Hopefully, by this point you will have read about the beginnings of my journey with understanding male infertility. Like many men in my situation, a doctor had just told me that I had azoospermia, a term that up to this point, I had never heard of. Fertility wasn’t front and centre at this point, at least for me, so these unfamiliar medical terms would become the new normal.
What is azoospermia?
I’m sure a medical definition would be appropriate here, and I’ll add one shortly. However, the best way to explain this is that there is simply no sperm (zero) present in your semen. If you’ve got a small number, or even a tiny number, there are medical terms for that but it wouldn’t be azoospermia. This is one of the most severe male infertility diagnoses, as any hope of natural conception goes out of the window and assisted reproduction (IVF) becomes the focus of conversation.
The NHS defines azoospermia as “a lack of measurable sperm in the male’s semen.” This is split into two key types.
Obstructive azoospermia: Sperm are produced by testicles, but are unable to be found in the ejaculated semen because of a blockage to the sperm transport or absence of the vas deferens (the tube which carries sperm away from the testicles).
Non-obstructive azoospermia: The testicles are either producing no sperm or very low numbers of sperm and sperm is not present in the ejaculate.
The type of azoospermia you are eventually diagnosed with will be extremely important in terms of your treatment plan and probably outcomes. Men with this horrendous diagnosis may initially not know what category they fall in. It is important to continue with diagnostic tests to further understand your condition.
Finding out which type of azoospermia I had
My urologist was fantastic at explaining what the lack of sperm in my semen meant and he immediately booked a face to face follow up appointment. A couple of weeks later, I found myself sitting in his consulting room, with many questions!
“This may seem like an irrelevant question, but do you by any chance have any family history of cystic fibrosis?” he asks.
“No, nothing that I’m aware of” I replied in a concerning, and slightly inquisitive manner.
“I only ask because there are a small number of infertile men who are carriers of cystic fibrosis and they have a condition where part of the reproductive system doesn’t fully develop, leading to obstructive azoospermia” he explained.
With that, he asked me to lay on the bed so he could perform what he described as a “very in depth physical exam”. I was used to my balls being touched by doctors by now, but this did sound a bit ominous! And oh boy, he wasn’t joking! He pushed his fingers passed my balls and deep into my body. I watched his face as he appeared to be struggling to locate something. It started to hurt a bit, but I let him continue until he stopped, sighed, and said “no vas, it seems”.
We sat back down on our chairs and he revealed the purpose of the physical exam. He explained that he believed he could not find my vas deferens, which is the tube that carries the sperm out of the testicles. He wasn’t 100% sure about this, but he said he can usually feel them when doing the invasive exam. With that, he suggested that we now move on to some key diagnostic tests to further understand what might be causing the issue, and he really wanted to verify his own thoughts around a potential obstruction. I left his office feeling none the wiser, but at least there was a plan in place.
Diagnostic testing
It was now around April 2023 and suddenly I had lots of diagnostic tests booked in at a private clinic in London. It was also relevant that at this point, I had been formally referred to a new doctor. The previous urologist I had been seeing was brilliant, but he referred me on to an andrologist, who specialised specifically in male infertility. I felt I was in the right hands and that things were moving along as they should.
MRI & ultrasound
I had an MRI scan and ultrasound scan at the same time in a private hospital in central London. For anybody who needs to undergo an MRI scan (for any reason) I would say the fear is overblown! It was a really pleasant experience overall. The only unnerving part is that the machine is very loud and it clanks around for about 30-40 minutes whilst all the magnets move about.
Fortunately for me, the staff were kind enough to provide headphones with my choice of music! For people who are a bit claustrophobic, it can be difficult being stuck in the machine, but just be aware that at any time you can press a button to be pulled out.
The ultrasound took place straight afterwards and was much the same as my previous experience. Cold gel on the balls followed by an ultrasound scanner being repeatedly (but gently) passed over. The radiologist suggested that there were no concerns to report and sent me on my way.
The scan results provided major answers
About a week after my scans, I found myself sitting in front of the andrologist. He introduced himself and familarised with my medical notes, but very quickly he got into the nub of things.
“Jamie, your MRI scan has indicated that you have CBAVD (congenital bilateral absence of the vas deferens.”
