Thursday, 12 May 2016

And then this happened...

There I was, minding my own business, having accepted my infertility and moving on with my life, and this happened:

That was three weeks ago today. After one day of complete shock, and two days of joy, everything spiralled out of control. Because of my history and because I had been bleeding, blood tests and a scan were ordered. It was a holiday long weekend though, so I had to wait. It was the happiest I had been in a long time. I had two professional failures back to back just two weeks previous and I was in a funk. Infertility is such a deep personal failure, and I coped by throwing myself back into work, so failure there too really hits hard. The two little pink lines rescued me. 

I went to my scan with so much excitement. I'd even had visions of twins, given my age, so when the scan found nothing - really nothing - I felt crazy and embarrassed. No signs of pregnancy, those were the sonographer's words. In fact, to my untrained but IVF-savvy eye, it looked like my body was gearing up for ovulation as the calendar would have suggested. As I walked home, I thought the test was wrong. Of course the test was wrong, I have no functional tubes, how silly of me to think I could actually be pregnant. I'd had the blood draw in the morning, but my doctor wouldn't have the results for a few days.

That night, I woke up in pain. It started as just a burning sensation across my pelvis, but then it felt like my uterus was being wrung like a sponge. And I was bleeding again. Off I went to the hospital. Luckily it was quiet and when you say the word ectopic you are treated as seriously as a heart attack. Five hours later they let me go home. My hcg was lower than it should be and they were putting their money on a miscarriage, but because ectopic hadn't been ruled out, I was referred to the Early Pregnancy Assessment clinic for follow-up. It also became clear that potential ectopics aren't allowed to stray far from the hospital and if I didn't live so close to the hospital they would have kept me there for observation.

I returned for my follow up blood draw and appointment two days later. The results weren't good. I had not had a miscarriage (my number crunching over the previous two days suggested that my heavy bleeding two weeks earlier could not have been a miscarriage anyway, given the timing, my numbers never would have gotten high enough). Rather than doubling on schedule, I only had a 20% rise in hcg. All signs were pointing to ectopic. Next draw showed a 40% increase. So did the fourth, but before I could attend my appointment, I nearly blacked out at work and was rushed back to hospital. This time they kept me. I should have been seven weeks, but still no pregnancy could be located on scans. My hcg started to falter, dropping during the day and only showing a 10% rise over 48 hours. The decision was made to treat medically with a shot of methotrexate. I was sent home, but remained on high alert. Until my levels reach zero, the risk of rupture remains.

Barely 24 hours home, I started having pain. I thought it was just gas and I laid down. But it didn't improve. Four hours later it became intense and off I went for the third time to hospital. Again, I was admitted and stayed three nights. The first 24 hours I was fully prepped for surgery even more than I had been on my previous admission. I didn't eat for 36 hours. I had id tags on my wrist and ankle. I signed consent forms for surgery, my jewelry was removed or taped, and surgical stockings were brought to my bed. But no signs of rupture were found, so they let me eat, and monitored, and eventually everything settled down and they sent me home again.

It's still not over. I still have monitoring. Technically I'm miscarrying, but it's hard to grieve when your life is at risk. If it was just a miscarriage, I could just bleed at home, in my own bed, and distract myself with Netflix. Instead, I have to wonder if every cramp is normal or life-threatening. I had a few tears in the hospital. I also had a lot of panic and self-doubt. It's replaced the hope and joy. 

It's very surreal to dust off this old womb. I really thought that chapter of my life was over. But it's not. The hope is replaced with fear now, fear of another ectopic. I can't try again without that hanging over me. Trying to conceive consumed me completely for years. I had finally moved on. Now I'm dragged back and I don't know why my life has to be such torture. Nothing good came out of any of it. 

I wish I could end this on a more positive note.

