Emotions of Loss - Part 2

Going through an ectopic pregnancy for a second time, initially, was not as scary.  I knew the hospital, the staff, the tests, and the terminology.  Yes, I was emotional, but I recognised the grief.  But as the process became more and more drawn out, I couldn’t understand why I continued to be so emotional.  I’d been through this before.  Surely I should be coping better than this?  Couldn't I just brush it aside and get on with recovery?  But I learned there is no Get Out of Jail Free Card in grief, even if you have been there before.  Grief compounds grief.  My hopes had been high, and were dashed.  I had been stressed and emotional.  In retrospect, it’s not surprising I found it hard.

Our expectations, our hopes and dreams, changed hugely over a matter of weeks.  From the positive pregnancy test when we hoped and believed it would be okay, to the time when we realised we’d lost the baby, but hoped and believed it was “only” a miscarriage.  To finding ourselves hoping and believing that it was “only” an ectopic pregnancy, not cancer, or that if it was cancer, it would be easily treatable.  Worst case scenario – the meaning of those words changed dramatically over those weeks. 

I was in disbelief.  I knew ectopic pregnancy was dangerous.  But I didn’t know there were other ways a pregnancy could kill me.  And I was torn between fear that I might have cancer, and fear that having cancer might mean that I could not try to conceive again for at least a year.  With pregnancy hormones swirling about in my body and brain, I was more concerned with the consequences of cancer on my fertility, rather than the consequences of cancer on my life.  I was able to look at myself at the time, and be amazed at this.  But it didn’t change the way I felt.

The results were a relief.  But the ongoing surgeries and procedures necessary to resolve my pregnancy, each one with their own real dangers, were tortuous - more so emotionally more than physically.  It was the uncertainty, and the waiting - the months of waiting before I even knew if I could try again - that I found incredibly hard.  I was more stressed than I had ever been.  After all I was 40.  Time was running out.  And I was panicking. 

Ectopic Awareness Raising – Part 2

Warning:  This post may well contain TMI.

Just over a year after my first positive pregnancy test, I conceived again, but this time it took the help of a fertility specialist.

I had a strong, early, positive pregnancy test.  I had traditional pregnancy symptoms – fatigue, even nausea.  How I relished that nausea.  With a history of one ectopic pregnancy, my doctor wanted me to get blood tests and an early scan (at about 6 weeks pregnant).  In fact, she’d given me the forms for blood tests even before I got pregnant, and just said – use them.  The tests would tell if my hCG levels were rising appropriately.  They’re supposed to double every 2-3 days.  If they don’t, then the pregnancy is possibly an ectopic.  But I got my positive close to the end of the year, and I couldn’t get the tests done as we were travelling south for Christmas.  I figured I could wait and get that scan after the New Year.  After my experience a year earlier, I knew the symptoms of an ectopic, and I knew to get to the doctor if things weren’t right.  So I relaxed, we both relaxed, and enjoyed it. 

Until things started going wrong.  Bleeding.  Lots of it.  Too much.  None of the classic ectopic symptoms, though.  Pain, for example.  Any woman of child-bearing age who has abdominal pain should be tested for pregnancy, and an ectopic should be ruled out.  It saves lives.  But we don’t all get pain.  I hadn’t had any pain with my ectopic the previous year, so I knew that pain – whilst it is a common symptom – didn’t have to be present for my pregnancy to be ectopic. 

At the end of December, after I returned home, and things deteriorated, I began an interminable process of hospital visits, and blood tests.  This time though my hormone levels were high. The doctors treated me for a miscarriage, then an incomplete miscarriage.  But my levels continued to rise.  I ended up in hospital, having emergency exploratory surgery and a D&C.  “You’ve miscarried,” I was told.  “There was no sign of an ectopic.”  I went home, looking forward to recovering, then trying again.  But once again, the quality of the health care I received probably saved my life.  They continued to check my blood levels, and waited for histology results.  My levels continued to rise.  Obviously this was no miscarriage.  But it wasn’t a viable pregnancy either. Finally, after many more days, more scans, and many more long, boring, worrying hours waiting at the Women’s Health Assessment Unit, I was diagnosed with a second ectopic pregnancy.

To be more accurate, this one was a cornual ectopic pregnancy (now more accurately called an interstitial pregnancy).  Only about 1-2% of all ectopic pregnancies (themselves about 1-2% of all pregnancies) are cornual.  So they are rare.  This type of pregnancy almost makes it to the right place, but not quite, implanting in the area where the blood supply enters the uterus.  This was probably why my hormone levels were so high – compared to a fallopian tube, there was room (and a blood supply) here for the pregnancy to grow.  It is as a result one of the most dangerous types of ectopic pregnancy; if it ruptures, the outcome is potentially catastrophic, as you can bleed out within a very short time. 

