Treatment add-ons: “A chat over coffee changed my life”

One friend, who’d had multiple cycles with treatment add-ons before having her child, took me for coffee and said something that lodged very deeply: ‘perhaps it’s time to take a more proactive approach?’

I had never expected to find myself in the world of IVF treatment add-ons.

After being diagnosed with POI (Primary Ovarian Insufficiency) in my early 30s, I knew I would need IVF, but had assumed that we would have a standard cycle at our local NHS clinic. What I totally underestimated when we were starting out was the desperation we would feel after our first NHS DE (donor egg) cycle, with eggs donated by my sister, failed.

It had been a long, difficult road to treatment, and the failure of our first transfer - a textbook cycle - was a shock. At our debrief, the consultant said glumly that yes, he too had expected it to work.

One friend, who’d had multiple cycles with treatment add-ons before having her child, took me for coffee and said something that lodged very deeply: ‘perhaps it’s time to take a more proactive approach?’ Online, I read stories about people having success after years of failure following new tests, new treatments, that the NHS didn’t offer. We decided to go for it, and moved to a private clinic that offered add-ons.

The clinic suggested I had a hysteroscopy (under sedation), intramuscular progesterone injections and Clexane (a blood thinner), plus tests to see if my immune system was causing my body to reject our embryos. Despite not having any known inflammatory issues, my results were twice the safe limit for treatment, the clinic said, and I was given intravenous immunoglobulins (IVIG) and Intralipid drips, and a course of a powerful anti-inflammatory drug called Humira. We crossed our fingers and hoped, and tried not to think about the thousands of pounds it was all costing. But it felt impossible to stop: how could we, when the clinic had told us that my body was attacking our embryos? We had started down a rabbit hole we couldn’t get back out of.

Looking back, I was panicking. But ‘being proactive’ gave me a sense of taking back some control. It felt like I was doing everything I could do give our embryos the best possible chance of life, to give us the best possible chance of having a family.

Seven years later, I wish I’d had the knowledge and the confidence to be able to put the clinic’s claims into context, especially in relation to the riskier, more expensive and less proven elements of treatment they offered. If you’re going through this now, there are two main things I’d say to you:

A] Don’t panic, and don’t take add-ons as something that will necessarily help you take back control of the process – or at least recognise that might be what’s happening, and that it’s not necessarily an urge you need to act on, or that will make any difference to the outcome of your treatment.

B] Inform yourself. You can use the HFEA treatment add-ons rating system, and other resources like the ESHRE guidance on add-ons, to help inform your decision, and to begin a conversation with your clinic about whether or not it’s the right route for you. The more information you have, the broader your perspective on it will be, and the more well-informed your decisions will become. We can’t control the outcome of our treatment, but we can use tools like the new rating system to make the most informed decisions we can. Best of luck.