Ellie’s story
Ellie writes about her experience of infertility, IVF and miscarriage and the effects on her mental health.
Not many people understand the stress and pain of infertility, IVF and miscarriage as a package - it's not something that's talked about.
We started trying in December 2016 and after what felt like an eternity we discovered we were pregnant in February 2018, just after we’d been referred for fertility testing. We were ecstatic, this was finally it, we were going to have our baby. Sadly, at 8 weeks I started to have some spotting and we had a scan booked at a private scan centre the next day. That was a truly awful experience. They told us that we had our dates wrong, I was actually only 5 weeks and 5 days pregnant but it was viable. They would not listen when I said my dates were not wrong. Upset and terrified we left and the next day had a scan at EPAU, who confirmed what we were expecting. It was a miscarriage.
What followed was the worst 2 weeks of my life. In a daze I returned to work. As the foetus had a very slow heartbeat still, there was nothing that could be done to speed it along. So I worked and hoped I wouldn’t miscarry until I was home. We had booked a UK week away and that was where I miscarried, in the bathroom of a holiday cottage whilst my husband sat downstairs worried and feeling helpless.
The miscarriage itself left me with PTSD. The EPAU had told me to expect a heavy period. What happened was more like something out of a horror movie. I had multiple huge clots as well as bleeding and I couldn’t leave the bathroom due to how heavy it was. One of the clots contained the remains of my baby and that image often still comes to me unexpectedly, it was awful to see. Looking back, I should have gone to A&E but at the time I just wanted to be left alone. The hospital had not offered any support after the miscarriage, I was given a leaflet on miscarriage and sent away – to walk past the antenatal clinic and the delivery suite on my way out.
For the next 10 months we tried again for a baby. I cried a lot, I had nightmares and flashbacks daily. I carried on working. I didn’t see friends or people with babies and I stopped going to places where I might see pregnant people or small children. Every time I went to the bathroom I thought I was bleeding. I wasn’t, it was the PTSD. Luckily I had EMDR (trauma therapy) which helped enormously and I started to get some of my life back by the summer of 2019.
Fed up with waiting, my husband and I paid for private fertility tests in November 2018. They came back with a low count for him and a low ovarian reserve for me. We were advised to go straight to IVF but my high FSH levels meant we didn’t qualify for NHS funding. So we embarked on self-funded IVF. Three cycles produced no blastocysts on day 5 and all failed. The huge shock on our 3rd failed cycle was finding out 2 weeks later that I was actually pregnant. 4 days later it was confirmed as ectopic and I was rushed into surgery as the doctor believed my tube was rupturing. They removed it. I was sent home in excruciating pain at 10.30pm the same day with no follow up. No-one even spoke to me about the loss or whether there was support I could access.
At this point my husband had a sperm DNA fragmentation test as we suspected this could be our blastocyst problem. It came back very high and we made the difficult decision to move to donor sperm for our 4th cycle. That cycle was a disaster. The embryo quality was poor and on day 5 we had a 3cc embryo (our first ever blastocyst) so were not hopeful. Just before Christmas 2019 we found out it had worked and we were pregnant. We were so happy! The next 3 weeks were the best we’d felt in years. We were content and feeling that all the pain had been worthwhile. Then at 7 weeks I woke up one morning and just felt different. Over the next few days the minimal pregnancy symptoms I had disappeared. I then started spotting. We went to a different EPAU this time, it was an awful experience. They scanned me quickly and said there was a heartbeat so it was all fine. With some pushing they measured the foetus, it was measuring at 6 weeks but I was 7.4 weeks. The nurse told me it was fine and to think positive. She dismissed all of my concerns and my previous history. We then had to wait 3 days for my scan at the IVF clinic which was booked for 8 weeks. This time I didn’t go into work and neither did my husband. We just sat there, in a silent house that we had bought 3 years ago in anticipation of starting our family.
The 8 week scan confirmed miscarriage. There was no heartbeat and no clear foetal pole to measure. Our baby had died sometime in the past few days. I write this the next day as I’m sat waiting for my second miscarriage and my 2nd loss within 4 months. I’m tired and I’m broken. This journey has been devastating. It has taken all of our savings, my fallopian tube and any joy out of life. I don’t expect the care with this miscarriage to be any different. I imagine I’ll get another leaflet when I have my next EPAU appointment.
But I know I’ll keep going, because I can’t bear the idea of a life without a child. I don’t think I can carry on with my own eggs, I don’t trust my body anymore. The NHS won’t offer any testing as I’ve not had 3 miscarriages – I may pay for Karyotyping to rule out issues with my chromosomes. We will have to consider embryo donation and the ethical implications that go with that.
Not many people understand the stress and pain of infertility, IVF and miscarriage as a package – it’s not something that’s talked about. So here I am, talking about it and I hope that my story can help others get tests quicker than we did or maybe just to feel that someone else gets the pain they’re going through.