This article on HIV-related erectile dysfunction was originally published in the December2002/January 2003 edition of “Talkabout”. Though possibly not as common a problem now as then, it is nonetheless still relevant! I don’t know that solutions have changed much, but they have certainly got cheaper! The end of the copyright on Viagra saw it drop in price from $80-$100 per script to a mere $10! 

When I first decided to write a piece on HIV related impotence, I thought to myself “Hey, this is a pretty serious subject, and maybe you should treat it that way.” However, a visit to a sexual health clinic changed my mind on taking it too seriously, so here is a more tongue-in-cheek view on coping with impotence.

Firstly, don’t go onto the Internet and hope to find any information. I visited all my regular, usually reliable sites, and found absolutely nothing. There is plenty just on general impotence, but nothing on the HIV related. As usual with a lot of the more ‘delicate’ subjects (let’s face it, nobody likes admitting that ‘they can’t get it up’, there is bugger all information. As usual with a lot of HIV-related problems, nobody thinks it is really important, or perhaps that given the right length of time, the problem will just go away. But as we all know by now, that isn’t necessarily the case.

Visiting a sexual health clinic on the advice of my doctor – and clutching a referral – did come as a bit of a surprise to me. I don’t know what I was expecting, but it seemed like the sort of place where you would tell people that you were Mr X, and you are just here to inquire for a friend who is having problems!

It wasn’t tucked away in a dark alley, nor was the impotency problem treated as something only related to very old men, nor just one of nature’s aberrations. It was treated like a serious medical problem, and perhaps this was the one huge realisation. There was almost a blasé flippancy associated with the consultation, which I wasn’t expecting! As to the real reasons for HIV related impotency. I’m probably no more an expert than the guys who are trying to assist those of us with this problem. Everyone does seem to agree that as people live longer and longer with HIV, it is becoming a more widespread problem, irrespective of your actual health status. The fact that there don’t seem to be any studies covering this area at the moment should be of some concern, as the one thing we can be relatively sure of is that the problem is not just related to HIV. Some experts think it is just a natural progression of advanced HIV disease; others see it as being a side-effect of combination therapy (plus all the other drugs needed to handle HIV); some think it is related to having had AIDS (if you have had AIDS); or that it is related to peripheral neuropathy, especially long-term PN. For some of us, it is a problem of having lived with HIV for 20 odd years, and getting older. My neurologist doesn’t seem to concur with the PN idea, but personally I know that it is a distinct possibility. If PN can affect the way I move and get around, if it can cause other sorts of neurological disorders, I see no reason why it could not be related to impotency. Let’s be real. Those of us who have lived with HIV for as long as the disease has been around, are still coming up with things that nobody had even considered, let alone know what to do with. And as we all know, we don’t usually fit into any of the general categories, and what happens with us, health wise, is often unexpected. So, it is a bit of ‘by guess or by God’ at the moment, in trying to pin down the causes of this type of impotency.

The clinician proceeded to ask me the usual questions – are you in a relationship? Yes! How does your partner feel about this? Well, pretty unimpressed! I don’t think anybody would be really happy with this problem, from either side of the fence! Have you considered an open relationship? Well, that helps his problem, but it doesn’t really help mine! It wouldn’t exactly be a situation where you could go home and compare notes later on about your trade! Have you considered using a cockring? Now, I don’t know about anyone else, but I always thought these gizmos were more about aesthetics than practicalities – you know, visual stimulation and all that (not to mention adding a sizeable amount to the actual dimensions of a cock), but here it was, out of the world of sex shops and mail order, and onto a clinician’s desk. Talk about taking the erotic appeal, and the mystique, out of an object! To be told that the good old studded leather contraptions are just not good enough for this sort of problem was very disheartening. Now as to the suggested alternative, well I have to say that perhaps we should go the way of eroticism instead of common sense. A very wide rubber band! Yes, you heard that right! I was given a sample to take home and try – or a ‘medically authorised’ cockring, which I have to say, still being the owner of black rubber and leather rings, left a lot to be desired. I could see the purpose to it, but God, was it ugly! A flesh-coloured ring with a small handle on each side of it, so that it can be stretched over the erect penis, it almost looked like some bizarre love-handled item, or perhaps a sighting feature for those who can’t aim straight!

There was also a plethora of information on ‘Viagra’ and ‘Cavaject’. Now, both these are good products, and anyone having used them as prescribed will attest to this. However, there are drawbacks. ‘Viagra’ is not on the PBS, and at $55+ for 4 tablets, is very expensive if you are on a pension (this us no longer accurate. The copyright on Viagra expired a few years ago, and it is very cheap). You also have to be careful with it if you are on protease inhibitors. If you buy the larger size tablets, you will need a tablet cutter to split them, as they are very hard to break. But perhaps their biggest drawback is that you have to – sort of – plan your sex life, which kills any hopes of spontaneity with sex. It takes anywhere from 30-60 minutes to work (depending on your metabolism), and once you’ve taken it, you’d better hope your partners still in the mood when it kicks in; or that there are plenty of available partners; or that everyone doesn’t suddenly change their mind, and go back to sleep, because if that happens, there goes $15 down the drain! On the upside, if your partner is in the mood, you are about to give them one hell of a good time, but there is always that element of the unexpected. And waiting can be frustrating. It’s fine to tell your partner that you have just taken the tablet, but if he is ready to get into it after 20 minutes of foreplay, you could be left well behind in the stakes. Unfortunately for some of us, headaches are a side-effect of Viagra…so the sex had better be worth it!

