Jayde’s molar pregnancy story
After experiencing a number of miscarriages, Jayde had a molar pregnancy, which she talks about here.
I had never heard of a molar pregnancy... I felt fear and a dark loneliness like I had never experienced before.
Having experienced a number of miscarriages and a molar pregnancy I know how lonely it can be and often we grieve the loss alone. Molar pregnancy can be a particularly lonely experience because so many people have never heard of it, so I’m sharing my experience of molar pregnancy here in the hope that it will help others.
The miscarriages I had experienced previous to the molar pregnancy had come away naturally, I had scans to confirm that they were complete. This time it was different.
I’d had a booking appointment with the midwife and due to my past history, she referred me to the early pregnancy unit. I had a scan and was told there was only a sac and asked whether my dates were correct.
The next week felt like a lifetime. I had to have the HCG (pregnancy hormone) in my blood tested every 48 hours and another scan a week after to confirm that the pregnancy wasn’t viable. The blood tests showed how my HCG levels were still rising. I was presenting as a bit of a mystery.
A week later I had my next scan. There had been some growth of the sac, but no baby. The doctor came and told me that they were querying a molar pregnancy. I had never heard of a molar pregnancy. I was handed lots of leaflets and advised I would need surgical management of the pregnancy so the tissues could be sent for testing to see if it was a molar pregnancy, and that I would be given the results within 10 days.
I went home and waited for the results. I experienced some heavy bleeding and contacted the GP. The GP advised they had received the outcome of the tissue test and that they have confirmed a complete molar pregnancy. I was shocked. She also stated how she didn’t know much about molar pregnancies other than the rarity.
I couldn’t comprehend what had been said. No one seemed to know anything about what was happening to me. I felt fear and a dark loneliness like I had never experienced before.
A few days later I received the letter confirming my next appointment and how it would be a phone consultation due to Covid 19.
The information provided from the specialist advised there are two main kinds of molar pregnancy – a partial mole and a complete mole. I had a complete mole. Molar pregnancies have to be followed up in specialist centres because in rare cases, they can develop into a kind of cancer.
There are just three specialist follow-up centres in the UK and I was under the care of the one in Sheffield, where the specialist nurse was really knowledgeable and explained how the oversight of my care would go. I spoke to her about my concerns – I was still bleeding, I still had sore breasts, I felt hormonal and emotional. She said it was normal in the world of molar pregnancies and that things can take longer for the pregnancy hormones and symptoms to go. She also told me “We don’t know why it happens, unfortunately you have been really unlucky”.
She explained that after my consultant appointment, I should receive an information pack in the post with test pots for my urine. I would be asked to send urine samples fortnightly. This would check whether the HCG (pregnancy hormone) levels were dropping, staying the same or rising. I would also have my blood tested when requested. I’d be contacted after each test to advise of the result. 8 weeks after the miscarriage management surgery, should the HCG rise or stay the same (rather than drop) I would be asked to visit Sheffield for further tests.
I asked about future pregnancies. She stated that they advise strictly against it whilst still in follow-up. With a complete molar pregnancy, as mine was, they recommend waiting at least 6 months after the HCG levels return to normal.
My husband and I tried to stay positive. We talked lots about the ifs and the buts. It was a very testing time, I’m not going to paint it like it had been anything else.
Every fortnight I awaited my sample pot, sent it back and then awaited the phone call giving me the results. I was very lucky that my HCG returned to normal within about 8 weeks, I didn’t require any further treatment or testing as the HCG returned to normal, but continued to send fortnightly urine samples for 3 months until I fell pregnant. I was then asked to send a urine sample 6 weeks after the birth.
I fell pregnant following the molar pregnancy and have had a healthy little boy. The pregnancy was very anxiety provoking but I’m so glad we didn’t give up.
I hope by writing this it may help other women in my situation, who may stumble across my story and by reading it brings them comfort in knowing they are not alone in the rare world of molar pregnancies.
To read more of Jayde’s story: https://breakingthesilenceofmiscarriage.wordpress.com
For more information about molar pregnancies: https://www.miscarriageassociation.org.uk/information/molar-pregnancy/