Male Infertility – The Rarely Discussed Aftermath

The following is a guest post shared with DCYBs from our friends at Fertility Help Hub.  FHH’s founder, Eloise, talks openly at FHH about her personal journey using donor sperm after her husband’s non-obstructive azoospermia diagnosis and unsuccessful micro-TESE operation. This post is Eloise’s husband’s perspective on their journey, his experiences, diagnoses, and outlook.

Tests

Being told that I had azoospermia (lack of sperm) was the most soul destroying thing I have ever been told. My wife wasn’t with me when I got the news and calling her to tell her, with my hands shaking and heart racing, was near enough impossible because I couldn’t quite comprehend it myself as we’d only been trying to conceive for six months and had just sought fertility specialist help.

The Diagnosis

Having seen more urologists than I’ve had hot dinners (or so it seemed), a blood test confirmed the diagnosis that we had been dreading, that I have Klinefelter Syndrome – a rare genetic condition which affects approximately 1 in 600 men worldwide. That’s not a small number. Klinefelter Syndrome is a genetic condition affecting boys and men that occurs as a result of the presence of an extra X chromosome.

The condition is typically characterised by tall stature, reduced fertility and development of breast tissue, although some patients have no clinical features other than reduced or absent sperm count (azoospermia). Some of these things apply to me, but like me many men don’t find out they have it until they’re trying to conceive and may not be able to.

Where Klinefelter Syndrome is suspected, blood tests will be carried out to assess levels of testosterone and gonadotrophins (luteinising hormone and follicle stimulating hormone). In patients with Klinefelter Syndrome, blood tests characteristically show a low testosterone level, high sex hormone binding globulin (SHBG) and raised gonadotrophins.

The diagnosis of Klinefelter’s syndrome is confirmed by chromosomal analysis (karyotyping), which involves a blood test.

The Operation

Leading up to my Mirco-TESE (sperm extraction) operation in New York, I was advised by my fertility specialist to inject with female hormones, in the attempt to up my natural testosterone levels for when my testicles were dissected. This was a very unsexy daily marital routine, where my wife injected me in the stomach with subcutaneous needles. Despite our best efforts to get my body performing at its optimum, the operation was unsuccessful. Whilst I was recovering in a hotel bed after a 5-hour operation under general anaesthetic, my wife had her eggs retrieved the next day and we weren’t together when the news was confirmed that we’d be using the donor sperm we had on ice.

Whilst microsurgical testicular sperm extraction (Micro-TESE) and intracytoplasmic sperm injection have helped some men with Klinefelter Syndrome to father children, this wasn’t the case for me. Hindsight is a great thing.

Mourning My Genetics

Round 1 with donor sperm failed and to some extent that was a relief – not for my wife, but for me. All the above had happened in the space of 5 months and we were moving at the rate of knots. Did I have time for the news to settle in and for me to mourn my genetics when we got our IVF BFN (big fat negative)…NO. However, a few months later, when we went back to the States and my wife had a frozen embryo transfer with one of our two remaining blastocysts, the future seemed somewhat brighter. I was in less pain, able to enjoy time with my wife on ‘holiday’ in New York and we reconnected as a couple.

This cycle worked but whilst I was overjoyed to have a baby of ours on the way, there were some triggers during the pregnancy which would set me off. For example, scans. My wife didn’t want to find out what we were having, but for me that was imperative for the bonding process, so we did and this helped. I could now imagine our daughter.

How Has This Impacted My Health?

When you’re desperately trying to conceive and all you want is that baby at the end of it, it’s sometimes easy to lose sight of your own health and wellbeing. We were so focussed on the operation that we didn’t really investigate how it would impact my body and testosterone levels long-term. I knew that I would need testosterone replacement therapy long-term but didn’t realise how much lower my testosterone levels would drop as a consequence of the damage to my testicular tissue. Had I known this, would I have had the operation? I just don’t know…

The reality for me now, is that every nine weeks I have to have an intramuscular testosterone injection in the bum, in order to increase my testosterone levels artificially, because they have dropped so low due to my operation and genetic condition. This is uncomfortable and the side effects are increased sex drive, spots, headaches, more hair and a sore arse! Unfortunately this also means that I am at higher risk of blood clots and stroke.

Visit Fertility Help Hub for more information and resources.