azoospermia - wtf?

Thursday, May 31, 2007

So much has happened...


It's been more than 6 months since my last post.

Since then, I've had three months' worth of counselling, and we're now on the path to becoming adopters. I'll try and re-cap as best I can.

December 2006 to March 2007
I had a bit of a breakdown in early December. Basically, I questioned the whole point of my existence, and attempted to commit suicide. It was a pretty low point in my life.

It may not be surprising that my wife and I had a serious heart-to-heart. In that episode, I realised that the whole infertility thing was affecting me far more than I had probably let on. I believed that I had exorcised my issues by writing this blog, and that everything was hunky dory. Clearly I was delusional.

My wife's colleague gave us the name and number of a Psychotherapist with whom she had trained. I have considered counselling before, and isn't it ironic that a Psychology graduate should have problems managing mental issues? Like I've told my wife on numerous occasions, and other people who learn that I have a Bachelor's degree in Psychology, I'm not a therapist, and my degree didn't prepare me to be one.

Perhaps my biggest obstacle is that I feel I should be able to sort out my own problems. Call it pride or whatever, but to seek the help and guidance of a therapist is tantamount to admitting mental weakness. But with this episode, I really scared myself, and it's not everyday that you learn that you are infertile. So I called, and arranged my first appointment.

I honestly didn't know what to expect. We talked about the circumstances leading to my 'episode', and then about my feelings of infertility. It's very strange talking about very personal things with a complete stranger, yet I remember feeling very positive and refreshed afterward, like I had lifted a great weight off my shoulders. I was noticeably happier.

I met weekly with the therapist for counselling weekly thereafter, skipping a few weeks here and there due to Christmas and my work commitments (oh and a period of snowy weather). But it really helped me discover some of the root causes of my feelings. It even led to a confrontation with my Father, which was unexpected, but empowering, and has created a more evenly weighted relationship between us. It has led me to be more open with my wife, and to cherish her more dearly; indeed to try and lighten up and live a little, and not take things so seriously (but it's a work in progress, just ask the Mrs.!). I think I can persevere with that.

Sunday, November 19, 2006

Sperm Retrieval - Post-op Recovery

I spent the next few days after my op off-sick (woohoo, time away from work!) I was advised to rest, no driving, no lifting. (Following the op, on the drive home, I did find it a bit uncomfortable, so there wasn't any chance that I'd be driving myself anywhere soon.)

The Mrs took a couple of days off to look after me. I can be a stubborn patient, but she did take it to some next level (for instance, she wouldn't allow me to carry anything.) She assisted with my twice-daily 5 minute baths, but she couldn't bring herself to look at the wound for the first day or so (admittedly it wasn't pretty.) I had no information on how many days I should be bathing, but I carried on with it for five or six days after the op.

My wife was incredibly angry with me at going through with the procedure. But I had to. Of course I had my doubts whether it was worth it, but I had to know for sure that there was nothing going on, and to be certain that I had tried everything medically possible.

Since the results were negative, I'm glad that we had already decided a few days before the procedure that we would follow the adoption route if this was true. I'm glad that we had discussed this, since it made our post-op decision much easier and quicker.

I know that for others in our situation, having a biological child with at least one person involved in the process is desirable. It was actually the Mrs who convinced me to think that adoption was our preferred option. Her argument was forceful: if only one of use could be involved in the process, it would be unfair to the other who couldn't. By adopting, we're in the same boat - neither of us is biologically involved.

Friday, November 17, 2006

Sperm Retrieval - Op Day

I was a bit annoyed with the apparent tardiness of the way the clinic operated.

As a paying patient, you expect a little bit of customer service. Although we had agreed the date for SSR, I only received the confirmation letter a few days before the op. I did chase them, but this coincided with the day that they sent me the letter, and apparently the lady responsible for informing me had been on leave, but I was still a bit peeved. I thought "If they can't even do a simple thing like this, do I really want to let them cut me open?" Plus the fact that I would be paying for the privilege.