Normal protocol for an ectopic pregnancy is to treat with surgery if your hCG levels are over 3-5,000.  Mine were at 14,000.  But surgery itself was too risky.  It could result in too much bleeding, and potential loss of some or all of my uterus.  So again I was treated with methotrexate.  But this time I wasn’t allowed to go home.  The risk was too great, they said.  The 30-40 minutes drive between home and hospital could make the difference between life and death.  I had to stay in hospital until my levels dropped – normally this takes about a week.  I was not happy about this.  But they didn’t drop.  They doubled.  The doctors were worried.  They were concerned I might have a molar pregnancy or more aggressive trophoblastic disease, when the pregnancy cells go rogue, and can metastasize throughout the body.  I was assigned a gynaecological oncologist.  I had a chest x-ray and a CT scan.  It seemed to take forever to get the results.  Finally they came in.  I was clear. 

And after a week, my hCG levels plateaued, and I was sent home.  It took another week for my levels to begin to fall.  I felt as if I was getting out of the woods.  But the nightmare wasn’t quite over yet.  It took another five-six months, two more hospital procedures/surgeries, numerous visits to the wards and WHAU, blood tests, stress and tears, before I was given the all clear to try to conceive again.

Trying again after a loss

Trying to conceive again after a loss is quite different to trying before the loss.  Whilst I now knew I could conceive, I felt this tremendous urgency to do so  again quickly.   This change in emotions was extraordinary to me.  A few years earlier I had been ambivalent about having children, and here I was, desperate to do so.  Once again, I blame hormones.  They have a lot to answer for.  They turned me into someone I didn’t recognise.  Every month was a disappointment.  Every month felt like a failure.  Every month I was reminded of what others do so easily, and what I couldn't.  I still felt hope though - although I was stressed and increasingly desperate, deep down I still felt, still believed, that it would happen.  And it was hope that helped me through. 

I was 39; time was of the essence.  And so our quest became scientific.  The internet held a wealth of information.  I learned so much, and I realised how little most women know about their bodies, beyond the basics.  I like learning new things, and I was fascinated by it all.  It gave me a feeling of control, in an area where really, I had no control at all.  But it was stressful.  I couldn’t focus on much else. I felt my mind had been taken over by an alien.  It seems so strange to me now, nine years later, that I felt like that.  I can remember it, but don't let myself feel it anymore.  Time heals.  Perhaps hormones change too.  I look back, I remember, but it is as if I'm looking back on someone else's life.

The emotions of loss - Part 1

Prior to my positive pregnancy test, I had been rather relaxed about our inability to conceive.  I’d come close to tears only once, telling a friend in a cafe that we had in fact been trying but that it appeared it wouldn't happen. I’d been surprised when my eyes had unexpectedly filled with tears; whilst I felt ready to be a mother, I didn’t feel a desperate desire to be one. 

But all that changed after the ectopic.  I was stunned by the overwhelming strength of emotions I experienced.  I’d never experienced grief or loss before.  And it hit me with like a tonne of bricks.  I blame hormones of course.  But they weren’t solely responsible.

Of course, there were the inevitable comments.  But it wasn’t really a baby.  You didn’t have anything so you didn’t lose anything.  It was meant to be.  Stupid things like that.  But a cousin made me feel normal.  About my age, she’d had a miscarriage a few months earlier.  “From the moment you get that positive pregnancy test, it’s a baby,” she said.  She was right.  This is not an argument of when life begins.  Emotionally, for me, the pregnancy was welcome, and the outcome of the pregnancy, our baby-to-be, had been alive and well in our imaginations, keeping us awake at night, running around destroying things, smiling and giggling, making us laugh, making us worried, making us proud.  That is the child we had lost. 

In some ways the grief was helpful.  It made me feel that I knew we were doing the right thing, that I really did want children.  But the grief was subversive too.  it presented me with a new obsession.  Those in the infertility blogging world will understand that.  Others probably won’t.  Because I wouldn’t have understood it, couldn’t have understood it, until this happened to me.  Women who lose a pregnancy often feel an incredible urge to be pregnant again – as soon as possible, and whether or not they were actively trying to conceive.  I was no different.  I felt out of control.  I didn’t know myself.  I cried more in a week than I had in previous years.  Floodgates were opened that I’ve never been quite able to close again.  It’s a good thing I wasn’t allowed alcohol in those first five weeks until my blood tests were back to normal.

I might have started drinking and never stopped.

I seemed to see pregnant women or newborn babies everywhere.  It didn’t help that my changed Christmas plans meant I had to be around my sister-in-law and brother-in-law and their first baby.  For the first time, it was difficult seeing babies.  Before, it had never bothered me one way or another.  In fact, I’d never been someone who was interested in babies.  Toddlers, young children, teenagers I like.  Babies?  Meh! 

That changed.

