The Beginning

Introduction (why a blog?!)

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 sterile, 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.

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11 thoughts on “Introduction (why a blog?!)

  1. Sorry to hear of the difficulties you are both going through with this! I wish you both every sucess with IVF or whatever you decide to do! Life is sent to test us and this is definately a huge test but I know in my heart of hearts you will both make excellent parents! x All my love and I am here if u need anything! x

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  2. Hi, I’ve been trawling the Internet for people in a similarish situation to myself. We have like yourselves kept our struggle on the whole private. I always thought that children was a given and then I met my partner, who has cystic fibrosis. We did tests to check I’m not a carrier of the gene before starting our ivf journey. I struggled for a long time to accept that I was ready for children in complete denial to how long the process would take and how much it would make me want something that I was at one stage so resistant to. It’s been three years since we started, my partner had his sperm retrieval and i had 7 eggs collected to be called the same day to say my trigger hadn’t worked and they had not matured. They said that they would usually be disposed of but in our case (not sure why they made an exception) they would monitor them over night and see how they went. Over the next 5 days 1 died, 1 didn’t fertilised 4 survived to day 2 and 1 to blastocyst stage. I’m on day 11 of the two week wait, after frozen embryo blastocyst transfer, I tested stupidly on day 8 to a negative so have resigned myself to a negative on test day. Knowing how long it’s taken so up to now fills me with dread to what the outcome is going to be in 2 days. So I can only imagine how bad your feeling. Really hope they are able to do something for you both.

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  3. Thanks so much for your comment, I really appreciate you reading my blog and being able to relate to it. I find our type of infertility is the least understood. Whilst I can explain to people about my husbands cf, they still seem to think that if we just ‘relaxed’ we’d be able to conceive 🙄😡
    I’m sorry to hear that you had so many not mature, we also have that problem. They think that either my blood flow to my ovaries is not very good, or my ovaries do not have great receptors to pick up the drug. If we have to go through another cycle, I am to be given a double dose of the trigger injection. We’ve basically told them to give us as much as is safe to do so. I hope that you’re test results have changed of course and that you don’t have to go through another cycle, but if you do perhaps that’s something you could speak to them about.
    Infertility is brutal, it totally affects every part of your life. I hope that you’re doing ok. If you’ve still got a negative result I’m so very sorry, the grief is unimaginable. I’m here if you need anything 💜

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  4. It was still a negative, waiting on the hospital to call to see what happens from here. We have 4 day two embryos left frozen and another cycle if we have no success with our frozen ones. I think because its taken so long so I’m just a little fed up. I’m getting alot of ‘what will be will be’ reassurance, in a few days that might cheer me up but today it’s just not cracking it. I have very little faith given our blastocyst failed. When our eggs didn’t mature they said next time a larger dose would be given. I’m sure things will look more positive in a few days, your story gives me confidence that all is not lost x

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  5. It definitely isn’t all lost. Our first cycle we got one, very crap embryo and this cycle we got three good ones. Unfortunately, it is true, that they tend to get better the more cycles you do and the more the team learn about you. That of course, doesn’t make it easy to keep ploughing through. I’m sorry it was negative and I’m sorry people are giving you crap platitudes. It is never appropriate to tell someone doing ivf that, what will be will be, never. Please ignore these morons. Sending love xx

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