Of course, it isn't the admin who do the operation, but I was nervous enough about it that I wanted all the necessary paperwork in good time.

Anyway, the morning of the op, the final countdown.

We had to arrive fairly early at the clinic (7:30am), so we tried to get to sleep earlier than usual the night before. I think I slept well, at least as well as somebody can before an op (the thought of GA had me a little worried, but I kept telling myself "If I go, I will go peacefully, so think peaceful, happy thoughts". So I did.)

The Andrologist had outlined what I needed in preparation for the op, basically abstain from alcohol, no hot baths, loose underwear. Abstaining from alcohol was really difficult: it would have been nice to have a few beers (and maybe something stronger?) to relieve the stress of the whole situation. I also chose to abstain from any sexual activity before the op, I figured I may as well try and leave something in there to make it easier.

Items I needed for the op day: tight underpants, dressing gown, slippers. Naturally, I had to fast from midnight (no problem) and no water from 5:30am onwards (a bit harder.)

At the clinic, we reported directly to outpatients, and were shown to what I can only describe as a ward (I was expecting a small, single bedded room, but had a room to myself of about 6 beds!) I handed my consent form to the nurse who met us, a lovely lady (sweetly, she pointed out a woodpecker to us that was on the lawn outside the window - I haven't seen too many of them in my lifetime, so it was pretty cool.)

After being weighed (a little heavier than I reckoned) and having my blood pressure taken (bp fine, pulse a bit high at 63bpm, although the nurse said I seemed quite chilled - but a few years ago, admittedly when I was fitter, I had my bpm down to the high 40s), we were left to witter some time away. I don't remember exactly what we talked about, I think we just tried to keep cool, and read some magazines. I was trying to keep calm for us both, and I remember thinking "I love this woman", and "I hope I don't die" (melodramatic I know!)

I had a chat with the Andrologist, he basically went through what would happen with the procedure, the odds of finding any sperm and how to manage the wound post-op (two-daily salty water or Dettol or Savlon baths of 5 minutes, he didn't say for how many days - we opted for Savlon baths in the end.) Reassuringly he said "See you after the operation", which was nice.

Next I went through some routine questions with the anaesthetist; I had pretty much answered these with the nurse previously (had I had anything to eat or drink since midnight, had I had GA before, etc.), but I suppose it's probably the protocol (I'm no clinician.) He seemed a nice enough chap.

Finally, I went through some more questions with the nurse who would be assisting the anaesthetist, very similar questions (how many times can you answer "No" to whether you've eaten anything since midnight?) She put on my patient identifier (read: wrist strap) after double checking with me my details. Then she left me to undress and put on the patient gown. I understood then why I needed the slippers and dressing gown.

Eventually, the anaesthetist nurse came and walked me to the operating theatre. I thought it would be a fair old walk away, but was actually on the same level as the ward, no more than about a 50 foot walk (now I felt a bit peeved that I'd bought a dressing gown especially for this, I had to take it and the slippers off anyway!)

[The next part of the post is at a bit of a tangent - skip it if you want, you'll see where to continue.]

Having been around hospitals as a kid (my dad was a community nurse, specialising in mental health before entering management: he would take me and my sister to open days, and I remember him taking me to a Christmas do for patients when I was very young) they don't bother me that much. There is that smell of disinfectant that always seems to linger on your clothing when you visit, which is kind of comforting for me (my mum is a nurse too, so with my mum and dad's work clothes smelling of hospital in the home, I made a strange association with that smell.) I've also spent summers working at the local psychiatric and general hospitals (I actually had intentions whilst studying for my Bachelor's degree to become a clinical psychologist, but my experience at the psychiatric hospital put me off.)