There was fear too.  Would this happen again?  But I found the wonderful Ectopic Pregnancy Trust website, where they reassured us that most women go on to conceive again, and to conceive in the uterus.  This was just a blip.  I read that and felt reassured.  And in a few months, I was ready to try again.

Ectopic Awareness Raising – Part 1

I came to the world of infertility through an ectopic pregnancy.  Ectopic pregnancies*, or pregnancies outside the uterus, are relatively rare; 2-3% of all pregnancies are ectopic.  Diagnosis is not always easy.  Doctors often send women away, telling them they are having a miscarriage.  This is understandable, as miscarriage occurs in maybe 1 in every 3 pregnancies.  But because they don’t – as my GP says – maintain a high degree of suspicion when a woman of child-bearing age presents with pain or bleeding - women die.  Ectopic pregnancies grow, fallopian tubes (or worse) can’t stretch any more and rupture, and the mother bleeds out.  Ectopic pregnancies are dangerous, they kill.  Left untreated and growing the mother will die, and the pregnancy itself is never viable. Any increase in awareness is going to help save lives – and this is why I feel the need to talk about my experience.

My husband and I had been trying to conceive for about 18 months.  We weren’t doing it scientifically, I wasn’t tracking my cycle, and I was travelling a lot for work, reducing the opportunities for conception.  Then I returned from an overseas trip realising my period was late.  A positive pregnancy test was followed by shock (considerable), jubilation (muted but growing), and disbelief (when I began bleeding).  To keep this brief, it led to a diagnosis by my excellent GP of a potential ectopic pregnancy.  She didn't dismiss my bleeding - heavy though it had been - as a miscarriage.  She made sure, and ordered serial blood tests to see if my hormone levels were increasing or decreasing.  They were increasing, but not normally, and a subsequent scan confirmed an ectopic.   

I found myself in the women’s hospital on a warm, light December evening,  with Mr Bean’s Christmas playing annoyingly on the waiting room TV, waiting to be treated medically with a drug called methotrexate that is commonly used as chemotherapy.  I was asked to stay close to the hospital, going no further than 40 minutes away, given the risk of rupture.  So travel plans for Christmas (to family in the South Island) had to be cancelled, and as a result people had to be told.  For the first time Christmas was something to be endured, not enjoyed.

My treatment was uneventful.  My hCG (pregnancy hormone) levels were relatively low, at about 1000.  The methotrexate worked, and after seven days my levels started to drop.  It still took five weeks to get the all clear.  Five weeks of regular blood tests, of feeling as if there was a time bomb inside me.  Five weeks of grieving our lost baby at the same time that we felt relieved that I was alive and well. 

*  It would be remiss of me to try to raise awareness without directing you to the Ectopic Pregnancy Trust's website, the most reliable site on the web for information about ectopic pregnancy, and a personal lifeline for me in my time of need.

Our house

 I noted in my previous post that I haven’t child-proofed my house.  There’s no need – as I’ve said, the children in my life are all overseas, our up-country.  We live in a house on the side of a hill, no lawn, a building hazard of a deck that might be finished by the end of the century, four staircases, and hazardous chemicals within reach of the average toddler. 

When children visit, we might child-proof our house a little.  Anything precious that might get broken will be removed, or put above the reach of a toddler.  I remember when I was first married, just a young thing, and my sister came to visit with her daughter (the one who now has an eight year old!).  My sister grinned evilly as she walked around our new flat, picking up the occasional wedding present that was high on a shelf and saying “does this usually live here?”  She recognised I child-proofed the house.

A few years later, I was living in Thailand and friends visited with their one year old (he’s just turned 20 and is graduating university this year - argh!).  I’d been away on a business trip, and so returned the morning after they arrived.  I walked into our apartment and stopped, shocked! It looked as if burglars had visited, not good friends.  Turns out my husband had taken all the precious or breakable stuff, and our Persian rugs off the polished wood floors, and hidden them in the spare spare room. 

So yes, we child-proof our house sometimes – it’s only sensible!  But I also believe that parents need to take responsibility for their children when they’re in our house – it’s not our job to ensure that our house is child-proofed 100%.  I also believe that children understand that there are houses where they behave differently from the way they do at home.  Growing up I knew that.  And I’ve had remarkably few incidents in my un-child-proofed home, because I’ve seen the children behave themselves.  I’ve also seen fathers panic when I have put a full wine glass on the carpet, when a child is a few feet away.  He literally yelled at me to put it away.  The child was nowhere near.  Besides, I said, "she’s going to be careful, isn’t she?"  She nodded.  And she was.  I expected (and got) better from her than he did.

I did feel guilty however the day a friend and I had been chatting, wondered what the children were doing downstairs, and found one of the boys playing with the lighter I kept near the candles.  Fortunately, he couldn’t figure out how to work it.  So now, if there are small children visiting, I remove the lighter.