On Transverse Myelitis and Sex

This is the chapter called 'Sex', from my book: "Taking Charge" - which follows my journey from the first perplexing minutes of pain and loss of control of my legs, through to some sort of acceptance. You can read the whole book by purchasing 'Taking Charge' in a printed format (A$13+p&p) or a downloadable pdf (A$10), both from:

http://www.familyconcernpublishing.com.au

Anyway, let me warn you that this chapter is explicit. If it begins to offend you, please stop reading and go and do something nice for yourself...

Physical limits

Will never get in the way

Of my love for you

OK, this is another topic that you probably don’t talk much about in society, but it becomes a major problem when you have a spinal injury, and for us blokes it becomes an obsession.

You may or may not be able to imagine the relief that occurs when you have your first erection after a spinal injury. It may only be a pale memory of what you could achieve before, something about the size of a large thumb (alright a large thumb on a medium to large man), and you may not have sensed it directly. So you don’t wake up thinking “Ooh wow, that’s an erection”. There is an odd, vague, unfamiliar feeling down there, and you reach down to rearrange your PJs and almost by accident discover this thing that you otherwise can barely feel. You smile (actually several times…), and check it again (actually several times…). Of course it fades, but you still smile at the memory. Then of course you have a problem; actually several problems… Supposing it doesn’t happen again? Do you tell anyone? So, do you get all excited and tell your spouse that all will be well in that department after you leave hospital, and perhaps raise expectations that may not be fulfilled? Do you tell your mates (without of course revealing the size of the thing)? Do you tell your doctors? “I seem to have better control over my waterworks and, just in passing, I seem to have had a small erection”. Are your doctors likely to be interested in such things? Well of course they are, because it is a sign of recovery of the automatic pathways; a sign that spinal shock may be passing. I must admit I waited several weeks before telling anyone… Partly because I wasn’t sure I hadn’t dreamt it, partly because no-one asked directly and also because, well, it’s a private matter, isn’t it?

The first thing to say is that the erection may be of two possible origins. It may just be the outcome of a spinal reflex. That is you were sleeping on your tummy to avoid bedsores, and your pyjama pants got twisted and rubbed in the right (or wrong) place and the friction led to a small tumescence (what a great word). It is good news. It may flag that you will be able to have intercourse in the future, although it does not yet say much about enjoyment, orgasm or ejaculation.

The second origin of the erection is that you may have been having a dream with some fantasies of physical or sexual contact. If this is true, then it is very good news. What it may tell you is that the thoughts were translated into impulses in your brain that were able to get down through the pathways in the spinal cord, and influence the nerves in the much lower level spinal reflex. Think of it as a long spoon reaching down through your spinal cord to stir the sediment at the bottom of the glass. What this may mean is that ultimately you will get more enjoyment from sexual activity, you may be able to orgasm more freely, and you may reach the point of ejaculation more easily. Of course the thinking bit can be a two-edged sword. If your thoughts are distracted, if you are tired or worried, if you are having emotional problems with your partner, then the psychological impact may inhibit any spinal reflex and reduce the likelihood of a sustained and satisfying erection during love-making.

Anyway, I wasn’t sure whether I had been dreaming or what the content may have been. I was curious that nothing had occurred for about the first four weeks (for three of which I had had a catheter in place, and the next few days had been struggling to get some control over my waterworks after the catheter had been removed). I guess that was related to ‘spinal shock. I was really pleased the mini erection had occurred, but I reflected that I was extra pleased it had not occurred while I had an indwelling catheter for my bladder; that might have been very uncomfortable. I was also happy it did not occur when nursing staff were changing the catheters; that would have been embarrassing for them and for me.

Anyway, I kept quiet, and waited. About a week later I had a second morning erection almost twice the size of the first. I still could not actually feel it; there was just a fullness to the point of discomfort in my PJs. When I touched it initially there was no touch sensation in the shaft except, strangely, I could feel the warmth from my hand. There was no local excitement, and no apparent need for release. It was just there. It lasted about 10 minutes or so without any further contact or encouragement. I suppose as a male I was delighted and extra relieved (because it was some proof that my body might recover, and I have always enjoyed my sexuality), but as a doctor I was observing in an almost clinical way (I just wanted to see what happened, what the process was). Either way I smiled again (and again). I was pretty sure I had not been dreaming, and certain I had not been fantasising (I was too bloody depressed about my paralysed legs to do much of that). So I reasoned that this was a reflex erection – good sign but not yet the best of signs. I could be optimistic, but not ecstatic, about the future with Jan.

Shortly after this I was transferred to the specialist spinal injuries unit, and of course prior to transfer had several examinations of sensation (light touch, pin prick, temperature, joint position sense, and vibration sense), to help develop a discharge report. No-one asked about erections, so I kept quiet. After arrival at the spinal injuries unit, I had a further (and overall the most thorough) appraisal of both sensation and power. This contributed to an ASIA scaling (something I had not previously come across (or had discussed with me) in the general hospital). The American Spinal Injury Assessment (which can be downloaded from http://www.asia-spinalinjury.org/elearning/ASIA_ISCOS_high.pdf) examines every muscle group, and every dermatome (an area of skin supplied by a set of nerves from one spinal cord level), and then charts the whole thing on a single piece of paper.