What does bother me are my memories of my appendectomy when I was younger. I had to have an emergency appendectomy, the night before my 14th birthday, mainly because my idiot GP mis-diagnosed that I had an infected appendicitis (luckily I had a different GP who made the correct diagnosis and arranged for my emergency admission.) Now the initial operation itself was fine, I was very lucky as apparently my appendix was close to rupturing. The next day I seemed ok (I had an appetite, and ate some food.) It was my 14th birthday after all, and I even stomached some cake. But later that evening something seemed wrong, and I started vomiting. I developed a fever over the next few days, everything that I ate, I either puked up or poohed out (on one occasion I needed the bed pan AND a sick pan at the same time.)

Anyhow, gradually things got worse, and after a few bouts of puking bile (yes, the stuff that is supposed to digest your food in your stomach), they x-rayed me and diagnosed adhesions of the gut. Apparently, I was only the second case that my Senior Registrar had come across in his career to that date, so I guess that I am blessed (or cursed?) with unusual medical conditions.

The only way to help me out would be a second operation to separate the adhesions. Until that time I had to have a nasal gastric tube, and was only allowed 10mls of water a day. You can imagine in that time that I lost a lot of weight; my mother reminded me recently that my sister, after she had visited me said that she didn't want to go back to the hospital because I looked that ill (I suppose the nasal gastric tube added to the drama.) I had a couple of school friends visit me too, which I found very touching, and it annoys me that I haven't made more of an effort to keep in touch with them.

Well, I had the second operation where they removed a section of my gut (about a foot I think), but in the process they had to split me open (well, not quite literally, but they sliced down from just above my belly button through to the bladder area), since my original appendectomy wound wasn't large enough (but it was nice that they were thoughtful to try.) And so I was on my feeding drip before getting strong enough for them to release me (I say strong relatively: on my first visit to the boy's room, I nearly fell over in shock at my reflection because I couldn't recognise myself, I was so emaciated.) It took me a few months to get back to anything resembling my previous weight: I remember thinking that I looked like a malnourished Ethiopian (this was about the time of all the media coverage of the famine in Ethiopia.)

[End of tangent.]

I was quite surprised by the number of staff present. I hadn't imagined that the procedure would require that many people. A bit scary if I'm honest, as I only recognised the Andrologist, the anaesthetist, and the anaesthetist nurse. When they're wearing those theatre greens and caps, it's so hard to recognise people.

The anaesthetist nurse sat me on what I imagine was the operating couch. I'll be honest, it had the leg things that you'd expect on an Obs/Gynae consultant's examining couch, which felt a bit weird.

When I lay down, she attached heart monitoring pads, and clipped a pulse monitor to my left index finger. Next a couple of other nurses put socks on me; we had a little chuckle since they were lovely white with red hearts (the other option were pure pink ones.) I politely asked them to take them off post-op. Meanwhile the anaesthetist nurse put a mask on me (for oxygen, apparently.)

The anaesthetist inserted a canula into the back of my left hand, and injected the anaesthetic (I'd forgotten from my past experience how uncomfortable it actually is, like a cold tingling as the chemicals seep into your bloodstream.) As I started to drift off, I just let myself go, trying to think calm, happy thoughts, and wondering if it wouldn't be a nice idea if they put a colourful artwork on the ceiling for patients to look at whilst they drift away?

The next thing I know, I'm back in the 'ward', drifting slowly back into consciousness, muttering "I can't remember what it was about, but I had a really nice dream, I can't remember what it was about, but I had a really nice dream, I can't remember what it was but I had a really nice dream." I half expected a sharp, horrible pain down below, but to be honest it was pleasantly numb. They had injected me with a pretty strong antibiotic and given me a pain-killing suppository. Perhaps not so surprising that I didn't feel anything.
The Mrs was sat beside the bed, holding my hand.

Of course, I had to check 'down below', interestingly they had put an athletic support on me, and there was a fair amount of gauze and padding. A lot of blood, but as I said, I couldn't feel anything, pluse I was still a bit woozy from the GA. The Mrs couldn't look, she's a bit of a wuss when it comes to wounds and stuff.

