IVF Babble

An insight into the taboo subject of male infertility, by Gareth Landy

So before we get going, firstly I have a question for you – have you ever heard of XXY or Klinefelter Syndrome? 

Now don’t feel bad if you have never heard of it as from my experience, no one has. What is XXY? At a chromosomal level women are XX, men are XY, I am XXY. I was born with an extra X chromosome. This must sound very unusual but it is actually much more common than many people realise. In fact XXY is the most common underdiagnosed chromosomal condition to affect boys and men in the world. 

I prefer to refer to my condition as XXY as I have experienced being seen in a lesser light when people hear the word “syndrome”. It also works much better for when I want to start a conversation with people and to explain who I am.

How we became aware of this condition was when we were trying to have a family and Anna couldn’t get pregnant. Before we even tried, Anna had to come off her medication for her MS (Multiple Sclerosis). Anna had suggested that maybe I should have a medical check to see that everything was okay on my end. By Anna being off her medication we also had a tighter window.

When I had my first sperm analysis the GP (doctor) told me that the result came back negative

I have to say the GP wasn’t overly concerned at this stage as they explained that sometimes mistakes can happen in the lab. Around a week or so later I was back at the GP’s for another appointment; she asked me if I had ever heard of Klinefelter Syndrome to which I said no.

A second follow-up sperm analysis was arranged; the results came back and it was at this point that my GP told me that it was a ‘negative sperm count’ again. When I got this news it was so difficult, how was it possible that I didn’t have sperm? I didn’t even know this was possible. I had never heard of any man being born without having sperm, sure I had heard of men losing the ability to produce sperm through an accident but not this. Had I done something in the past, I’d always worn condoms when having sex, how could this happen? I had more questions than answers. I felt so lost. What do Anna and I do now?

The GP recommended going to see a specialist so we made an appointment to see a private Urologist. When we went into the office, I had no idea of the massive bombshell that was about to be dropped.

I felt that he’d say, ‘Gareth if you take this course of medication…’ I felt there would be an actual explanation, something that was a tangible path for me. What happened instead was that the urologist briefly examined me, looked at my sperm analysis results and said: ‘Gareth it doesn’t work downstairs, you need to get over this and move on’.

At that moment I sat there in complete shock and silence. I would describe it as an out of body experience as I completely retreated within myself. I had all these questions such as, ‘did he just say that, no he didn’t, did he, maybe I misheard him’ or ‘there are fucking terrorists in the world who can have children why can’t I’. All these thoughts were racing through my head at lighting speed.

At this point I did not know that I was XXY by the way

Anna asked a few more questions but honestly I can’t remember anymore of the conversation. She told me afterwards that she’d asked about adoption and he was equally unhelpful with his response saying that her having MS would rule us out as being eligible to adopt. I left the urologist’s office in a complete daze and when we got outside we both broke down. Even now I can recall that overwhelming emotion of feeling so broken and feeling so hurt by this medical professional.

Over the coming weeks I began to drink more alcohol and play more violent computer games

It was pure escapism, I felt so lonely as I didn’t know anyone who was a man who had gone through what I was going through. I was aware that infertility affects women as it is talked about much more openly in society but I didn’t know of any men. At this time my dreams began to change. I had a repeating dream about a small child that was with Anna. I would kneel down in the grass outside our home with my arms wide open and a big smile on my face. The child would start to run to me but as it got closer it would begin to fade and in the end it would never ever make it to me. I would be there by myself longing to hold the child that was now gone. When I talked to my therapist about this, she told me that this was my brain working through the trauma of not being able to have a biological child.

While all the above was going on, Anna had begun to do further research and to look for a second opinion

She made contact with a very experienced Urologist based in London called Jonathan Ramsay. We live in Ireland so to get to London was only a short hop on the plane. Mr Ramsay has extensive experience in working with XXY people and is one of the leading experts in the world in male factor infertility. Meeting Jonathan Ramsay was amazing. He is a kind and caring person and we felt immediately at ease in his company. There were no airs and graces with him, he could have retired years ago if he wanted but it’s obvious that he continues to work as he cares for people.

