“My hands were shaking.” Male infertility and the aftermath no one talks about
Fertility in Klinefelter Syndrome – our story, unpacked
In June, the world marks Men’s Health Week – and at The Ribbon Box, where male infertility is close to our hearts, we wanted to shine a light on something rarely discussed: the aftermath of male infertility.
I’m Eloise, founder of TRB, and I’ve shared parts of our personal journey here before, including our decision to use donor sperm after my husband’s diagnosis of non-obstructive azoospermia and an unsuccessful micro-TESE operation in the US. But what happens after all the fertility help is over?
What are the consequences – physically, emotionally – of putting your body and mind through so much, only to hear that the operation wasn’t successful? What are the long-term effects, when the appointments stop but the impact doesn’t?
We felt it was time to hear from the male perspective. So today, we’re handing over to my husband, Jack.
There’s also a LetsGetChecked discount on at-home male health, hormone and fertility tests – keep reading for more.
Male fertility tests
“Being told I had azoospermia (no sperm) was the most soul-destroying thing I’ve ever heard.”
My wife wasn’t with me when I got the news. I remember calling her, hands shaking, heart racing and barely being able to get the words out. We’d only been trying for six months. We’d just started seeking specialist help. I couldn’t believe it.
Infertility diagnosis
I’ve seen more male infertility urologists than I’ve had hot dinners, or so it felt. A blood test eventually confirmed the diagnosis we were dreading: Klinefelter Syndrome, a rare genetic condition that affects approximately 1 in 600 men worldwide. Really though, that’s not a small number.
Klinefelter Syndrome occurs due to the presence of an extra X chromosome. It often goes undetected until adulthood, and many men only discover they have it when they start trying to conceive.
Typical signs can include taller stature, reduced fertility, and development of breast tissue, although some men experience no symptoms other than azoospermia (lack of sperm). Some of these apply to me, but not all. And again, like many others, I didn’t know I had it until we started our fertility journey.
My first question was:
Can male infertility be reversed or treated?
Was I officially infertile?
The odds weren’t in our favour.
Testing for Klinefelter Syndrome
Where Klinefelter Syndrome is suspected, several blood tests are usually done to assess levels of key hormones:
- Testosterone
- Gonadotrophins (LH and FSH)
Men with Klinefelter Syndrome typically show:
- Low testosterone
- High sex hormone binding globulin (SHBG)
- Raised gonadotrophin levels
To confirm the diagnosis, doctors carry out a chromosomal analysis (karyotyping), which is a specialised blood test that looks at a person’s chromosomes in detail.
This is just one story, but it’s a story that’s rarely told. And if you’re navigating male infertility, a diagnosis like Klinefelter Syndrome, or just need support, you’re not alone.
The micro-TESE operation
Leading up to my micro-TESE (sperm extraction) operation in New York, my fertility specialist advised a course of hormone injections in an attempt to boost my natural testosterone levels ahead of the procedure. This became part of an unglamorous daily marital routine – my wife injecting me in the stomach with subcutaneous needles. Despite our best efforts to get my body performing at its optimum, the operation was unsuccessful.
While I recovered in a hotel bed after five hours under general anaesthetic, my wife had her eggs retrieved the following day. We weren’t together when the news came through: we’d be using the donor sperm we had on ice.
Microsurgical testicular sperm extraction (micro-TESE) and intracytoplasmic sperm injection have helped some men with Klinefelter Syndrome to father children, but that wasn’t the case for me. Hindsight is a great thing.
Mourning my genetics
Our first round with donor sperm failed. And to some extent, that came as a relief. Not for my wife, but for me. All of the above had happened in just five months, and we were moving at a relentless pace. Did I have time to process the news and mourn the loss of my genetics when we got our IVF BFN (big fat negative)? No.
But a few months later, when we returned to the States for a frozen embryo transfer using one of our two remaining blastocysts, things began to feel different. I was in less pain, and we were able to enjoy time together in New York, reconnecting as a couple.
This cycle worked. And while I was overjoyed to have a baby on the way, there were still moments during the pregnancy that triggered something in me, like the scans. My wife didn’t want to find out the sex of the baby, but for me that felt essential to begin bonding. So we found out. We were having a daughter. I could now picture her – and that helped.
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 easy to lose sight of your own health and wellbeing. We were so focused on the operation that we didn’t fully explore how the procedure and condition might affect my body (and my testosterone levels) in the long term.
I knew I’d need testosterone replacement therapy eventually, but I didn’t realise just how significantly my levels would drop due to the damage to my testicular tissue. Had I known this beforehand, would I have gone ahead with the operation? Honestly, I’m not sure.
The reality now is that I need an intramuscular testosterone injection every nine weeks to artificially raise my levels, which are extremely low as a result of the operation and my genetic condition.
It’s uncomfortable, and the side effects include increased sex drive, breakouts, headaches, more body hair and a sore bum. Unfortunately, it also puts me at a higher risk of blood clots and stroke.
Blood tests from home
With all the above in mind, I wanted to check whether my prostate levels were within the ‘normal’ range. Had they been affected too, like my testosterone after the surgical procedure?
My wife had recently tested her fertility using an at-home blood testing kit from LetsGetChecked, and I wondered if this could be the way forward for me – especially with limited access to medical facilities during the Pandemic. Could this kind of testing be the future, helping to avoid unnecessary trips to the doctor’s office?
The instructions were straightforward: drink water beforehand, stand up, and position your finger correctly over the collection tube provided in the pack. Despite following the steps to the letter, my blood wasn’t cooperating. It took a few tries, using the multiple lancets supplied, to get enough into the tube to send off to the lab.
The results
I was genuinely impressed by how simple and fast the process was. I sealed the sample securely, popped it in the free-post envelope provided, and sent it off – then promptly forgot about it. A few days later, I got a text confirming the sample had reached the lab, and a few days after that, my results arrived by email.
Fortunately, there was no cause for concern, so I didn’t need the follow-up nurse consultation (which they offer if your results aren’t as hoped).
For anyone scientifically minded, here are my actual results.
The future
While my prostate results are in the ‘normal’ range and everything looks good, living with Klinefelter Syndrome does mean I’m at a slightly higher risk for certain health issues.
These can include osteoporosis, obesity, varicose veins and leg ulcers, autoimmune conditions (such as diabetes mellitus, systemic lupus erythematosus, and thyroid problems), chest conditions (including bronchitis and emphysema), and a possible increased risk of some cancers (male breast cancer, germ cell tumours, and non-Hodgkin’s lymphoma).
One thing the Pandemic period has made clear is just how easy it is to get important tests done from home. From now on, I’ll be using LetsGetChecked finger-prick blood tests wherever possible, cutting down on trips to the doctor’s surgery – though sadly, the testosterone injections in my bum are here to stay.
LetsGetChecked offers a full range of at-home health tests, and The Ribbon Box readers can get 25% off by using the code RIBBON25 at checkout.