Another nurse came in, and asked me how I felt, whether I felt ready to drink or eat anything. Of course I was (hey, I'm a guy), so she brought me a cup of tea and a ham sandwich (it was that or a cheese pickle sandwich, yuck!). I didn't actually feel hungry, probably the numbness from the GA and the pain-killing suppository, but I scoffed it all anyhow.

Some time later (I'm not exactly sure how much later, the effects of the GA had also numbed my ability to estimate how much time had lapsed), the Andrologist came in. He asked how I felt, I stated the obvious "A bit woozy". Next the dealbreaker.

They had done a preliminary examination of the tissue they'd extracted, and there was no presence of any sperm. Not good. They would obviously do more pathology tests, but to be honest, I knew that it was a bit pointless.

The Andrologist told me that he would call me the following day to confirm the results, and took my numbers (I didn't get the phone call.)

How did I react to this information? Actually relief, albeit tinged with some sadness. I had a conclusion, an ending to this chapter. We could move forward.

Sperm Retrieval - The Pre-op Consultation

Well, we had our consultation with the Andrologist at the IVF clinic, as planned.

Having never visited an IVF clinic before, I was, to be honest, a little anxious. I thought that it would be like a typical private hospital: clean and functional in design. I was wrong.

The clinic we were referred to is a beautiful old manor house. At first, it was a little confusing finding the entrance to reception; we found an intimidating wooden door which I wasn't convinced was the entrance to the main building, until we saw somebody come out of it!

It did seem nice to be in such 'homely' surroundings (we both thought the building was lovely), but I think we were both a little nervous. We signed in, got our visitor passes, and were shown the way to outpatients, where we were to see the Andrologist.

Now, I don't know if this is a common experience - perhaps we have come to terms with our infertility better than we expected - but we found the atmosphere in the waiting room quite depressing.

My wife feels that sometimes there is such an expectation on having children, that finding that you are infertile, for whatever reason, can have a devastating effect. Of course, being infertile is not a jovial matter, but I don't think it should mean that you lose all sense of happiness or optimism. Maybe we were feeling a bit manic, but I just wished that some of the other people waiting would lighten up.

Finally it was our turn to see the consultant. He seemed a nice man, authoritative in an unassuming way, and went through a number of questions, pretty much re-hashing stuff that we'd already spoken about with the Obs/Gynae consultant. After examination, and a short discussion, he suggested that our next step should be to try to retrieve sperm from me by surgery (SSR - Surgical Sperm Retrieval), the outcome which would be 50/50 (hey, 50% is better than 0%.) Lucky me, the opportunity for an elective procedure under general anaesthetic: I even had a choice of surgery dates (I plumped for November 1st.)

First, I would have to have bloods taken to screen for HIV, Hepatitis B (and something else?), also Inhibin B and Y-chromosome deletion to see if these would show any genetic causality. Because we were self-paying patients, the Andrologist gave us a sheet with all the chargeable items ticked, a nice reminder that this was as much a business as a medical 'service'. (It makes you appreciate how much healthcare can really cost; I think that all NHS patients should be shown the real costs incurred when treating them, it might stop people whingeing about the essentially free service.)

I'm pretty tired of having bloods taken (when I was younger, I had adhesions following appendectomy, and basically had to be drip fed a specially prepared concoction of vitamins, minerals and fats, which required they check the levels of these compounds in my blood morning and evening so that they could adjust the quantities they 'fed' me), but irritatingly I had to wait a fair while before a nurse could get around to taking them. Apparently it was because the Inhibin B test wasn't commonly done (the Andrologist had to add this on to the list of chargeable items) so they had to find the right tube. Great.

So, we finish, we pay and sign out (we were undercharged, but I reassured the Mrs that they would pick this up, she wasn't convinced - she is very honest after all.) And then the heated discussions began.

Basically, my wife didn't want me to go through with it. She felt that it was a pointless exercise, and the fact that it was a GA procedure scared her (she had nearly lost her sister to a procedure under GA.) I didn't initially have a problem with the GA part, but I was a little anxious, thanks in part to her worrying.

