As mum to an almost-10-year-old, I never expected problems having another, and when we started trying to conceive it was only a couple of months before we had a positive pregnancy test – but I had none of the symptoms I’d had before, and just immediately felt like things weren’t right. An early scan at 6 weeks confirmed it: the baby had stopped growing.
Hearing that news was just horrendous, and I spent New Year’s Eve 2018 in hospital for miscarriage surgery. I’d spent a lot of time online researching the different treatment options, getting so scared by stories from people who had really painful and traumatic experiences that I chose to be put to sleep for the operation, which fortunately wasn’t as bad as I’d heard. Google isn’t always your friend but I found the information on Tommy’s website really helpful because it was honest without being negative; I wanted to know what to expect, but I didn’t want to make a decision based on fear.
Missed miscarriage and chemical pregnancy
Determined to keep going, in February 2019 we found out we were expecting. I was anxious because again I had no nausea or sore boobs or pregnancy symptoms at all. The GP referred me for a scan at 6 weeks, hoping to put my concerns at rest, but the EPU said we’d have to wait until 8.
I was in floods of tears because I knew it wasn’t right; it’s so frustrating to be told “I’m sure it’s fine” as if you don’t know your body, and I just knew something was wrong.
We booked a private scan, because I couldn’t bear to wait, but the sonographer couldn’t find anything to show us. 2 weeks later we went for the NHS scan and again saw nothing, no fetal pole, no baby. It was difficult to take in really, people tell you how common miscarriage is, but I just couldn’t believe this would happen again; it all felt so unfair.
By the time summer rolled around, we had a positive pregnancy test once more, but within a few days I started bleeding and it was all over. It was a good few months before I felt strong enough to try again, but we got there together, and as Christmas approached we found ourselves looking at those two pink lines for a fourth time – but sadly it was another chemical pregnancy.
Trying to conceive and recurrent miscarriage
In January 2020, I had my first appointment at Tommy’s Recurrent Miscarriage Clinic. I’d asked my GP to refer me after my third loss, but up until then it had always been dismissed as “one of those things”. The Tommy’s team is different; they take the time to talk and explain things properly, but they also really listen, so you feel like they’re going through it with you and they genuinely care.
Meeting the Tommy’s team was the first time I felt like a person instead of a patient.
When the UK was going into lockdown in March, I had the added anxiety of being newly pregnant to deal with! You can’t really relax and enjoy pregnancy after loss, but I had nausea and sore boobs and other symptoms that meant I was less worried this time, and being under the care of the Tommy’s team made me feel more comfortable as I was confident that I’d be well looked after.
Covid-19 impact on miscarriage care and support
At my 6-week scan, the baby was measuring small, and we thought maybe there’d been a mistake with my dates. By 8 weeks, my symptoms had stopped, and I just had that feeling again: it’s over. Coronavirus restrictions on hospitals meant I was alone for the scan that confirmed my worst fears. I could still see our little one, but they weren’t growing anymore, and there was no heartbeat.
The pandemic also meant I couldn’t have treatment under general anaesthetic, so I was awake for the miscarriage operation which was very unpleasant – and unfortunately it didn’t work the first time, so I ended up going back and forth to hospital from April until June for more surgical and medical intervention. It helped that I knew the staff, and they were amazingly supportive, but those months in hospital alone were awful.
You might expect lockdown to make grieving baby loss even harder as we’re in isolation, but mentally I handled that miscarriage a lot better than my other losses, thanks to the kindness of the care team in Coventry and the support networks I’ve found online.
I’m very open about my miscarriages, and maybe that makes some people uncomfortable, but it’s part of me.
I share my experiences on social media and try to break the taboo around miscarriage, yet still I feel a bit embarrassed every time it happens to me, like maybe I shouldn’t keep trying when that means opening myself up to the risk of going through it again. People urge you to rest, “it’ll happen when you stop trying”, which is frustrating because I feel ready and surely it should be my choice.
The Tommy’s baby loss support group has been great as we all understand, whereas if you haven’t been through it you may not know what to say; before going through it myself, I naively assumed some things people have said that upset me, like “it’s your body protecting you from a pregnancy that wouldn’t make it”. After genetic testing for my last loss found everything was normal, I know all too well now the reasons for miscarriage are just not that simple. From that testing, we also found out the gender - a little girl - which was a big thing for us.
Miscarriage tests and treatments
When I came to the Tommy’s clinic, they ran lots of tests but restrictions on surgery due to Covid meant I couldn’t have a biopsy until later in the year. In the meantime, I got to know Professor Siobhan Quenby and her team with lots of phone calls, and everyone is so passionate and positive that it filled me with hope I hadn’t dared to have before. Professor Quenby is one of the best, so having her on your side is really uplifting.
Things had felt hopeless – but Professor Quenby thinks she knows what the problem is, and that means she can try to solve it.
Once I could get my tissue tested, the results came back very quickly, diagnosing me with chronic endometritis. We didn’t know if it was causing the losses, but it gave us something to go on – so I was relieved in a way, because after years of heartache and confusion we finally had some idea of what was happening. At last, we’re getting somewhere.
I signed up to be part of the CERM trial at Tommy’s National Centre for Miscarriage Research, which looked at whether an antibiotic called doxycycline can improve the balance of bacteria in the womb lining; it’s often used to treat endometritis, and researchers think the condition may be linked to recurrent miscarriage because its effect on the womb lining could make it harder to hold onto a pregnancy. I had to take tablets every day for a fortnight and then go back for another biopsy.
Now I’m waiting for some other test results about natural killer cells and plan to try progesterone treatment to reduce miscarriage risk when I’m pregnant again. As the trial is running for another year or so, we don’t know the results yet, but just taking part has been such a boost – it feels like we’re trying to conceive for the first time, and we’re excited again where we were anxious and exhausted before. You over-analyse blatantly negative pregnancy tests trying to find that second line, and if you get a positive result you constantly take more just to check.
After multiple miscarriages, I can’t imagine what it must be like to relax in a pregnancy, but with the Tommy’s team looking after us I genuinely believe we’ll get there.