One person’s experience of recurrent miscarriage: Part 1

CW: this entire post is about fertility issues and recurrent miscarriage. If these are sensitive topics for you, the details may be distressing.

My heart is heavy for Britney Spears, who announced a miscarriage over the weekend. I can’t pretend to relate to her circumstances, but it feels like a good opportunity to share my story. Something she said particularly resonated with me: “Perhaps we should have waited until we were further along, but we were excited to share the good news.”

I think people should share when they feel comfortable, and the concept of hiding miscarriage behind closed doors should end, for the mental health of the parents and for those who might go on to experience it themselves someday.

Miscarriage, especially in the first trimester, is common, but that doesn’t make it easier to deal with when you’d waited for that positive test. Knowledge is power. So with that, I will share: I had multiple early (first trimester) miscarriages. It is worrying and confusing, as well as physically and mentally stressful. I’m sharing so those who might have experienced it or go on to experience it feel less isolated and know there is someone willing to talk or listen.

After trying for a while, we were thrilled to have a very clear positive test in March 2020. Yes, *that* March 2020 – a week or so before the world ground to a halt. We were aware of the ‘keep it secret until 12 weeks’ norm but a few folk had known we were trying so I did share with two relatives and that one work friend where nothing is withheld, even the weirdest and most bizarre of bodily functions. I gave the usual caveat: ‘we only just got a positive test! It’s early so keep it quiet!’ But early miscarriages happen to *others*, not me. Past me, that sweet summer child! I had no idea this would start a 2.5-year saga.

***A sidebar: my cycle woes***

I have irregular cycles (anywhere from 30 to 50 days, often veering from one extreme to the next) so knowing when to test was tricky, but I’d been experiencing symptoms for about two weeks. I might have tested sooner had I known it was normal to *not* have morning sickness, as that was the symptom I’d waited for: that stereotypical moment you see on tv where the woman wakes up and runs to the toilet. That moment never came, and it never would. Across all my pregnancies, I only had a few instances of mild queasiness, often in the middle of the night or before bed. Genetics and racial background can play a part in which symptoms you experience, but often it varies from one pregnancy to the next.

Given my irregular cycles, it was impossible to accurately date any of my pregnancies. I might technically be 8-9 weeks when in reality it could be 6-7. The variable part of the cycle is most often the pre-ovulation part, ie the pre-conception part, but pregnancies are first dated from the start of your cycle, ie including the part where you’re not even pregnant yet. So if my pregnancy was dated at 9 weeks, it could developmentally be 7 weeks, or 6, or 9 after all! It doesn’t seem like much of a difference, but at 4-6 weeks, the risk of miscarriage can be a third or higher, whereas at 7 weeks that reduces to 10%, and beyond that it decreases drastically each week. In other words, and as came to learn, those early weeks are vital milestones. All of my pregnant cycles, barring my current one, probably failed around the 6-8 week area, even though those actual cycles ranged from 6-10 weeks. 

Anyway, back to the story:

Miscarriage 1

My first miscarriage was in that first week of complete and total lockdown, dealing with the EPU (Early Pregnancy Unit) over the phone and not being able to go in because no one was going anywhere. It was a shock – feeling the wildly heightened sense of smell, mild cramps, heartburn, and extremely sore breasts only to then go to the loo and find blood. Lots of blood. My frantic first phone call to the EPU was played down as possible implantation bleeding, but (and I suppose I should be grateful it was this clearcut) I was able to definitively say it was too much. There were clots and clumps. The material of that early pregnancy was evacuating my uterus like someone had pulled the fire alarm.

In my mind, I knew it was common. It was early. It wasn’t a big deal. But it was a big deal. I was upset. I called the midwife unit and cancelled the scans they’d booked me for. I threw away the baby pamphlets and materials they’d posted me. I bled fairly heavily for two days (my heavy periods made it not that unusual or traumatic to deal with) then that was it. All gone! As if it never happened. But it *had* happened.

