How do you put into words our infertility story; over five years of ups and downs, tears, small wins, tears, big losses, moments of excruciating pain – emotionally and physically – did I mention the tears?
While at the same time wanting to highlight every chronological detail, because let’s face it, every needle makes the story; and we have gone through (no exaggeration) close to 1,000 needles. The simplest way I can describe it is 11 rounds of IVF with 4 miscarriages along the way. Oh…and some tears.
I am Amber, my husband Simon and I started to try to have a baby when I was 30 and he was just 29. I must say first off that this is a story about two people. I couldn’t have got through a single day without him. It was a team effort. For many years I have said Simon is the true hero of the story. He looked after me and us and that was a harder job than mine.
I always knew it wouldn’t be straightforward as I have PCOS and endometriosis
What I didn’t know then was what the phrase “finding it hard to have a baby” would truly mean. Who would have thought that getting pregnant would not be enough, that my immune system might not want me to have a baby, that infertility forces you to move your own goal posts; maybe a surrogate is ok, maybe we do need a donor or actually our lives can be amazing with just the two of us. We slowly worked our way through the inventory of what IVF can offer; fresh transfers, frozen transfers, steroids, intralipids, humira, the scratch – EVERY TIME, gallons of progesterone, but as the years passed nothing would work. Sometimes we would get pregnant and see a heartbeat at 6, 7, 8 weeks and then nothing. Every time was different, bleeding, no bleeding, missed miscarriage but the outcome was the same. I am lucky that only once I had to have intervention to remove anything. I wouldn’t say I recommend anyone to have an MVA, but like I say about most things, “It wasn’t as bad as I thought it would be.”
These experiences are like no other but rather than wallow in the sadness or get bogged down with detail, my overwhelming desire is to help others and try to impart my knowledge. I have learnt so much but there are so many lessons I wish I had known. And I don’t mean the basics; “I wish someone had told me it might not work first time” or “I wish someone had told me I would have to take my clothes off all the time”. These are certainly valid and VERY true, but there is so much more.
Don’t take no for an answer
When I was 31 and had not had a period for a year, my GP said there was nothing she could do “I can’t give you a pill to make you ovulate. Don’t worry you are young and it will be fine. ” I wasted so much time thinking I would be fine. She made me feel like it was so unlikely I would have a problem. I knew something wasn’t right but I waited so I could jump through the hoops they say you have to do. You know your body and if you are not happy with the advice, question it. Or get a second opinion.
Time moves slowly
When you are having IVF a month feels like a prison sentence. When you are actually in a cycle you can feel hope and excitement, but when you are just waiting it’s miserable. I remember our first cycle was called off because I had a cyst interring with the hormone readings. This lasted for two months while they tried to get rid of it. It had to be drained in the end. Very painful. And then when we finally got to our first transfer I had OHSS (which turns out really can happen and it’s not that rare). I have never felt so awful in my entire life. Subsequently we had to wait three months before they would let me try again. And BFN (big fat negative). So at the end of those five months it felt like we were back at the start. Time during those days went slowly. This was when I began to perfect my fake it face. You get up, put on your costume and war paint for the day and go out and pretend everything is ok. I was lucky because my career meant a lot to me, it became even more important over these years and I put everything into it. I worked long hours; it was my coping mechanism. What also helped me was that early on I let people know what was going on. It’s hard enough dealing with these things; not being able to talk about it or finding an excuse when you are crying in the toilet is just not worth doing. Of course I didn’t tell my whole office but as the years went on people found out and I didn’t mind. It helped curb the questions of when was I going to have a baby…every time another person went on mat leave. That will happen and you have to watch them. It’s not easy, so it’s better if people know so they can be more sensitive.
Don’t pay attention to stats
It’s very easy with IVF to get bogged down in what the stats say. But as someone said to me once “You are not a stat”. I always felt like we were in the wrong percentage. Whenever there was a small percentage I would fall into it. Being in the 1% became an ongoing joke. The chances of having more than one miscarriage are about 4% and the chances of having more than three are 1%. But when you see a heartbeat at eight weeks the chance of you having the baby is 98%. All I could think of was stats lie. How could they always be against us. The best thing to do is just not think about them. You can only focus on you and hope for the best.
A yo yo-ing appetite
No one tells you about the yo yo appetite. One very positive thing about all my treatment was some of the time I had never felt better. I lost weight, I was doing amazingly at work, I bought beautiful shoes and we went on fantastic holidays. I was lucky the drugs never caused an issue. The only thing that did was the metformin. And I was supposed to be taking six a day. So the rest of the time I didn’t fancy eating anything. I become a mezze grazer. My colleagues really helped me through this! I became a huge fan of carrots, crisps with humus. I also went off so many foods completely. Things that I loved I just couldn’t face. A lot of the time it was how I imagined morning sickness would feel like. That constant underlying nausea. I could only laugh at the irony.
At the end of all this, the final lesson is hope. We learnt early on to always have hope because nothing else gets you through. If you don’t have hope you won’t have the stamina to keep going. You have to believe the odds are in your favour. That is what kept me going so many times; it can’t possibly go wrong again. I did joke that I became a masochist. My mantra very quickly became “I can’t give up because if I do I will never get what I want.”
The final question: is it worth it? People tell you it is, and it really used to it annoy me because I would think “Do you think I’m completely mad to do all this for something that will be mediocre?” When all the years, needles, false starts and millions of tears of devastation finally gave way to tears of joy, of course it has been worth it. Our little embryos 13 or 14 battled against all the odds and are now our 1 year old baby boy. Saying he is a miracle is an understatement and I still feel like I’m dreaming. And now I wouldn’t have had it any other way. All the other ones we lost were not him – he was just waiting. I get a lot of people saying I bet you didn’t realise having a baby would be so hard and I just laugh. Hard isn’t dealing with sleepness nights, never ending nappy changing or hoping they don’t cry in the supermarket. Hard was trying to get to all those moments and no one who hasn’t done it could possibly understand the difference.
I hope our story will bring hope but I know that for many it won’t help
I was that person and didn’t want to hear the success stories, because like those stats, everyone is different. If anyone wants to chat further even if it’s simply to tell your own story and have someone listen I am always available. You can get in touch firstname.lastname@example.org
Thank you to the wonderful Amber for sharing her story and for being such an incredible person. We can’t thank Amber, and all the other amazing people who have become and are joining us to be IVFbabble ambassadors, enough.