Nonetheless, I insisted that I wanted to proceed: I wanted to do this as much to have a final answer, if you like, my scientific curiosity aroused. And in all honesty, I wanted to do this to help me make a decision on what to do next.

Tuesday, October 17, 2006

The Next Step

In my previous post I talked about getting an appointment at the local fertility clinic.

Well, we got the appointment letter and pack within a week of seeing our obs/gynae consultant. I found this quite impressive; but remember that I'm used to the snail's pace of the NHS, so to get an appointment sorted in less than a month is, to me, quite impressive.

Cutting to the chase: I will be meeting an Andrologist at the clinic this week (Wednesday 18th October) to discuss in more detail the procedure for determining whether my testes are producing sperm or not. From what I can recall in the letter, I think that I will have to provide further blood samples, which the clinic can arrange to collect, or that I can arrange elsewhere (read: NHS.)

Now I don't know how common this is, but the wife and I continue to debate how we want to proceed. I realise that I am probably more keen to find out if my testes are functioning, no matter how much effort is required to extract sperm. In my mind, this will dictate which path to take.

We have, however, agreed that if a child born to us via ICSI is likely to be disabled, that we probably would not proceed with IVF. I expect that we might be criticised for this, and I don't know that my blog is the right place to start debating the moral implications of such a delicate issue. But, as my wife continues to remind me: 1) in the past, we wouldn't have had the option of such a procedure; 2) maybe there is a reason why we're infertile.

I know that the donor route is another possibility, but there are a bundle of other issues related to this. We obviously would need to investigate this route, but as I mentioned before, the odds of finding a matching donor is probably low; I don't know if the UK has access to donor lists abroad, but that would help.

Perhaps my infertility is somebody's way of telling us that we have a duty to helping other children. I know I've mentioned it before, but there are plenty of kids out there who need a little help and a loving family.

I suppose we're just trying to be realistic, and not building our hopes up too high. It really does make you re-assess what is of importance to you in life.

Not the most regular blogger...

You may have noticed that my blog updates are sporadic to say the least.

1) I have access to the Internet at home, but I don't use it, because I haven't quite got my wireless modem/router working, and it is a pain in the butt moving all the PC gear around so that I can hook it up using wires (you try lugging a tower desktop case up and down stairs! We will be getting a laptop when the time comes to replace the current system!);
2) As a result, I update my blog during my working day, and obviously being the conscientious, law-abiding employee, I don't like to do this too often;
3) I am a perfectionist, and like to make sure that what I write reads nicely.

I hope this makes sense.

Tuesday, September 26, 2006

The follow-up consultation

So last week, my wife and I visited the obs/gynae consultant for our follow-up appointment. It took an e-mail and a couple of phone calls to arrange this consultation - I think his secretary was either incredibly busy or away on vacation. (This is how keen we were to get a follow-up appointment: I even visited my GP a couple of weeks earlier to see if she could sort something out, but coincidentally I got a call from the consultant's secretary that same morning, so it was all good.)

Anyway, he went through the results as he'd discussed in the letter to me. And then he suggested that we had two options, both involving assisted conception. Either a) extract sperm from the larger of my testes (assuming that anything is happening down there) or b) donor sperm.

Now given my ethnic background, and the fact that the number of sperm donors in the UK is decreasing (thanks to the Government passing a law that children born from donor sperm can seek out their biological father at the age of 18 - no more 'anonymous' donations), the consultant suggested that, even with a 1 in 5 chance of extracting any sperm that I may be producing, that it would be worth going down the extraction route.

I have a colleague at work whose sister recently gave birth to a girl conceived via IVF. My colleague told me that her sister had had two cycles of IVF, at a cost of £5,000 a time. So £10,000 in all. (I'm sure I've read somewhere that two or three IVF cycles is common.)

