Be your own advocate
Six years, 700+ injections, miscarriages, several failed and cancelled IVF cycles, and international surrogacy in two countries. But by the end of it? Our precious son Spencer.
I don’t regret too much during our infertility journey. I do regret staying silent too often when people offered us advice, “You just need to relax” and “It will happen when you stop trying”.
But one of my biggest regrets? Not speaking up enough with our medical specialists.
It wasn’t until we saw our third fertility specialist, that I was properly diagnosed with having a thin endometrium lining. The endometrium lining is crucial to falling pregnant and sustaining a pregnancy. As one specialist put it, “You need rich and healthy soil for a plant to grow”.
The other infuriating part about my diagnosis? It’s easy to diagnose a thin lining. You can you monitor your cycle with ultrasounds and measure it. If it’s thin, you can try treating it with options like estrogen therapy and see if it increases. If it doesn’t? Then your lining could be an issue.
I firmly believe we would have saved ourselves time, money, and heartache if we had advocated from the very start.
It wasn’t until the second half of our journey, after several failed and cancelled IVF cycles and a ‘Pregnancy of an Unknown location’, that I realised the importance of speaking up and challenging the specialists.
After a few failed and cancelled cycles, our nurse one day casually remarked at an ultrasound that my lining was looking, “a bit thin”. The requirement to transfer in Australia is 6mm (it’s 8mm in the United States and many other countries). On a transfer that went ahead, my lining measured late 5’s/early 6’s. On the cancelled cycles, it was 4-5mm.
After our nurse’s comment, I started to do my own research. And boy did I find out a lot!
I discovered that with a lining under 6mm, it was almost impossible to fall pregnant or sustain a pregnancy. A lining between 6-7mm was not great either but you stood a chance. Ideally you needed above 8mm.
One research study I read showed that with a lining of 6-7mm, the pregnancy rate on an IVF cycle was 7.4 per cent. For women with a lining over 7mm, it was more than triple, 30.8 per cent. Also, the study only reported pregnancy rates, not live birth rates. Another study showed that with a lining of 6mm, of 35 embryo transfers conducted, only two babies were born.
What was the final straw?
On one transfer cycle, my lining was increasing at a gradual pace. Once it finally reached late 5mm’s, my specialist recommended we transfer as it was, “almost 6mm”. But through my own research, I had discovered it’s not uncommon for thin linings to fluctuate. As my transfer was five days after my last ultrasound, I insisted on a scan the day before our transfer. Not standard practice, my specialist reluctantly agreed.
What did the scan show? My lining had gone back down to early 5’s. There was no chance of our embryo implanting. The cycle was abruptly cancelled.
If I hadn’t insisted on the scan, we would have wasted one of our precious embryos. Feeling confused, angry, and betrayed, we changed specialists. Our third specialist hit us the hard truth - thin linings are rare, they rarely know the cause and they’re difficult to treat. And that gestational surrogacy was our best chance of having a baby.
Thanks to his diagnosis and gestational surrogacy, we have our beautiful son Spencer.
What I learned?
- Arm yourself with knowledge. You can’t always rely on the medical specialists. Read about infertility and learn from others. Online communities and magazines like IVF babble are invaluable in helping to expand your knowledge.
- Join a community. Talk to others going through it. Learn from their experiences. The ‘Trying to Conceive’ online community is a fantastic resource. There are so many of us out there.
- Come prepared to your appointment. Bring a check list of questions. For example – What are the success rates (and for your age)? How many embryos make it to Blastocyst stage? What are the treatment options? Side effects? What is a thin endometrium lining? What’s Pre-Genetic Screening (PGS)? There are so many questions you can ask.
- Take your time at your appointment. Don’t feel pressured to be rushed out the door. Speak up. Don’t stay silent if you don’t feel satisfied with an answer.
- Get another opinion. Get a second or even third opinion if you think you need it.
So much of infertility is outside your control. I think that’s something I struggled with the most. Like any medical disease, infertility is indiscriminate. But one of the very few things in your control is speaking up and being your own advocate.