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Fatima's Story

My partner and I started trying for a baby in the winter of 2021. Prior to this, I had been taking folic acid for 3 months and had been tracking my cycles for about a year. I remember feeling a mixture of excitement and nerves: even though I knew that PCD is associated with subfertility, I was just keeping my fingers crossed that I was in the 40-50% of women who naturally conceive.

The first thing I did was tell my PCD team that me and my partner were planning to start trying for a family. I told them this during my annual review and the consultant made a note of it and went through all my medication to make sure they were safe for use during pregnancy. This was important, and I’d recommend it to anyone who has PCD and is planning to start trying in the next year. It turned out that my daily antibiotic would have been very harmful to a pregnancy, so they changed that and a few other medications. They didn’t send me for any fertility tests (apparently this isn’t as easy in women), they just told me to try for a year and if there were problems down the line, they could refer me to a specialist.

After 6 months of trying without any luck, I started getting a bit worried. The NHS say that most couples take a year to conceive, so I focused on optimising my nutrition, keeping a healthy weight, and making sure I was exercising regularly. I still had the odd take-away and I drank alcohol socially but outside of the occasional ‘treat days’, I really enjoyed focusing on improving my health. I noticed these improvements too: my cycles had been a bit irregular (anything from 28 to 40 days) but they settled quite quickly. I was focusing on doing my physio regularly too, and my lung function improved. I had fewer infections overall and cutting down my caffeine meant I was sleeping better too!

A year went by and still no joy. The PCD team said they couldn’t refer me to a fertility specialist and to go via my GP. This frustrated me! We booked an appointment with the GP and explained how PCD can cause subfertility. Nine tests and six months later, we finally got our first IVF clinic appointment.

IVF was gruelling but we felt fortunate to be eligible. As you’d expect, PCD always throws spanners in the works: it wasn’t considered safe to have egg collection under sedation in a clinic, so I had to be booked into an operating theatre. The collection process was painful, but it all went smoothly, and we ended up with 5 viable embryos. They implanted one and froze the rest. The ‘two week wait’ was probably the worst part of the whole ordeal: you can’t take a pregnancy test until two weeks have passed since your embryo transfer. I suspected it hadn’t worked when some of my symptoms started subsiding and the day 14 test confirmed our worst fears. We were devastated.

We spoke to the IVF team, who were really reassuring. They said I’d need to have a proper period and thankfully, because our funding covered up to 3 cycles on the NHS, we would be able to have a Frozen Embryo Transfer (FET) two months later. We were all booked in for the appointment and just waiting for my period to start so that we could start our next round. I’d had my flu and covid vaccines around the time my period was due and so I thought maybe they had messed up my cycle a bit. Just as a precaution, I took a pregnancy test and couldn’t believe my eyes: two lines! I am now 7-8 weeks pregnant (having conceived naturally) and although it’s early days and I’m under no illusion that it might all go wrong; it has at least given me some hope that we will one day have a family, regardless of how we get there.


- names have been changed to protect the identity of the writer