Not many people know about the challenges of molar pregnancy

We started trying for our first child in 2016 but with irregular periods we knew it might be difficult. In early 2017, I started on clomid and got pregnant on my third cycle, but I had a miscarriage at 7 weeks. We were devastated and took a break from the clomid. To our disbelief, I fell pregnant about 6 weeks after my miscarriage. The pregnancy had some challenges and a difficult birth, but I now have a beautiful, inquisitive son who I’m grateful for every day. 

We were ready to add to our family

At the end of 2020, we felt ready to try for another, and I got a positive pregnancy test in January 2021. But a heart-breaking week followed with an early miscarriage. I never dreamed I would have 2 losses and, although I was only pregnant for a few days, it was hard to deal with. I tried not to hope, but I was secretly wishing I would get pregnant naturally soon after. Unfortunately, I was met with disappointment month after month. Our fertility doctor prescribed letrozole, a new drug for inducing ovulation. I was reluctant to start it, because I was still clinging on to the hope it could happen naturally. 

I eventually started it in July 2021, and it worked like a dream, on the first month. I didn't have any side effects; I ovulated, and I got pregnant. We were terrified and excited. We didn't want to talk about it too much but felt quietly reassured as I had awful morning sickness. 

An early scan showed something was wrong

We had an early scan when I was 9 weeks. For the first 5 minutes I kept thinking we would suddenly hear a little heartbeat, but there was nothing. We were told things didn't look good. It wasn’t clear what was wrong, but it was hard to see a fetus and there was no sign of a heartbeat. I burst into tears. I couldn’t believe something was going wrong again. My bloods were taken then we went home quietly, in disbelief. 2 days later, we were back for more blood tests and a long wait.

We were back and forth in our minds – is it too early for a heartbeat? Is it an ectopic pregnancy? Will I start bleeding? Why do I still feel so sick? We were told it was most likely a collapsed sac but would have to wait a week for another scan to confirm this.

I was sad, scared, and angry, and still feeling so poorly with morning sickness. Waiting for the scan meant we still had a tiny bit of hope and not wanting to let go of that was excruciating. The week passed. We were back in the same room again – dark, very quiet, waiting for the bad news. There was no change, the nurse said: “It's not viable.” We knew this would be the outcome, but the feeling of loss felt as fresh as the first scan. 

We were told it was a molar pregnancy

More bloods were taken, and a doctor told us it was a molar pregnancy. We asked why this hadn't been diagnosed sooner and she said that, in her 15 years as a consultant, she had only seen it 3 times. She said my sky-high HCG levels were a clear indication. There is risk of haemorrhage with molar pregnancy, so the surgery needed to happen as soon as possible. The doctor said I would be referred to one of the specialist centres and they would monitor my HCG levels to check they were coming down.

The doctor said there is a small chance the mole can turn cancerous and that if this happened, I would need chemotherapy. I was very scared and overwhelmed.  

It was so upsetting to go from thinking a little baby was growing inside me to knowing it was a mass of abnormal cells making me feel so ill. The surgery went well, though, and I was relieved once it was over. 5 days after, I started getting severe cramps every few minutes and bleeding heavily. I was scared, as no-one had explained what might happen in the days and weeks following. The only way to describe it was like having contractions. The cramping lasted 4 days, and I bled for over 2 weeks.

I had to see a specialist molar pregnancy team

A month after the surgery, I started the follow-up process with Charing Cross Hospital. With a complete molar pregnancy, which is the type I had, the follow-up is longer and more involved than with a partial molar. You need to have blood and urine samples taken every 2 weeks until your HCG levels return to normal. This took three months and another sudden bout of bleeding for me. 

The fortnightly testing was mentally challenging. My miscarriages were heart-breaking but, once the physical symptoms subsided, I started to recover mentally and felt ready to try again. With a molar pregnancy, there is a constant reminder and inability to move forward, as well as having to deal with the worry that at some point I might need chemo.

By Christmas, my HCG was finally in the normal range – we were so relieved. We’re currently in the 6 months follow-up stage, where I do a urine sample once a month. We can start to move forward now, but it still feels like a long time until we can start trying again. 

If we get the all-clear at the end of June, it will be exactly a year since the start of the molar pregnancy. We have no idea what will happen once we are able to try again but we are hopeful. I know I'll be very anxious if I manage to get pregnant again, but I want to try and enjoy it. 

There isn’t enough awareness of molar pregnancy

I'd never heard of molar pregnancy before and one of the hardest things has been not knowing anyone else who has been through it. I've found helpful information through Tommy’s during my miscarriages and I'm hoping this blog may be useful to others who find themselves in a similar position. There are lots of things which might have made this process less scary if I’d known them at the time. I really hope awareness of molar pregnancies will increase, and it will no longer be something that isn't known or talked about.