I survived!

Of course I survived…no one dies from an HSG right?!?!

As I sat on my own in the procedure room waiting for the doctor I noticed just how dated everything in this room looked.  I also noticed two capsules stuck with cellotape onto the wall behind the head of the bed and the other on the needle disposal box.  I was intrigued because they said ‘amonia’ on them.  I wondered why these capsules were stuck there.  As more time passed I finally figured out what it was for – smelling salts for passed out patients! There was a piece of paper stuck on the wall that gave steps of what to do in an emergency – the kind of emergency when  patient passes out and you have no clue what is wrong with them.  The first step said: Keep calm! I found this quite amusing that a doctor/nurse needed to be reminded to keep calm first of all.  One of the other steps described how to use the ammonia capsule to see if the patient ids responsive. There was another sheet of paper stuck on the wall next to these emergency instructions, giving instructions for what to do if a patient was having an allergic reaction.  I suppose some poor people in the past have found out that they truly are allergic to shell fish or iodine as a result of this HSG procedure! So I guess you can die from an HSG afterall.

After waiting for 20 minutes ready to go, the doctor came in and introduced herself – as if I had never met her before.  She didn’t recognise me at all.  Even with my British accent she didn’t recognise me and proceeded to ask me questions as if I was a new patient.  Considering the number of times she has seen my vagina and cervix (I can count 8 monitoring appointments and 2 inseminations) I was a bit upset by this fact.

So we got down to the business….and the procedure hurt so much that I had tears in my eyes.  It was all over after only 5 minutes, but they were a painful 5 minutes.  I peeked at the video of the x-ray as she was cleaning me up.  I could see my upside down uterus and the dye free flowing through my tubes.  And then something weird happened – my uterus flipped upright at the end of the procedure!  I felt her do something weird, did she manipulate my uterus? Or was it just the xray moving to a different position?  Logically the latter doesn’t make much sense…but then again neither does the manipulation! I’ll know exactly what happened when I go for my baseline ultrasound in the new year.

Good news is that I passed the test!! IVF round 2 is on in the new year!!

After the procedure I went back to the waiting room to pick up Chris because he wasn’t allowed in with me.  And there sitting in the waiting room was someone I knew.  It was funny because Chris was sat with his back to them and he didn’t realise he knew them.  It was a bit of a bizarre moment because I guess we didn’t really know what to say to each other.  I don’t know why they were there specifically, but I feel a little sad that infertility affects so many of us around us we just don’t know about. Today was just another reminder of that fact.  Infertility – you truly are a sneaky bag of crap.

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

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 😐

How to get the most out of your doctor

It took me about 24hrs after it was confirmed that I am pregnant to realise I do not know how to be pregnant.  This might seem very weird considering we have been talking about this moment for more than two years now.  Once we started trying to conceive I just of buried my head in the sand.  I didn’t want to jinx our chances by buying a book about it, and I started to avoid all pregnancy related websites and apps after 6 months of failing to succeed in our quest to make a baby.  I know the basics, like smoking is a big no-no, drugs are dangerous, avoid raw meat and reduce caffeine, but really, that is the limits of my knowledge.  So yesterday we went to the book store and bought two books on pregnancy.  One was the standard text book “Great expectations: Your all in one resource for pregnancy”, and the second was “Expecting Better”, beautifully demonstrated in this picture by Sushi:

Sushi, my book keeper

Sushi, my book keeper

This second book interested me because I have always wondered whether Japanese women stop eating sushi, or French women stop eating brie when they are pregnant.  Really?  I don’t think so.  I hope that this book will enlighten me to what the conventional wisdom really means.  But when I started reading the first chapter I didn’t need to go much further with it to be completely satisfied with my purchase.  Why?  Well the author, Emily Oster, is not so different from me, she was not happy with what her doctor was telling her.  I realised that my experience with my fertility clinic’s doctors and the feeling I had that there was a poor lack of communication.  All of this was because I was not asking the right questions.  I didn’t know I needed to ask them.  And this is silly because all along I had the key questions in the back of my mind…I use them everyday at work!!!

In my job I help leaders make decisions every day…I do this by presenting the evidence, the facts – for and against a decision – I do some analysis on the data that supports the decision, I try to be unbiased and objective in my analysis, and then I present a recommendation to the leader on the best course of action.  The leader doesn’t always go with my recommendation, but I have presented them with the facts and figures to make their own mind up.  Sometimes I feel a bit hurt, but then I remember, I am not the one taking the risk.  So when it comes to our healthcare and doctors, WE are the decision makers.  We need to be presented with the arguments for and against, and be told what the supporting evidence is.  WE are unique in many different ways and the decisions we make will be unique, blanket guidelines are not always appropriate for everyone.

I think a good example of this is when we were told we should do ‘ICSI’ because of our unexplained infertility.  We didn’t ask the questions:  What are the pros of ICSI?  What are the cons of ICSI?  What are the improved success rates with people like us? (i.e. what’s the supporting evidence/data?)   We were not armed to make a decision, we just went with what the doctor said, and in the back of my mind I felt like I had not been given a chance to make a decision.  I did actually do a lot of this research myself, but it would have been better if my doctor would have told me – after all I am not the medical professional, I just have the fortunate ability to interpret statistics from studies and experiments.  So although I was finally happy with the decision to do ICSI after my research, something inside me was niggling about our doctor’s communication.

Another example is when it came to our embryo transfer.  We were told that it is the standard practice at the clinic to transfer 2 embryos on day 3, unless there were over 6 fertilised embryos then maybe we would be a candidate for waiting to Day 5 to transfer 2 blastocysts.  We did not ask the questions: what are the pros of us waiting to Day 5? What are the cons of us waiting to Day 5?  What are our personal chance of success with 4 fertilised embryos compared to if we had had 6? (i.e. what’s the supporting evidence/data?).  Again, I did a lot of this research myself.

I could go on with other opportunities throughout our infertility treatment where I could have asked these three simple questions that would have revealed the knowledge I needed to feel like I was in control of making a decision.  We rely on doctors to make the decisions for us…and most of the time I am happy with that fact, but there were times that I felt like we should hold that responsibility for a decision.  When it comes to my pregnancy I want to be able to ask these questions to my doctors and nurses so I can take the responsibility for making some of the big decisions such as prenatal testing or birthing plans.

Emily Oster suggests reading the book “Our medical mind: How to decide what is right for you” by Jerome Groopman and Pamela Hartzband.  I think I might try it, and I’ll let you know how it goes.  Has anyone read this one?

In the meantime my friends, next time you are in a consult with your doctor, remember these three simple questions to help you make the best decision, for you, and get the most out of your doctor….

  • What are the pros (for me)?
  • What are the cons (for me)?
  • What is the evidence/what are the chances (for me in particular)?

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.