CBAVD is something that I have come to learn a little too much about, but it’s basically where the two tubes that carry sperm were never formed, hence it being a congenital condition. I was essentially born with a vasectomy! The previous urologist was absolutely right with his judgement, and what a testament that is to the vast knowledge they have.
An MRI scan is obviously a very comprehensive imaging procedure that can detect structures within the body. I had an MRI with contrast so that structures showed up more clearly. The absence of the vas was clear on the scans.
CBAVD is an obstructive form of azoospermia. If you receive such a diagnosis, and if the assumption is that you have normally functioning testes, then this can actually be ‘good’ news. I emphasise this in italics because being infertile is hardly good news… but at this point I feel you’re clinging on to the hope that having functioning testes may result in a simpler approach to treatment.
An unexpected test to end the day
If you’re a man going through this journey, I’m sure you’ve already had your fair share of awkward moments. There are some of you who may be facing these upcoming challenges and perhaps you feel embarrassed or uncomfortable. I wanted to share this particular experience as it’s another good example of how sometimes, as awkward as things get, the bigger picture is more important.
As my consultation was about to end, the andrologist said “hopefully you have some time to do a couple of quick tests.” He spoke quite fast but he was proposing two tests, which wouldn’t take long and that nurses along the corridor would explain. I sensed that one was a urine test and the other was a genetic blood test. CBAVD is often related to cystic fibrosis, so there was a sense that we should test for any mutations. There was still some minor testicular pain so I believed the doctor wanted to test for bacteria in the urine.
I scuttled my way down the corridor to the nurses room. I was doing this on my lunch break at work, and I hadn’t really factored in time for testing! A nurse came out with what looked like a giant blue tray and sat me down in a consulting room. The tray contained 3 sample containers. She went on to explain the aim of the game:
“They’re all labelled. U1 and U3, they’re both for urine. S2… that’s semen. Do it in number order.”
Good grief! Talk about throw a curveball at me. Normally these semen analysis tests are booked in advance. You rock up to the clinic with 5 days of abstinence. You’re physically and mentally prepared so to speak. After getting over the shock, I asked where I should perform such a test, to which she gave me a blank stare and pointed to the corridor… “toilets over there” she insisted.
To make matters worse, I’m now walking down a reasonably busy hospital corridor with a fairly big bright blue tray (which she insisted I take with me!), looking desperately for privacy. I hit my first destination, which was a small singular toilet off the corridor, by a waiting area for patients. As I get inside this cramped room, I easily managed the first pot. That was a piece of piss… (excuse the pun).
My thoughts now turn to the pot labelled ‘S’. I can literally hear people having conversations outside! I made multiple attempts to do this. The fear, the panic, the sheer horror of what I was doing overrode everything – I gave up, and left the room.
It was time to move along the corridor some more and find a second toilet. Hurrah! This one is further along, away from patients waiting around, and it was slightly bigger. I tried to get down to business, but was interrupted by somebody attempting to turn the handle of the door. I was in a living nightmare. Probably about half hour had passed and I was running out of ideas. How hard can this be?!
I left and I found a third toilet, this time even further away from the hustle and bustle! By this point I was starting to lose the feeling of awkwardness and I managed to relax a bit more. But just then, at that moment, my phone rings. “Are you still at the hospital, sir?”. It had been that long, they thought I’d gone home! Around an hour later, I sheepishly delivered all 3 pots to the nurses. I had my blood taken and then I got out of there pronto!
That’s an ordeal I don’t ever want to repeat. I think you quickly realise that these hospital staff have seen and heard it all. You’re quickly forgotten about as they navigate the endless line of patients. Whether it’s having invasive physical exams, performing planned (or unplanned) semen analysis tests, these are all part of a routine familiar to the medical staff. It’s like… you just accept it for what it is.
I feel like at this point, in around June 2023, I had lots of information about my diagnosis. I have CBAVD and it is obstructive. My testosterone levels came back normalk albeit lower than they would like. Other things like FSH levels (relating to hormones) were ok, karyotype testing was ok, and there were no signs of Y microdeletions.
This was all very consistent with obstructive azoopsermia where it is believed that the testes are operating normally. In theory, this means that there should be sperm which can be extracted for use in IVF. The doctor suggested that there was around a 80-95% chance of successful retrieval. Good news? Maybe. It’s all a whirlwind as now the next steps involve needles and/or scalpel to the balls. I’ll discuss more in my next blog.
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