The Problem With Infertility

A couple of years ago I was approached by a journalist writing a feature on male fertility. She was keen to include case studies of men who had been through cancer treatment and were therefore at risk of being infertile. Keen to start of my family sooner rather than later and eager to find out if I was among those infertile due to cancer I agreed to get involved. Fertility Test First up was a trip to a well known fertility clinic in central London to provide a sperm sample for them to test my fertility. This was something that I was already well prepared for, having previously provided samples prior to the start of my treatment for leukaemia. Second time round it was no less bizarre than it had been 12 years previously, although I was definitely more nervous as there was an awful lot more riding on it. The outcome of this test would decide definitively whether my wife and I would be able to try for a baby naturally or not. With all sorts of thoughts going round your head it's not surprising really that I found it difficult to, ahem, perform despite the array of visual aids available. Yes, they do provide magazines and videos though they're not anywhere near as appealing as you might think when you're in a tiny cubicle with seedy lights and disposable plastic coverings over all the furniture! Getting bad news After providing the sample it was a waiting game to find out the results. I'm quite used to this after all my various tests over the years for my leukaemia, and more recently my lungs, yet this wait - for an email - was in many ways much harder as the outcome would have impact my wife, just as much as it did on me. When the results came I think I was already prepared deep down for bad news. I never seem to be able to do things the easy way and I knew all the risks when I signed up to undergo intensive chemo and radiotherapy as part of my treatment for leukaemia. However the way the news was delivered, via a cold email that didn't actually spell out my infertility, (I had to Google the condition I had) wasn't the best and I advise anyone thinking about their fertility NOT to pursue a private clinic of this type. Anywhere that emails the results and doesn't explain what they mean in a way that they understand is not the place to go. I had to call them to sort out a follow up consultation (at extra cost of course) to discuss the results in more detail if I wanted one. That just isn't right. Beginning the long road to IVF My next step was to get in touch with the hospital where I was treated to find out more about my frozen samples, which I hadn't given a moment's thought about in more than 12 years at the time. Thank goodness I did as it turns out that the hospital had been trying to get in touch with me for almost three years to get me to come in to do a fertility test of their own to determine whether they needed to continue holding my frozen samples in storage or not. By rights, my sperm should have already been destroyed as I hadn't got back in contact with them despite their attempts to contact me. They were sending all the correspondence to an old address and an email address which was incorrect. Looking back I was incredibly fortunate, but to this day I do wonder why they didn't try calling me or checking with haematology at the same hospital who had been seeing me to check if their details were the same (which they weren't of course). The consultant talked through my results with my wife and I as the clinic should have done. I was actually still creating sperm just very few of them with limited mobility, which makes it highly unlikely that we could ever conceive naturally. He said that for us IVF really was the only way forwards and as it would be a long and very drawn out process to get in to the system and in a position to have a go. Bureaucratic madness What followed can only be described as bureaucratic madness. Despite having a referral from one of the leading andrology consultants in the country, my wife and I had to jump through so many hoops just to get an initial referral at our local hospital to officially begin the process. A series of tests for my wife followed (again delayed) and the start of an endless paper trail that included the same form on more than one occasion much to our frustration. Processing of these forms was also extremely slow and often only got followed up after chasing on our part. Eventually we got our referral more than a year after our initial meeting with the andrology consultant. IVF Once we were in the system with the Assisted Conception Unit things got an awful lot better and they were excellent with us from start to finish with our first round of IVF. Despite an amazing response to all the hormones and development of a strong embryo using my frozen samples, we sadly weren't successful on this occasion. Whilst the embryo did implant it stopped growing for whatever reason and we're now back at square one. The fact that we got that far is a positive sign and apparently such miscarriages after a few days are very, very common with couples trying naturally. The trouble with IVF is that it's all played out publicly so you know about a miscarriage at nine days whereas a couple trying normally wouldn't even be aware that they had even been pregnant in most cases. The future I'm optimistic about our chances going forwards but it hurts me that I've had to put my wife through so much both physically and emotionally. Despite it being my issue the pressure is now all on her as she has to do all the work and endure all the horrible injections and their side-effects. The fact that she's going to have to go through it all again upsets me but she's a strong and resilient woman and is as desperate as I am to have a baby. Regional inequality Anyone that's been through IVF, successful or otherwise, will tell you that it's an extremely difficult process and I think it's so important that more is done to raise awareness about fertility and the IVF system which currently isn't fair and places undue stress on people. The chances of conceiving during the first IVF cycle are less than 50% on average and yet only one round is funded on the NHS. With IVF treatment so expensive couples are under enormous additional pressure for it to work first time round and this is really detrimental to the chances of conceiving as it only increases the stress levels. If this was the same for all couples in the UK then at least it would be a level playing field. However it's not. In some areas couples are entitled to three or even four NHS funded rounds of IVF. in Croydon there is no IVF funding at all. Zero. Yet it costs £4,500 minimum for a round - an amount that some can't afford to pay. My wife and I are in a very fortunate position where we are able to pay for another round or possibly even two of IVF. However others aren't so lucky and it makes me so angry and sad to think that some may not be able to pursue starting a family purely because they live in an area where funding has been cut. That can't be right and something needs to change to make access the same for all. Raising awareness I've raised this issue with my local MP, Dr Rosena Khan, who is fantastic and has agreed to meet up with me to discuss it further. Whilst nothing will change as a result of this meeting I'm hoping she will at least raise the issue in parliament and put it on the agenda going forwards. I'm also going to raise the issue of provision for female teenage cancer patients who are being denied the opportunity in many cases to freeze eggs to use in the future if they're fortunate enough to beat their cancer and be in a position to want to start a family. Again this varies from hospital trust to hospital trust but it can't be right to deny young women such an opportunity as parenthood before they've even had a chance to live. I'll write a blog following my meeting with Dr Rosena Khan but in the meantime it would be great if you could help me raise awareness about fertility and IVF during National Fertility Awareness Week by sharing my blog post with friends and family and reading more about ways that you can get involved here: http://fertilitynetworkuk.org/national-fertility-awareness-week-2017/ Photo courtesy of Vitrolife and created by the Infertility Network UK