Oh well, try again! These things happen, after all, and it just so happened to be me. We were shaken but not overly concerned. Research proves you are statistically *more* likely to have a complication-free pregnancy and live birth after a miscarriage. My body did a trial run and now it’s geared up for the main event. Everything would be fine.

But it wasn’t. A few months later, I was pregnant again. Huzzah! I went in with tempered enthusiasm, given I’d already had one failed attempt, but I couldn’t help feeling optimistic. As I said, research shows you’re more likely to have everything go well the second time around. I started getting symptoms, I told the same close relatives, and started trying to figure out how far along I really was so I could start counting down the weeks until I was in the clear. 

Miscarriage 2

About a week and a half later, my symptoms faded. Normal, says the internet! Symptoms come and go, says mumsnet! Don’t worry, says the doctor! But, deep in my bones, I *was* worried. Loss of symptoms can be normal, yes, but they can also mean a pregnancy is ending. The first miscarriage, I had intense pregnancy symptoms up until the literal hour I started bleeding, but new pregnancy, new roulette of how things play out.

It was still lockdown-ish and the EPU wouldn’t see anyone for scans or treatment unless it was an emergency, so I had to wait. A few days after the symptoms faded, I started bleeding. ‘Whelp, here we go again,’ I thought. At least it wasn’t a shock this time. At least I was prepared and braced for it. At least I was ready for the possibility – more than when early miscarriage had been a distant thing that happened to others. I cancelled more midwife appointments and scans. I binned another set of baby literature.

This one wasn’t as smooth.

I had a lot of pain, and it was one-sided. Anyone who knows about women’s bodies knows that reproductive-organ pain that is one-sided is usually a bad thing. I couldn’t sleep, I felt so sick. I phoned the EPU and they walked me through more things to look out for. Because of COVID, they couldn’t bring anyone to hospital unless it was a clear emergency (ie going into shock or similar). Great. Again, anyone who knows about women’s bodies knows that ‘clear emergencies’ are about as easy to spot as a needle in a haystack. Reproductive complications go unnoticed all the time, with disastrous consequences, because of that tricky combo of women being accustomed to putting up with pain and doctors being unsympathetic or ignorant of women’s issues.

So, at 2am, I played the ‘is it normal pain or ectopic pregnancy pain’ game for a few hours, constantly waiting to see if things would cross the ‘emergency’ line. I called in sick from work the next day. Since I’d just come back from some time off and worried it might look bad to call in sick the first day back, I shared why: I was miscarrying. While I worked through the first one (it mostly happened over a weekend), this one kept me up an entire night, leaving me sleep-deprived and physically exhausted. Now, senior management at work knew. Better than them thinking I’d been irresponsible on my time off and gotten sick somehow. I bled for about a week, then that was it. All gone! As if it never happened. 

But it *had* happened. 

A potential further miscarriage

In late 2019, about six months after we started trying, I’d had a particularly horrific period after a long cycle, where I’d had to lay down and not move for hours. I remember even debating whether to call the hospital in case something had gone horribly wrong. In 2020, after two miscarriages, I was seeing a pattern. I could have had three losses already, but I couldn’t prove that 2019 episode was a miscarriage as I’d never taken a pregnancy test (because of the irregular cycles, I’d been waiting on that mythical morning sickness as a sign to test).

Well, statistically we were STILL more likely to have a smooth, complication-free pregnancy with the next one, but things started getting alarming. One miscarriage = normal. Two in a row = probably fine. Three = not good. A small number of people suffered ‘recurrent miscarriage’. If the 2019 episode was a miscarriage, I could already be in that group. But don’t think about that, I told myself. 

Miscarriage 3 (or 4)

So, bring on round 3. It was now a year and a half since we’d started trying, so we didn’t want to wait. I was getting blood tests to check hormone levels etc. I thought physically I was ok, since they were early. A miscarriage at 7 weeks might be a bit distressing, but I figured it’d be less physically traumatic than, say, a miscarriage at 10 weeks, or 13 weeks, or 16 weeks. I was good to go.