Similarly, problems exist for ‘Cavaject’, though initially, it works a lot quicker than ‘Viagra’, being injected directly into the penis. If you are needle-shy, forget this! You probably also don’t want to see the video the sexual health clinics give to help you decide. To start with, they use a female doctor in it. Now, don’t get me wrong! I know female doctors are every bit as good as male! It is just disconcerting that in a scenario where it is a male problem being discussed with men, it is slightly off-putting to see this poor guy in the video stretching his penis out, holding it as though it is about to spit poison, then aiming a needle at it as a female voice in the background goes ‘Very good. You are going well’. The fact that she looks a bit like everybody’s mother probably doesn’t help, either (no offence to whoever she is). Now, if this doesn’t put you off, the price, and the procedure, probably will. I managed to do a bit of stockpiling just before it went off the PBS, thankfully. It went from $3.50 for 5 injections to $80+ overnight. Again, you wouldn’t want to be wasting it on frivolous events. It does have the added plus, as I mentioned earlier, of working instantly. And boy, when it works, it works! We are talking rock hard to the point of impressive here! However, just make sure that you don’t hit any veins or capillaries on the way in, as a gusher of blood can be a bit of a passion killer. They show you how it is done to avoid this, but as with all things, we weren’t all cut from the same pattern. You also have to be careful with the needle, as you can get a bruise from a misplaced shot (or perhaps an over-eager shot!). It is a simple procedure, and it really doesn’t hurt, though I encountered a slight stinging for a few seconds just after the initial injection. I had a sexual encounter with a guy – in his home – prior to this revelation. I was already rearing to go…when he suddenly disappeared…only to return a couple of minutes later sporting a very impressinly hard erection! It is only now that I realise what he was doing.

I’m also sure that a lot of you HIV guys are now familiar with regular injections of ‘Sustenon’, a testosterone topper-upper. It is very effective if you have depleted testosterone levels, but doesn’t serve much purpose if you fall into the normal reading range, and your impotency is caused by other factors. ‘Sustenon’ is not cheap either, being in the $30+ range. I think this is a major concern with ‘Viagra’, ‘Cavaject’ and ‘Sustenon’, in that now, none of them are available on the PBS (unless, in the case of ‘Sustenon’, you can show depleted levels of hormone). Okay, if you are a vain person with no medical problems, and you just want to show off your sexual prowess, then you should have to pay for these products! However, when the PBS definitions and classifications of uses for ‘Viagra’ and ‘Sustenon’ went through reclassification, HIV disease was NOT defined as a reason for being able to have them prescribed. The definitions have never changed, despite research that shows these are problems often associated with HIV. So, to be HIV+, and to want a healthy, normal sex life means you have to pay through the nose. If you are on a pension, consider joining a monastery! The choice is 4 or 5 ecstatic sexual encounters, or starvation. On second thoughts, I may have to think about that!

Now, this brings me back to the brochure I walked home with after that little visit to the clinic. Not only pictures and order-form for a natty little injection kit for ‘Cavaject’, and the love-handle cockring, but also a vacuum pump. Now, last time I saw one of these items – and it was recently – was on an ‘adult only’ site (you know the sort I mean! The ones that require adult verification!), and the use it was being put to was not medical. Hell, when I used to manage ‘Numbers’ Bookshop (a lifetime ago), these were amongst my best selling items – from the cheapest, through to the elite models. I have to say that on this particular site I was on, they did show budget-wise reasons for using this devise, as two guys were using it at the same time. You could time-share with a friend I guess, but the fact of both of you wanting sex with different people at the same time is probably pretty remote, so it probably isn’t convenient to do it this way. I can see that they have a certain erotic appeal, and would probably be fun as foreplay, but imagine the extreme situations that could possibly occur. Over-pumping to start with, or getting the old boy stuck! Try explaining that in A&E, let alone telling them that you bought it through a medical catalogue.

Though, ideally, I don’t see any of these things – apart, perhaps, from ‘Viagra’ – as totally expedient ways of overcoming impotency, it is a ‘different strokes for different folks’ scenario, and in a lot of cases, doing something is better than doing nothing. We’d all like a reasonable sex-life, and if it means going to some sort of extreme, I guess most of us would be willing to swallow a little pride, and use whatever props we have to. On the upside, on ACA a couple of weeks ago, there was a story about this guy who has been successfully trialling a capsule that dissolves under your tongue, and guarantees pretty quick results. I did ask my pharmacist about this, and he claims it will probably be a couple of years before it is available. I say let’s try and get on the trial!

In the meantime, I guess we are going to have to either scrape up the money to go down the ‘Sustenon’/’Viagra’/’Cavaject’ road, or stock up on appliances. Whichever way we choose, as HIV+ people we are used to being creative, and I’m sure our imaginations won’t let us down in the sex department.

Go for it, people!

If all else fails, there is always this alternative…

Tim Alderman © 2002 (Revised 2017)