My husband and I were married in late 2012 and started trying for a family straight after, I was 33 and my husband was 37. 18 months later, we’d moved house and were very busy with it as it was a ‘fixer-upper’, however we weren’t having any luck conceiving and I suspected there was a problem. Then we lost my father-in-law very unexpectedly following a routine operation and our world ground to a halt. A few months later we managed to get ourselves to the doctors and started looking at what could be wrong, samples were taken and we awaited their reports. July 2014 my brother was killed in a car crash by a Polish driver who was on the wrong side of the road, my world was destroyed and I have no idea how I got through those first few months, never mind dealing with the phone call which told us that my husband would never be able to conceive naturally.
After months of tests and seeing geneticists, we were told that my husband had a rare form of Cystic Fibrosis. He was 39 and to get a diagnosis of a chronic illness that you never knew you had; was unthinkable. We were told that of the two Cystic Fibrosis genes, both of his were mutated, one carried the “normal” mutation (the one that results in all the medication and physiotherapy to remove the sticky mucus from the lungs and has a life expectancy currently of about 37 years old), the other was a mild mutation and is mainly asymptomatic. Because Cystic Fibrosis is a recessive condition, it was the mildly mutated gene which had been used by his body. The reason we discovered it when were trying for children, the one effect it does have, is that the tubes which takes the sperm from the testicles to outside the body (the Vas Deferens), do not exist – they simply never grew. We had an agonising few months when they couldn’t tell us if he even had any sperm at all, and there was a chance that he was completely infertile, however following a Surgical Sperm Retrieval, they confirmed that they were there and they are healthy – they just couldn’t get out.
We were then approved for IVF and we assumed it was just a case of trying a few times and we’d get pregnant. IVF isn’t that big a deal is it! We knew two other couples who had had IVF and now had kids, we were finally on the path to a family.
Unfortunately, it hasn’t been as simple as that (of course not!). Once we started treatment we discovered that I have a slightly Low Ovarian Reserve, which basically means that there’s not a lot of eggs left to choose from, which reduces the odds of success and makes the treatment more difficult to predict. To date we have been through two rounds of IVF, both of which have failed. We have been advised that on top of everything else, it appears that I do not react to hormone injections very well and our chances of ever having success are unbelievably low – between 5 and 10 %. Our hospital in Leicester is unable to treat us anymore; IVF treatment is not only physically devastating but it’s mentally heart-breaking and completely overwhelming and they feel it is morally questionable whether we should be put through the process again, with such a low chance of success. We are however, not ready to give up and are in the process of speaking with a clinic in London to see if they have any ideas on how to make this more successful.
So why am I writing a blog about IVF and my experiences? There’s a huge infertility community on Instagram and similar, but it took me over 2 years to find these lovely women and I think that’s because infertility is hardly ever talked about in general life. We are a case in point. In our combined pot of friends, family and acquaintances, there’s about a dozen people who know absolutely everything that’s going on for us. And I’m not saying that we should be broadcasting this from the rooftops, but there’s nothing to be embarrassed about or to hide; and I think all this secrecy does not help when you need advice or someone to turn to. Recently the BBC breakfast show did a series of small reports on infertility to raise awareness, they were great but hardly scratched the surface. So this is me – waving the infertility flag and saying it’s ok to be struggling to conceive, its ok to desperately want a baby and it’s definitely ok to talk about it. I wonder how many people who I’m friends with on Facebook are in the same boat. What are their experiences? Would mine help them, would theirs help me? We treat this like a disease, a hushed “they have to have IVF” conversation, or “I wonder why they’re not having a baby yet” gossip. If only they knew what we go through.
And if we all talked about it more – they would.
I know this may come as a shock to some people, this information about us. I’m sorry we haven’t told everyone face to face, conversations like that are just not easy to have and it isn’t currently acceptable to talk about eggs and sperm and injections and surgeries over a meal out! But maybe that needs to change.