During our consultation, he explained to me in a very visual way what he proposed could be a potential solution for us. He drew a picture of the testicles and put little black dots on each testicle. He then explained that sometimes for whatever reason there can be a blockage in the penis so the sperm can’t be delivered in a natural way. The black dots on the picture were a representation of where needles would be inserted into each testicle. He told us that this is a way of mapping the testicles to find pools of sperm, this is called an FNA (Fine Needle Aspiration). Mr Ramsay then explained that if the operation was successful I would have to get another operation at a later stage called a Micro-TESE (Testicular Sperm Extraction), which as you can guess is extracting the sperm.

Before we did any of this he said I had to be tested to see if I was an XXY person

To find out you need to give a blood sample which is then tested for a particular Karyotype. The results wouldn’t be available immediately. I remember how kind the nurse was to me when she was doing the blood test. Though now I am better but at this point I had a really bad fear of needles so it was very difficult for me to have to do this but I knew that it would be worth it for Anna and I. After all the various appointments Anna and I went to see our friend Odharnait (Irish name pronounced: Orr-nethe). That night we went for dinner and went to an interactive performance of, ‘The Great Gatbsy’, which was absolutely fantastic and great craic. It was great to be in London and for a few hours forget why we were here in the first place.

Back in Ireland we got a call from Mr Ramsay. The results had come back and he wanted to confirm that I am an XXY person. Getting this news was both confirmation for me that I’d done nothing wrong to endanger my fertility but it was also so difficult to fathom what it meant for both of us in trying to have a family. 

Soon enough we returned to London for the FNA

We booked into an Airbnb in Shepherd’s Bush in the city. Even now I can recall leaving the house in the early hours to go to Hammersmith for the operation. I find hospitals a hard place to be as my mum had died in a hospice and going to them always brings up mixed emotions. We checked in and got our room and after a short while Mr Ramsay came to see us. As before, he was caring and warm and we trusted him.

Following the operation I was in my room drinking tea. I often wonder when a person comes out of recovery and their hand coordination mightn’t be the best, why the hospital provides cups with tiny little handles that are difficult to hold. I mention this as my memory is able to remember the smallest detail. Even now I can recall the position of the bed in the room, where the window was all this mundane information I remember. Being able to do this is a trait of being XXY I believe; it is called an eidetic memory. Until very recently I thought everyone could do this.

When Mr Ramsay came into the room you could tell that he was excited. Before the operation he had told us that for XXY people who retain the ability to produce sperm, this ability generally decreases in their mid 20s and I was 37 at this point. He then told us that I was the very first person in the world that he was aware of who in their mid to late 30s still had the ability to produce the building blocks that make sperm. He then told us at this stage that he believed that I was a mosaic within the XXY sphere which means that I have both XY and XXY sex cells.

Anna and I were so excited as there was a glimmer of hope that I could still have biological children

Mr Ramsay then advised the next step to possibly get us to this point. He said that I would have to go on a cocktail of different hormones, one of which was Clomid (given to women for breast cancer treatment). The approach was that by taking all this medication my body would turn it into testosterone which would become the fuel for my body to then make sperm.

After the operation, as you can imagine, I was very tender. When we did finally get back to the Airbnb we realised the problem with our accommodation. The room we were staying in was up at least four flights of stairs. We hadn’t thought ahead of time to find a place with a room on the ground floor. It took ages for me to slowly shuffle up the steps. When we got to the room I got into bed and crashed out as I was so exhausted.

Over the coming days everyday small tasks such as crossing the road became very slow and difficult. I was so thankful that the curb at the various pedestrian crossings was so low. To step down from a high curb was simply too painful. While everyone around me raced across the road it was as if I was walking in slow motion, I had to tread so carefully. Even sitting down in a chair at a coffee shop or a restaurant had to be planned. I couldn’t just sit down on any chair. I needed a cushion first as my testicles were so sore. As bad as all this was, what I found the worst was not being able to shower. After the operation and when I woke up I was wearing a medical jockstrap that lifted my penis off my tender testicles. I had to wear this non-stop for a few days afterwards which started to become horrible.  At one point there was concern that I could have an infection following the operation but thankfully this passed.

