For me, personally, I am undecided as to whether or not I will take melatonin as a supplement for either my next IVF cycle or when I am on my next international trip.  But I will certainly be asking my doctor next time we speak.

Have you taken melatonin as a supplement? What are your experiences with it?

flying

[1] The effect of melatonin on in vitro fertilization and embryo development in mice.  Available here: http://hera.ugr.es/doi/15015646.pdf

[2].  The role of melatonin as an antioxidant in the follicle.  Available here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296634/

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

Just when you thought it was safe

If you have read my earlier post from today, you will know I was waiting for my hCG results, my doctor was expecting to see a drop or at least a similar level because I have bled so much since Monday.

I got the call at 2.15pm, my doctor said ‘Your levels have increased again to 3200 (from 2600 yesterday), I want you to take the methotrexate.  There has to be something growing somewhere other than your uterus.  When can you come in?’.

Fortunately Chris was with me because he was working from home, so we were out of the house and on the road to the fertility clinic.  We had to stop by the pharmacy to pick up the methotrexate.  The pharmacy was in a children’s hospital.  I joke with you not.  The pharmacy was having problems processing my insurance details, so we waited about 45 minutes.  Babies and children EVERYWHERE.  It was a very cruel joke.  Then to top it all off, it turns out my insurance wasn’t going to cover it.  Well – using methotrexate to effectively abort a pregnancy is an off label use of the drug.  Duh.  Of course my insurance wasn’t going to cover it.  Fortunately, the pharmacist used a coupon and it only cost us $23.

Finally we arrive at our clinic, drug in hand.  When 5 doctors are telling you to take the methotrexate, it’s time to listen.  If my hCG levels got any higher I would not have been eligible to take the drug and surgery would have been my only alternative option.  We are not completely out of the clear…the drug is effective only 90% of the time.  In 7 days time we find out if it actually worked – and of course I’m still on ‘ectopic rupture watch’ until then.

One of the doctors injected the drug into my buttock muscle…honestly, all I was thinking was – can’t a nurse do it?  Only because he asked where I would like it to be injected arm muscle or butt muscle (nice to have the choice!), we decided on butt muscle – he then turned to my doc to ask where would be a good place on the butt!  This was the point I was nervous!! But I think it had to be the doctor injecting it – I don’t really know.  It was painless compared to progesterone butt injections, the needle was a lot smaller though.

Methotrexate comes with a long list of side effects…I am already experiencing two of them (though these should only last about 24 hours and are relatively normal) – tiredness and nausea – they hit me about 3 hours after I was given the injection.  I won’t list the things I have to watch out for as a side effect, they can easily be found by googling ‘methoretexate ectopic pregnancy’.

We are truly gutted this had to be our course of action, but it seems to be the safest considering the large unknown growing inside me 😦

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!!!

I said NO…am I crazy?

The on-call doctor called me first thing this morning and apologised she had not called yesterday with my results (she did have them yesterday after all and gave no reason).  She said my beta hCG levels have risen again and she wanted me to come in today to take the methotrexate shot.  I asked her if she had spoken to my doctor (- no she hadn’t) because my doctor had said she would keep monitoring me up to 7 weeks for a visible confirmation of ectopic before administering the methotrexate.  7 weeks was her cut off point.  The on-call doctor said it was ultimately my decision, but it would be against their recommendation not to take the methotrexate today.  She also checked with the other senior doctor who was there with her, and he said it was OK for me to wait – despite it being against their recommendation.  I said OK and asked when can I come in for another ultrasound, she said it was up to me.  My doctor isn’t back in the office until after the holiday weekend, Tuesday.  This is when my doctor said her cut off point was.  So I told the on-call doctor that I will wait for my doctor to come back.  I also asked what was my actual hCG level because she hadn’t told me up to then – it was 1300 (up from 1066 48 hours ago).  That was a lot less than I expected.  I have a feeling it’s tailing off.  Here is my chart:

Normal hCG levels compared to my hCG levels

Normal hCG levels compared to my hCG levels (Note this is on a Log scale)

