I have finally decided to share something that changed my life nearly two years ago. I want to share it because I no longer wish to hide from it. Furthermore I hope my story offers some hope to those who have also been diagnosed, especially us men as we are often more secretive and less willing to open up about our problems.
Just under two years ago at the genetics department in Addenbrookes I found out that I had a Mosaic Y Deletion. This in simple terms means that a section of the Y chromosome that makes me male was missing in many of my cells and in some cases the Y was gone altogether. The severity of the deletion is rare and often has serious side effects.
Fortunately after a number of tests on various organs including my heart I was given the all clear. I was told by the geneticist that I was very lucky to have made it to 29 years of age with no life threatening diseases. Many boys born with the condition don’t survive childhood. That was the good news.
The bad news of course is how I ended up seeing a geneticist in the first instance. I can trace this back two years earlier when my wife Jen and I decided that we wanted to start a family. After 12 months with no success I booked an appointment with my GP who sent me to have a sperm test done. It is not uncommon anymore for men to have either a low sperm count or low quality sperm. The number of cases in the western world have been steadily increasing over many years and they often point to poor diet, high stress and a lack of exercise. I certainly fitted the bill!
The Bad News
However my results were unexpected with no sperm found at all. My GP was so surprised he ordered another test and he assumed there had been a mistake. It wasn’t a mistake and I was transferred to Bourn Hall in Cambridgeshire to see one of the top fertility urologists. He told us that there was a good chance they could find viable sperm using a special extraction technique providing the genetic tests came back ok. The genetic test divided the Y chromosome into sections A, B and C. Providing I had nothing missing in sections A or B meant the chance of retrieving sperm was very good and I felt reassured that over half of men who are infertile don’t have these sections missing. The odds were still stacked very much in my favour.
When it came to the results of the test I was quietly confident. We left early and it was a nice sunny September day. Nothing could have prepared us for the results. As it was read out time literally stopped and my mind went blank. I could not believe what I was being told. Not only did I have sections B and C missing but in one third of all my cells I had no male Y chromosome. I was sterile and there was no chance I could ever father children of my own. Adoption and a sperm donor were our only options going forward and I would immediately undergo tests on my heart and other organs to rule out anything abnormalities that are common with my genetic makeup.
When we were told the news my reaction after leaving the hospital was that this was just another hurdle in life and given time we would get through it together. Looking back now I was very much in denial. I didn’t want to believe the results and as they gradually begun to sink in over the next few days my whole personality and outlook on life started to change.
I am not going to pretend I am an optimist – I like to call myself a realist which is a nice word for a pessimist. However the levels of pessimism really started to climb. I believed that everything was set against us and the idea that things could work out eventually started to die away. The business I had set up years before was now having a profound effect on my daily life and adding stress in ways I could no longer bury.
It was at this point in our marriage when my wife booked an appointment for me to see a fertility counsellor. It helped in some ways but certainly didn’t do anything for our marriage which was the part that had been overlooked since the results. I was so caught up with the results and we disagreed on the path forward that things started to unravel. Our relationship never recovered from that news and we both made mistakes that we now regret. We forgot to listen and respect one another. I buried myself in work to try and take my mind of off the news and forgot I had a wife and dog at home.
It has been nearly two years since I got the news and in some ways I am better, in other ways I am still recovering.
Two Years On
Coming to terms with not being able to father children was not as difficult as I had expected. Time proved a good healer and after 18 months and support from a dear friend enabled me to see that both adoption and a sperm donor would not stop me from a being a father. We of course had adopted our dog called Monty and I love him so much.
The real problem I found is actually accepting and living with the knowledge of the condition. It has lead to periods when I am very low and have resorted to drinking more alcohol than I should to try and block the negative thoughts. Initially we told only our parents but gradually we started to tell close friends and family which was positive as it offered additional support which we both needed.
Don’t be ashamed of your results and tell friends and family. The more support you have the better.
Most importantly don’t forget what you do have. It’s easy to get caught up in it all and forget about each other and your family. Support one another and try and find perspective and appreciate what you do still have and focus on those positives.
I am very much in transition myself and still have difficult days but mostly I have been able to accept my condition and get on with living life.