I ended up pregnant the very next cycle. This time, I was a ball of nerves. I checked for spotting multiple times an hour. I overanalyzed every symptom and whether it was coming or going. I didn’t call the midwife unit because I didn’t want more scans and appointments that would need to be cancelled. That pregnancy was the earliest one to end, at probably 5-6 weeks. In theory, that should make it the easiest physically. 

It was not.

I’m used to heavy, painful periods. This one, despite being the earliest, was the heaviest I’d ever bled in my life. It started around 8pm and I couldn’t sleep the night, so I sequestered myself in the small bedroom, having a quiet meltdown. I was bleeding more than I thought possible, but the lack of immense pain from the last miscarriage (still fresh in my mind) kept me from phoning anywhere. But, most alarmingly, I started experiencing symptoms of psychosis.

I won’t go into detail, but it was a full-on disconnect, out of body experience. Mentally, I was conscious and frenzied, but I was not in control of my body. It was frightening enough that in my current pregnancy I alerted my midwife to the fact it had happened, since pregnancy-related psychosis both during pregnancy and after birth are complications I might be more predisposed to now that I have experienced it once. I’d read about women that ended up in asylums after birth, having complete personality changes and debilitating mental health problems. Whatever I could do to avoid such an outcome, I would do it.

I bled heavily for twelve hours then had faint spotting for ten days. It was the most bizarre ‘period’ I’d ever had. That 12-hour stint overnight was one of the most unsettling experiences of my life. But worse, I was now firmly in the ‘recurrent miscarriage’ camp. Those in that small, select group could be *more* likely to have more miscarriages. The odds had flipped. I was referred to the Recurrent Miscarriage Clinic and, on 23 December 2020, had my appointment. Can’t beat some heavy conversations, two rounds of blood tests and a troublesome vein right before Christmas!

Diagnosis of unexplained recurrent miscarriage

I got results in February 2021. I didn’t have blood clotting issues or other potential problems, so they put it down to unexplained. They said if I became pregnant again then they’d place me on progesterone. Apparently, progesterone can help women maintain pregnancies, but only where they’ve had unexplained recurrent early pregnancy loss. None of my hormone profiles showed issues in that department, but the range of ’normal’ the doctors use is quite wide. That, coupled with my irregular cycles, could easily make it difficult to pin down whether my body was producing the right levels of hormones at the right points in my cycles.

As you can imagine, the above wasn’t particularly reassuring. ‘We don’t know what the issue is, so we’ll try this thing that works sometimes’. Well, not much choice then.
After the October 2020 psychosis-riddled miscarriage, I needed a break. Perhaps having the two miscarriages back to back threw my body for such a loop that it was struggling to recover. So November and December were break periods, while the new year brought new determination to try again.

No ‘where’s the baby’ jokes, please

By this point, we’d had enough ‘haha when are you guys having kids’ jokes from well-intentioned friends that we shared with a few that we were INDEED trying and things weren’t going so smoothly. It was also at the point where I personally couldnt keep it to myself any longer. If you’re taking daily pills, focusing on diet, and shoving a temperature probe up your vagina each night to pinpoint exact ovulation, fertility becomes an ever-present issue in your mind.

Please, if you take away one thing from this unacceptably-long essay, let it be to not make these baby jokes to couples. You have no idea what stage they are in their family-planning journey. One half could be desperate to start while the other wants to wait, or they could both be happy to be child-free for a while longer, or they could, like us, have been trying for almost two years with nothing but a string of miscarriages to show for it. It could be a topic of contention or suffering for those involved. If you genuinely want to start a conversation, and you feel close enough to the couple to do so, I recommend something more engaging, like ‘You have been together for a while now. Are you thinking about kids’ or something similar. That is a conversation starter, not a quickfire joke. It opens the door for someone to share or not share where they are in that journey. Five years ago, I’d have said ‘We’re young and I’m enjoying my child-free years’, whereas a year ago I’d have said ‘We’re actually struggling and it’s been quite difficult’. When you’re trying, every period is a disappointment.