For a lot of people, £10,000 is pretty substantial money. Now, it was recommend by John Reid, whilst he was the Health Secretary, that couples seeking IVF on the NHS should have at least one cycle provided free. But, if you read the papers or watch the news on TV, you'll know that the NHS is going through a bit of a financial crisis right now. So I guess that this is all pie in the sky - it doesn't help either that there is a postcode lottery as to whether you'll get any such treatment (it's all down to the way the NHS is managed regionally - let's just say it's fairly complex, and probably doesn't make a lot of sense to most of us.)

I remember reading an article, or hearing on the radio, a suggestion that the Government should fully fund IVF, because if the child lives to working age, and works until retirement (currently 65 years old), the amount that that person would repay in taxes would more than repay the 'investment' in IVF. I've had arguments with people that this is entirely sensible, given the relatively small number of couples seeking IVF. (In the bigger scheme of things, how much is the Government spending on military activity and international aid? Sorry, I'm getting political now...)

But I digress. Our consultant has written to a specialist at the local fertility clinic, so we should be hearing from him soon. Hopefully, he'll be able to discuss with us further the probability of extracting sperm, and all the other relevant details. We await the appointment letter.

Thursday, September 14, 2006

Are kids worth it?

My wife alerted me to this interesting, perhaps outrageous, article on MSN Money UK.

The author presents a number of reasons why having a kid is a waste of time and money.

Now, given our situation, you might think that I should dismiss this article outright, as a blasphemy against the joy of having and raising a child. But, I like to think that I am an open-minded, fairly rational individual.

The arguments presented are, from a financial viewpoint, compelling. After all, it does cost a heap to raise a child, and there is no guarantee that you will get a return on your 'investment'. And, unlike in bygone days, there is no real economic gain from having a child.

But I think he misses a point. You don't have kids because you want to benefit in your old age from them taking care of you. You don't spend money on them, because you expect some kind of payback.

As my Dad always points out, no matter what I do, or how old I am, he and Mum will always see me as their baby. If you love your child, you will help them out, no matter the burdens, financial or otherwise.

I know that there are couples out there who choose not to have children. Sometimes I get annoyed if I know that they could have kids, and I think that they're wasting such a great gift. But on the other hand, if they have each other, and they're happy just being the two of them, then that's great too.

In a way, I wish it could be that we could choose not to have kids - not because of my 'defect'.

Thursday, August 31, 2006

Couples losing out in NHS infertility treatment lottery

Back from Hols - Results Through!

The Mrs and I took a week off to have rest and relax. It's nice to get away, but, I'm sure you'll agree, with long-distance overseas trips, the negatives are jet-lag and picking up bugs on the plane (I have a nice cold now, boo hoo!)

Anyhow, as with any period of time away from home, there was a pile of mail to sift through on our return. Amongst the items of junk mail, mail for the previous tenants (we feel like we're a free version of the Royal Mail re-direction service, grrrrrrrrrr...), there was a letter from the consultant (as well as invoices from the BUPA hospital and the blood test centre - which I've forwarded to my medical insurer to sort out!)

The letter was fairly brief, a short statement reading:

"Dear [Me]

I now have the results of all the tests that I arranged for you and your wife.

I am pleased to say that your genetic makeup is normal and you do not carry the mutations for the commonly occurring causes of cystic fibrosis.

With kind regards.


Interestingly, I had no idea that this is what he was testing for. It's reassuring to know that my genetic makeup is normal, but I don't know what this means in terms of the avenues that are open to us regarding fertility treatment.

I have e-mailed the consultant to ask for a follow-up appointment. Frustratingly, there was no mention of this in the letter, so it begs the question how these guys operate - I would have thought he'd be glad for the extra cash (£130 for a 20-30min consultation sounds like a good gig to me!) Don't worry, I'll be calling his office soon.

Random muttering: We've swung from thinking that kids are the be-all and end-all, to wanting a dog, to wanting kids, to thinking they're a pain in the butt. The worry is that if we do eventually have children, that we'd spoil them too much (and I've met kids born to infertile couples who fit this description), but that's neither here nor there right now.