I was asked to talk at my clinics open day. I wasn't sure, exactly what would be helpful. It seems so long ago that I was at that point - not really sure what the next steps were. Still, I had lots to say, so I went. Talked. It went well, a few couples came up after to pick my brain and ask questions. It was good.
Hi, I'm Sae. I'm a patient here, and have been for the last year or so. Last October I was diagnosed with diminished ovarian reserve. My AMH, which is my Anti-Mullerian hormone was low. It means that I have less eggs in my reserve than I should at my age. My FSH, my follicle stimulating hormone was high - meaning of what eggs I did have weren't of great quality. Essentially, I'd just turned 30 and I was already at the end of my fertility season.
I won't lie, it was pretty hard hearing that. I felt all sorts of things. I felt like my body had betrayed me, like my right to be a mother was threatened. I felt guilty - I may not ever be able to give my partner the family he wants. I felt broken. Infertility is hard.
I'm not sure where you are in your journey. I found out about mine with a blood test with my GP. When I found out my results, I essentially called her a liar and started looking for a second opinion.
I'm a UX designer by trade - which means that it's my job to design applications that meet the user need as well as the business needs, and I do that with data and research. Essentially, I used those skills to find myself the best clinic in London. I did three things.
1. Scoured the Internet for data. Most clinics post their success rates, and I was able to verify rates with what HFEA - the fertility authority in the UK posted. I looked at everything in detail, how many transfers they'd done, for what age bracket, for what kind of infertility. I found my top three - here, lister and ARGC.
2. I then looked for reviews independent of the clinics. This felt a little less scientific. I visited a million forums, reached out on Instagram and looked in half a dozen Facebook groups. You can be sure that all the horror stories you've ever heard are on the internet somewhere, right along with the clinic and the name of the doctor.
3. Lastly, I went and I sat in the waiting rooms of my top three, usually in my lunch hour on a Friday, which ironically was when almost all of the clinics were under pressure. This was the most revealing for me, I knew I'd be spending hours in whichever waiting room I chose. And in person, you can see how the clinic supports it staff. If the front of house and the nurses are frazzled, surely that trickles down to behind the scenes. Did they greet patients by name? Were they polite, friends with their patients? Could you hear private information that perhaps you shouldn't be able to hear? Some waiting rooms were better than others.
Needless to say I ended up here. As you can see this particular waiting room is quite nice. And the front of house staff is pretty amazing.
I don't know what your story is, or why you're checking out clinics, so it's a bit hard to know what to tell you. In the last year I've been through four rounds of IVF, and I'm hopeful. My hope takes the form of 6 frozen embryos waiting in a freezer downstairs. I'm so hopeful.
In the meantime, I thought it would helpful to share five things I wish I'd known this time last year.
1. Do your research.
Get your numbers and test results, and then read everything you can. Books, research papers. Do more than Google, or hang out in forums, there is so much more than that out there. You'll get more out of your rounds if you do. First, I'd suggest you read It Starts With the Egg, by Rebecca Fett. Also, check out NCBI PubMed - It's a place where all the research and studies are consolidated with an excerpt. It's an easy way to discover research studies.
As each round is super expensive - you want to do everything you possibly can to make it successful. From your diet, to what chemicals you're exposing yourself to in paper receipts or perfume. There's a lot out there that affects fertility, it's important to educate yourself on more than just the medical processes, but your lifestyle choices too.
2. Ask questions.
This follows on from the research. I'm not a doctor, or a scientist. For everything I learnt I'd come back to my doctor with a list of questions to ask. Sometimes Nurse Izzy would roll her eyes at me and ask why I didn't email them ahead of time, but I found It was helpful to talk things out and I was lucky that my doctor always made time for me. You also learn from each round you do, about how your body reacts to the drugs and what you can expect, so asking questions helps dig up other things to try. My first round looked nothing like my fourth round.
3. Find support.
This was the hardest for me, because I didn't know anyone going through it. My friends told me to relax, or just adopt, or did I ever consider not being a Mum and that was hard. I felt well and truly alone until I looked up #ivf on Instagram. There are blogs, forums and a ridiculous number of people going through what you are. I found it infinitely more helpful to message someone who truly understood. It got me through.
4. Make friends with nursing stuff and receptionists.
It won't get you special treatment, but it will make your time here easier. Truth is, they're all caught up in our journeys just as much as we are, and you'll find it much easier if you feel like you're among friends.
It's not hard to start conversation either, Nurse R is from NZ and almost always brings up the rugby. Nurse I is a massive frozen fan, and Nurse M is the nicest conversationalist. The front of house staff are equally lovely - J has a great fashion sense, and S and K are the nicest. Even behind the scenes - the anaesthetist T will let you change the location of the drip, and the embryologist will show you the embryoscope where your embyos will be incubated. It makes a different.
5. Be gracious.
Infertility is hard, and it hurts. Sometimes the clinic is busy, and you'll wait longer than you expected. Sidenote: don't try fit appointments into your lunch break - you'll always be late. Often the reason is because something has happened to another patient and the staff are dealing with it. At the time it's frustrating, but then it happened to me. In my very first round, after about a week and a half of stims I ovulated when I shouldn't have. No one could have known and instead of shunting me out at the end of my appointment I was looked after. I was so grateful for their compassion. So when I've had to wait longer than expected I've tried to be gracious.
So, just a quick recap. Do your research, Ask Questions, Find Support, Make friends with the staff and be gracious.
That's me done, if you have any questions feel free to come chat. My name is Sae, you can find me at hopeandhopscotch.com - thanks for listening.