Robyn’s Infertility story
“I am so incredibly grateful that I have my daughter, but I will carry the harrowing experience of infertility forever.”
Just a low pain threshold
My story starts the same as most people with reproductive health issues: as soon as I hit puberty it was pretty obvious by how irregular and painful my periods were that something wasn’t right. When I was 13 my periods just stopped altogether and my mum took me to a gynaecologist. A scan showed a huge cyst on my ovary but we were told that this was normal and my next period would just ‘wash it away’. This consultant referred to my reproductive organs as my ‘marriage equipment’ and his diagnosis was that I had a lower pain threshold than normal. We went for a second opinion. The next consultant suspected I was anorexic and had caused my periods to stop by being underweight (I wasn’t). So, I was diagnosed with ‘dysmenorrhea’. No investigation into why my periods had stopped and no investigation into my ovarian cysts. I was put on the pill and stayed on it for the next twenty years.
‘There’s nothing you can do’
In my mid-thirties and unable to conceive, I found myself sitting in a consultant’s room listening to her declare, amazed, that there’s no way my blood tests were correct because they showed the results of a menopausal woman. After verifying with further tests that this was actually the case, I was told that my ovarian reserve was so reduced that it would be impossible for me to get pregnant without IVF. However, it was so low I wasn’t even eligible for IVF funded on the NHS. I asked what I could do to raise my AMH. She said ‘there’s nothing you can do’. So I left with nothing.
The first thing I felt as the news sunk in was a profound sense of isolation. It felt as if I had just been cast out, alone, into a great, big ocean. I had no idea what to do next. The best thing I did at this point was join an online support group. I wasn’t particularly active on this group and I didn’t engage in many one-to-one conversations but just seeing the updates coming in every day normalised the experience. I also learned a lot from the other women in the group and went into IVF with more knowledge and realistic expectations than I would have done without them. An infertility support group, whether in person or online, is a powerhouse of knowledge and strength.
IVF in lockdown
As it happened, my husband’s work had an IVF specialist in to talk about what they could offer on his business’s private health scheme, so he met with her to talk through my results. She agreed that we would have to do IVF but, by going private, we could go ahead without worrying about the criteria for eligibility. So, we went to start our first round of IVF. At my first scan, I only had four follicles so they weren’t very optimistic but they said it was worth a shot. I read the book ‘It starts with the egg’. We went tee-total, ate nuts and avocados, went for long walks, did everything that was recommended. I was a couple of days away from my first injection when it was suddenly all cancelled. It was February 2020 and it was the first lockdown.
We did our first two rounds of IVF in different lockdowns, so I went to all the appointments, the scans and the blood tests on my own. Matt had to stand outside on his own, sometimes wandering around in the sun, sometimes huddled in the snow and ice. Some appointments were for both of us so we would have to tag team, one alone in the clinic and one alone in the street. It didn’t help the sense of isolation.
We had to take self-isolating really seriously, even in addition to whatever country-wide covid guidelines were in place at the time, because either one of us catching it would mean the immediate cancellation of our round. No refund. No extra chances. The hardest decision I had to make during this time was to not attend my gran’s funeral. My sister held up her phone in the church so I could watch via video call.
The solitude of infertility
After two failed rounds, I was advised to get a hysteroscopy which, thankfully, Matt’s company could also cover on the health insurance (it wouldn’t have been available to me on the NHS). This time, my consultant was wonderful, he was obviously passionate and knowledgeable about reproductive health and he treated me with great respect and compassion. He removed a large polyp that would have, without doubt, prevented me from getting pregnant even if there wasn’t anything else wrong. After that, we went into our third round with donor eggs. This time, my odds of getting pregnant were much higher, our brilliant donor’s eggs were top-notch, my womb was well prepared (the polyp removal had added precious inches to that all-important lining), it was summer and it wasn’t lockdown, we could go to all our appointments as a couple. And yet it was by far my most difficult round. By this time, I felt so worn down by the emotional and physical strain, the loneliness, and just the headspace that it took up. The burden of always thinking about IVF, always reading about infertility, always feeling the physical effects of hormone treatments and operations, and doing it all with very little support and only slight hope. This round was unsuccessful as well.
In my everyday life, the solitude of infertility was a challenge. It was exacerbated by covid and lockdowns but covid wasn’t the main reason for my sense of isolation. I felt as if a lot of people avoided me or avoided mentioning their children to me. I felt an assumption had been made that I couldn’t bear to hear about children but nobody asked me if that was true. I was left feeling excluded, like not only could I not join the parent club but it also was now a closed door that I couldn’t even peek through.
A special surprise
I wanted to give up on IVF after our third failed round. I just felt so terribly done with the whole thing and one thing I noticed then was that there didn’t seem to be anywhere to go to give up. If anyone mentioned letting go to my online IVF group, they were met with a cacophony of support to keep going. Great for those who really want to keep going and need a bit of support to push through, but not so great for those who actually need to start to think about how to move on.
I decided to go to the initial consultation for our fourth round, as it was already paid for, and make a decision afterwards but, to my absolute shock and delight, a special surprise was found in my routine scan: it was the little heartbeat of my daughter who is now nearly two years old and the light of my life.
I will never know what was, and presumably is still wrong with me, and I will never know what conditions were met that allowed me to finally get pregnant. I am so incredibly grateful that I have my daughter but I will carry the harrowing experience of infertility forever. Even so, I wonder if I still belong to the infertility group now? I felt genuine joy from my IVF support friends when I got pregnant but I also felt how it stung their own wounds. I understand. When I was going through IVF, I absolutely hated to hear stories like mine. They did not make me feel better. Suddenly, the doors to parenthood were flung open and everyone was talking about their kids again, and also offering lots of very welcome support and advice. At the same time, the door to infertility was slammed shut. So now I feel a bit like I’m between two worlds and don’t really belong to either. But wherever I am, I’m still overjoyed that I had such a happy ending and I’m still processing the whole experience.
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