We all know how travelling can be so stressful at the best of times. Anna and I had to get across London and to the airport to fly back to Ireland. I remember walking through some of the older tube stations and learning that there wasn’t a lift option and then having to walk ever so slowly down the steps while hundreds of others raced past me. After what seemed forever we made it to the terminal. When it was time to board we headed out to the aircraft and then I realised that this operator didn’t use the sky bridges, they used the inbuilt stairs of the plane. Again slowly I went up and into the aircraft, we finally found our seats. What a day and we’re not even home yet.

This was only the start of our path to potential parenthood and we were both exhausted

These are things that you never think of when you put yourself through so much physical and mental pain when trying to have a family. 

Over the coming days, I very slowly started to recover. Though I didn’t realise it at the time, the first operation had a real impact on my natural testosterone levels. There is a scale that measures testosterone which is from zero to 30. Most men’s natural levels are between 19-24, my levels were originally 11-13. Following this operation it was confirmed through a blood test that my levels had crashed to four. Mundane things such as walking to the shops to get a loaf of bread were beyond me. I was physically unable to walk this far. Considering that in 2016 I ran a marathon a distance of 26.2 miles I now couldn’t walk maybe 800 metres. My mood at this time was affected. I felt helpless but I knew that what I was doing would hopefully pay off.

In the coming months my testosterone levels began to slowly rise. I was now taking a combination of different hormones which had been prescribed to me by Jonathan Ramsay as mentioned earlier. At times I felt it wasn’t worth it as I felt so mentally and physically shattered.

Thankfully I was able to get back into my running which had such a positive effect on me. Sure I wasn’t out running the big distances I had been but I was outside, it was a start.

Over the coming months my testosterone and other hormone levels began to rise

I used to have a business which included producing high end wedding films. Most of the weddings I filmed were Catholic. I don’t know if you are aware but there is such emphasis in the Catholic ceremony on a couple having children. This was hard for me to hear and quite often there would be a lot of children at the weddings. In my head I would be struggling with my potential infertility and then at the same time trying to be professional and film the wedding with all these children around me. Weddings in Ireland are a long affair, my average day could easily be 13 hours plus the driving. Sometimes I would have to bring another videographer with me to help film the wedding. I would get tired and would need to rest from time to time as my hormone levels were still low.

During this period, I have to say Anna was really so amazing and supportive. She organised and researched so many things for the two of us to attend. I am so lucky to be married to such an amazing person.

One of the events that Anna found out about was run by the ‘Donor Conception Network

They are a charity that aims to develop awareness and provide support to couples who are looking at using a donor and helping donor-conceived people. Anna found out that they were holding a two day event in Belfast, which we attended. It was really fantastic as you got to meet other couples who were in a similar situation to yourselves. I would encourage people to attend these events as you realise that you’re not alone. 

Following my first operation Mr Ramsay had told us that we couldn’t put all our hopes and dreams on hoping that I would be able to produce sperm. He told us to start to research the option of potentially using a sperm donor. At the event we got to hear some brilliant speakers. This event had a massive and positive impact on both of us. I was already open to possibly using a sperm donor but I had only read about it online, I hadn’t met anyone who had done it. One of the speakers was a guy called Danny and he was a dad to sperm donor conceived children. When he spoke about his children being born he became very emotional in a very positive way. He talked about being in the hospital and holding his child which was so moving. For both Anna and I this was such a hard but positive experience.

Later that day a woman spoke who is a donor conceived person

Hearing her speak was such an emotional and moving thing. I remember her saying, ‘the man who gave the sperm for me to exist is important but the man who changed my nappy, brought me to school, taught me to drive, he is my dad’. I began to cry as her words were so validating and immensely powerful to me. If Anna and I had to use a donor it definitely wouldn’t be a distant second option.

Leaving the event I felt so positive about the potential opportunity of using a donor.

Gareth will share the rest of his wonderful journey with us next week. In the meantime, you can follow Gareth on instagram by clicking here.

Click here to listen to Gareth’s interview with BBC Radio

                                                                                     Gareth and his wife Anna

 

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