Thursday, 19 March 2015

Stages of Infertility

It occurred to me today that an infertility diagnosis has some things in common with other more serious medical diagnoses. No, I won't die, but my hopes and dreams certainly got a terminal blow. Nearly 50 years ago, Elizabeth Kubler-Ross developed a theory of death and dying, describing the stages she observed in terminal patients. You might be familiar with these five stages. They are more commonly known as stages of grief, although they were never based on grief and grieving in general, but they work well, so long as you don't expect them to follow in strict sequence:

I still have a lot of denial. It's the shred of hope that my diagnosis was one of "err on the side of treatment" - meaning where I lived at the time, a bilateral blockage would get me approved for IVF and a unilateral blockage would leave me with nothing. I saw my tubal patency test live, I saw ambiguous spillage from one side, as did my OB who performed my test, so I was pretty shocked when she delivered the official diagnosis - the radiologist had signed off "no spillage". That was it, end of story, off you go for IVF. I still hold on to that denial. If I accepted it, then knowing I'm not going to have any further IVF rounds, I really should get rid of ALL the maternity items. But I can't seem to do that. Denial.

I have been angry at times with various people, particularly those I might hold responsible for the delay in diagnosis. Most of these are doctors, a system in which there is a 5-6 month wait to see an OBGYN, male GPs who don't know seem to know anything about reproduction or female anatomy, and of course my husband for wanting to wait. The simple reality though is that no one caught the infection, I delayed seeking treatment when I had pain, and I took a job and moved before I could get in to see another OBGYN about it. Then I spent 3 years living somewhere that the diagnosis wouldn't have mattered because IVF would not have been an option. The fact that we weren't really trying during those three years didn't matter, and when I moved again, at most it would have sped things up by six months. So not a lot of time is spent on Anger, but it pops up now and then.

I haven't done this recently, but I made all kinds of strange bargains, especially during the IVF cycles. Like when I committed to flossing my teeth every day, without fail, if it would work. And I did, every day, until the day it was officially a bust. It gives a sense of control, even if it's false.

Oh there are loads of days when the depression comes back. You have to be ready for them, before they suck you down that hole.

I'm not here yet. In Kubler-Ross' stages of dying theory, acceptance wasn't about giving up, but if you've been bargaining or trying things that won't work because you're in denial, then acceptance can be understood as simply that, you accept the reality of the situation, it is what it is. At some point I will have to accept that my tubes are useless, my uterus might even be a scarred mess, and my eggs are all old and stale and useless. But I'm back taking CoQ10 for my eggs, Chinese herbs for the one ambiguous tube, prenatal vitamins "just incase" and considering finding a new doctor for a more thorough investigation of my insides. Clearly I've looped back around to Denial.

Tuesday, 17 February 2015

Eastern Medicine

I had my first consult and began treatment - combination acupuncture and herbs. I didn't feel most of the needles at all (it's nothing after all the injections of IVF) and the herbs didn't taste nearly as awful as she made it sound (maybe she just says that so we aren't expecting a nice herbal tea). 

My expectations for clearing blockage are low, as I suspected, she said mucus plugs are readily targeted by herbs but scar tissue, especially given how old and bad mine likely is, is a long shot and I shouldn't expect much. However, since I went in with those same low expectations, I will be happy to just get my digestive and hormonal balance back, as these are areas Western medicine has failed me for years.  

Despite my low expectations, and rapid decent towards 40, I still don't quite feel ready to "let it all go" just yet. Having spent the better part of the past 6 years dreaming of another pregnancy, I can't just shut if off, but days go by now where I am more focused on other things. It does get a bit easier, and maybe by the time I'm 45 I'll be ready to let go of the maternity clothes and admit that I'll never wear them again. For now, I'm going to give Eastern medicine a go for a few months, and then maybe in June I'll revisit the idea of repeating my tubal patency test (horrible as it was, but this time I will request benzodiazapines to get me through it) or more invasive investigation or surgery to remove the scar tissue. Or maybe by June I'll be that much closer to moving on. After more than a year of saving every penny for IVF, I now have new goals for every penny I save, the enjoyable things I put on hold like travel. 

I think the key to moving on will be to rediscover and enjoy diaper-free freedoms.