The on-call doctor told me to call her anytime I wanted to change my mind, and please look out for any pain.  After I got off the phone, I panicked.  Chris was still asleep in bed at the time of the phone call so I woke him and basically cried at him.  He says he supports my decision, but wants me to take the methotrexate.  Ultimately I feel like crap right now.  I have had SO MANY unknowns from encounters with doctors and I am sick and tired of it:

  • When I was 18 I went to ER because I had a random massive vaginal bleed.  They couldn’t tell me why.
  • When I was 19 I spent a year in and out of doctors trying to diagnose my abdominal pains.  I was eventually diagnosed with Irritable Bowel Syndrome (IBS), but there is no test to confirm this, it was their last thing in the box (I know I do have IBS, but really we don’t know why – and no one really knows what causes IBS).  I could have endometriosis too, but IBS explains the pains too.  They couldn’t tell me why.
  • When I was 20 I ended up in an ambulance being taken to ER because I passed out from abdominal pains.  I freaked out a lot of people.  They suspected that it was IBS related after eating 3 days of ration pack food in the field whilst on Army Exercise.  But really – they couldn’t tell me why.
  • We can’t have a baby without medical intervention.  We have unexplained infertility.  They can’t tell me why.
  • I’m pregnant, but they can’t see anything on the ultrasound at 6W4D and hCG level of 1300.  THEY CAN’T TELL ME WHY.

What is wrong with my body?  It’s like I have a black box body of unknown-ness.  Am I actually an alien??!

Honestly, I think I might be going crazy for not taking the methotrexate, but there is something that just doesn’t feel quite right about it.  Why don’t I want to take this drug? Because I’m very afraid of the side effects and being put through this unnecessarily if the abnormal pregnancy is in fact just growing slowly in my uterus and not one of my tubes.  Methotrexate can really mess with your gut, and my gut really is bad enough as it is.  I am not even bothered by the fact that we have to wait 3 months before trying again – I will WELCOME this after everything we have experienced the last 2 weeks.  Chris thinks I should take the shot so we can end this right now, mostly for the psychological pain, plus of course he is worried I will end up in hospital. Aghhh.  This truly sucks.

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.

Sad, but starting to feel mad

This afternoon I had my mobile (cell) phone with me on loud so I could hear the doctor ring with my results.  I get a lot of notifications and pings every 5 minutes so I am sure my colleagues were getting annoyed with me.  But anyway, I received three pings all at once, which I thought was odd, so I checked my email to find a notification from my clinic for a new appointment, with my doctor tomorrow morning (The three pings were from my email and app that tracks my appointments).  Well isn’t that just nice?  My eyes started to well up because I knew this had to be bad news – what a crappy way to find out?  After 20 minutes of consoling myself, I finally received the call from my doctor.  My hCG levels have continued to rise again to 686 (Tues) from 345 (Fri).  Not good news.  So my doctor starts talking more about this potentially being a tubal (ectopic) pregnancy…she didn’t really tell me anything new from yesterday, she stressed again that there is zero chance that I have a viable pregnancy (OK so I got that from yesterday when there was nothing on the ultrasound).

Tomorrow morning I will have another ultrasound to double check my uterus for a (non-viable) pregnancy and some blood tests to see if I am suitable candidate for the drug methotrexate.  I have done a bit more research into this drug, and I really want the doctor to explain all tomorrow – I will be using my 3 point guide to help me feel better informed!  The best guide I found is from the NHS:

“The use of methotrexate to treat pregnancy of unknown location and ectopic pregnancy” available here.

I have been having some random (but not sharp) short pains today, including pain on the left side.  I have also not passed any blood today.  The problem is with Irritable Bowel Syndrome for me is that stress causes pain, so I am having a hard time distinguishing between the two – I don’t feel stressed per se, but this rollercoaster surely can’t be good for my gut.

In the meantime I’m looking forward to tomorrow’s appointment as I move from feeling sad to feeling mad – mad that this feels really unfair and crappy.  I’m taking bets on how many med students/doctors/fellows/nurses they can squeeze this time in the room for my ultrasound tomorrow…..I have a feeling there will be some interest 😐