APS Awareness Month: “I will have to learn how to manage this condition for the rest of my life. But with my diagnosis, comes hope.”

After 18 months of trying to conceive, I was told I had “unexplained infertility”. It was a diagnosis that felt both unfair and unhelpful. How could something so life‑changing be described as “unexplained”?

The initial tests my husband and I had taken came back as normal. The tests undertaken by our GP included an AMH blood test and a sperm test, as well as a general look at both of our medical histories and lifestyle choices. I was upset and frustrated at repeatedly being told “just relax”, “try and reduce stress”, and “have you tried…?” The GP then referred me to a fertility nurse at my local hospital. While in her care, I had a HyCoSy (Hysterosalpingo-Contrast Sonography) to investigate whether my fallopian tubes were blocked and causing difficulties with conceiving. The test was clear.

I’ve worked on women’s health advocacy for most of my career and I have heard countless, heartbreaking fertility and maternity stories from women, but I found it difficult to accept my diagnosis. I believe that nothing is “unexplained” – it is “not yet found” or “not yet known”.

However, we still decided to give IVF a go. After our first frozen embryo transfer (FET) failed and the second transfer ended in a chemical miscarriage, I began to wonder what my “unexplained infertility” could be. Before we undertook a third transfer, I asked my consultant if there were any tests that may explain what was preventing the successful implantation of my precious embryos.

My consultant offered me a blood test. The test (mini thrombophilia) was simple. It looked for inherited and acquired conditions that increase the risk of blood clots.

The tests showed I had antiphospholipid syndrome (APS), often called “sticky blood”. When I received my diagnosis, I frantically googled the condition to learn more and I found that it can cause a variety of complications, including challenges with implantation, miscarriages and other pregnancy problems. I also found out that it is considered a rare autoimmune disorder, often affecting roughly 1 in 2,000 people in the UK. A lot of women are unaware that they have the condition and only find out during fertility investigations or when they’re pregnant.

At first, I found the information I was coming across overwhelming and frightening. APS is not treatable. It is something I will have to learn how to manage for the rest of my life. However, with my diagnosis, came hope, especially as my fertility journey continues. According to APS Support UK, some women with the condition can have successful pregnancies without any treatment. Others, myself included, have been given blood thinners in the form of injections. I have had the injections throughout my IVF journey and it is highly likely that I will have to take them in any future pregnancies.

As scary as it may sound, the injections do improve the manageability of the condition, so a live birth might be possible for me in the future. I don’t particularly enjoy taking injections as part of my fertility journey, but I’ve gotten used to them pretty quickly, which has been surprising. To support me further along the way, my GP referred me to a haematologist, who will help me manage my APS in my everyday life – not just as part of my fertility journey.

Although I am still waiting for two blue lines on a pregnancy test, one part of my unexplained infertility puzzle has been pieced together, and this gives me hope.

About the author:

Zoe is a healthcare policy professional and patient advocate. She and her husband Simon have just undertaken a second egg collection after four years of infertility, IVF treatment, and early pregnancy loss, a journey they continue with renewed hope following her APS diagnosis. Zoe continues to advocate for more research into women’s health and fertility issues as a member of the HFEA’s Patient Engagement Forum and The Fertility Alliance’s People Panel.