At one point, a total stranger asked me how far along I was. It was a full year after my previous miscarriage and I’d gotten another disappointing period instead of a positive test, so I was particularly bloated. I laughed at her and said I was just fat. It was a dampener on what was otherwise a needed break from the stresses of work and fertility woes.

Possible infertility or decreasing fertility

We reached the two-year mark in mid 2021. At that point, the NHS will let you see a fertility clinic. But we weren’t technically infertile. We’d conceived many times. But in autumn 2021 we’d gone a full year with no conceptions, so the doctors were ready to investigate. November 2021 we had an appointment with the Infertility Clinic. I had the pleasure of a surprise internal ultrasound. That’s when they shove a stick up your vagina and wrangle it about to get a clear image of the reproductive organs. They found two big bunches of grapes – final confirmation of my polycystic ovaries (irregular cycles, painful periods and misleading ovulation predictor kits are pretty good indicators of polycystic ovaries).

They didn’t find much as to the reason why we weren’t conceiving, so that was put down to ‘unexplained’, just like the miscarriages. Unfortunately, it’s common for infertility to be unexplained. Probably something to do with the lack of widespread studies on all the weird and wonderful things that happen with those organs and how variable they can be. Anyway, they decided they’d schedule me for a rather invasive test to see whether my tubes were blocked, and in a year’s time we’d be put through IVF. They wanted to give things another year because odds with IVF vs odds with natural conception at our age and with our history were more or less the same, so IVF would be better once we were a year older without success.

That was depressing news. I didn’t want IVF. I’d have done it if necessary, but it is a long slog and we had no idea whether the recurrent miscarriage would wreck that as well. Major respect to those who undergo the process. I also really didn’t want the test for tube blockages, mainly because a Pap smear is torturous enough already so the idea of a tube getting shoved through my cervix and into my uterus while I’m expected to act like it’s no big deal seems like the seventh circle of hell.

Polycystic Ovaries

I resolved to see if there was something I could do about the one new piece of information I had: polycystic ovaries. I did two weeks of nonstop research, figuring out what I could do to improve my chances of conception through lifestyle changes. I already ate healthily but I also ate sugar and grease: foods that contribute to inflammation and exacerbate polycystic ovary syndrome. So I cut out all sugar (including natural alternatives like agave/honey/etc), all white carbs (pasta, white rice, non-wholemeal bread, etc), drastically reduced my gluten intake, and, the surprisingly difficult one, all seed and vegetable oils (which are in everything).

When I mean cut out, I mean completely. I looked at every ingredient label. If rapeseed oil, palm oil, sugar, any kind of syrup, things like that were on the list, I did not eat it. If you thought my journey to date was depressing, imagine cutting out chocolate and ice cream and pizza to boot. I lived off pasta made of lentils, chickpeas, or buckwheat, ate organic oatcakes, tried spelt bread, and snacked on things like red bell peppers or carrots. I made lots of soups. I had no nice snacks.

Christmas 2021 came and went, where I stuck to my diet probably 95% of the time despite telling myself I wouldn’t be too much of a stickler about it over the holidays. I got a new job offer and submitted my notice. We casually saw a cool-looking house for sale and thought we might as well see it. After all, we weren’t going to be spending a fortune on a baby anytime soon (if ever).

2022: A New Hope

I joked that, as 222 was my favorite number, 2022 would be my year. I’d start a new job in March, I planned to finish my next book and maybe get a literary agent, and we put in an offer on that house and had it accepted. Things were looking up, baby or no.

I got my COVID booster in early January, right at the tail end of my period. This was deliberate for each of my vaccines as I didn’t want any side effects (I had high fever with both) to jeopardize a conception, delay ovulation, or pose any kind of complication to what already felt like a complication-riddled fertility situation. For those who might be concerned about COVID vaccines and fertility, I conceived *that same cycle*.

At the end of January 2022, two days after we agreed to buy a big crazy house and one month before I was due to start my new job, I got my first positive pregnancy test in fifteen months. 

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