In some ways, the most uncomfortable bit of this was testing sensation around the anus and scrotum - with a piece of cotton wool or a blunt object to get the light touch, or a needle to get the pin prick. Apart from general embarrassment, and also worrying that I might pass wind or something else during the examination, I had been suffering some hypersensitivity to touch, a sort of burning feeling when touched. This translated to an over-reaction to the pin prick – very painful, even when carefully done (which it was). Anyway the examination was completed without windy mishap, and the chart provided a very complete picture of my handicaps. It helped me overall to know specifically what I had to work on to try to improve power, balance and sensation. It also provided a very gratifying contrast when it was repeated four weeks later just before my discharge from the spinal unit; I could actually see on the chart where I had improved, but also see where there was still a lot of work to do.

As part of my belief about taking charge, I asked for copies of my ASIA assessments to take home, and from time to time (especially when I am having a down day, I can look at the charts to see visible proof of my improvements. It has also been helpful to have copies to give to professionals involved in my care in the community since my discharge. You can never quite trust that these communications occur, even with the best of intentions from hospital based professionals. Get as much paperwork as you can, and make copies yourself to take along for interviews and assessments.

Actually I discovered a strange anomaly when I asked for copies. Not only did I get the two assessment charts from the spinal unit, but also a third chart appeared – a much earlier one from about 3-4 weeks after admission to the general hospital. No-one had discussed this with me, and I certainly never saw copies while in hospital. Strangely, I cannot remember the supposedly very detailed examination that preceded completion of this early chart. I am, however, utterly certain that no-one tested sensation around my scrotum and anus. I can also say that in retrospect, much of the chart was not quite right, and exaggerated my improvements (I am sure not deliberately) so it then looked like I had deteriorated between the hospital and the spinal unit – which of course was not true. I guess someone had done a lot of guesstimating…

In all of these assessments there was no specific questioning to do with sexuality and, on reflection, this is a bit strange given the importance of the topic, and the need for reassurance. Yet, there is also an ASIA scale for sexuality. I guess other professionals may be just as embarrassed as I had been. Certainly, my physio who did the follow-up assessment was somewhat embarrassed. She was extremely careful and thorough, but when she got to the nether region bit, she muttered something about it being the job of the doctors.

So it came as a shock one night just before discharge from the spinal unit to have my self-proclaimed special nurse turn up at the bedside and, after a light social chat, dive into ‘questions that had not been asked’. She began with detailed questions about waterworks and bowels before moving on. This helped the initial embarrassment on both sides, I suppose. OK, she is a nurse and therefore professional, but I had never discussed sexuality with anyone from the point of view of being a patient. In particular I had never discussed my sexuality in graphic detail with an attractive young woman at 10 o’clock at night in the semi-gloom, knowing that my three room-mates might well be listening. I did not know whether they had been through this type of conversation, and was not absolutely sure it was standard practice; I just had to accept it was. “Had I experienced an erection in the last few weeks since the spinal damage?” Well yes, on about three occasions. “Could I describe what they were like?” So I did – in graphic detail. “Had I actually reached orgasm?” Well, no, I actually had not tried; to tell you the truth there was not much to work with (brief laughter), and very little skin sensation. “Had I had a nocturnal emission?” (what a wonderful phrase). Well, no I did not appear to have had any leakage, and had certainly not ejaculated (mores the pity!). “Had there been problems prior to the spinal whatever it was?” Well certainly from time to time there had been (shall we say) a certain reluctance to get totally awake. But I had decided this might in part be the result of waning of the male hormone testosterone that occurs naturally with aging.

I have never had a formal test, but had some other signs that this might be true (softening of facial hair, loss of body hair, a certain tiredness). Doctors in their private lives rarely do things properly, so please don’t do what I did! I would advise anyone who wants to follow my path to do it properly and go and see a specialist. Being me (slightly arrogant to others’ perceptions probably) I had read extensively, and had checked out the Internet (of course). I discovered that you could access one of the chemicals known to be a building block for testosterone (the testosterone precursor, di-hydro-epi-androsterone or DHEA). It was almost an accident. Doing Karate very actively into my 60s, I have always tried to be aware of just how far to push my body, but equally I have always been anxious to avoid joint problems. I came across several articles, and then a video, extolling the virtue of DHEA for aging athletes – improving energy, and specifically protecting muscles and joints – in part through assisting the creation of testosterone which is active in these areas. I tried it for that reason, but also hoped it might stop me ‘flagging’ at crucial moments. I would say it has helped. So, I told our nurse some of this, and that I had continued to take DHEA during my admission. She was unfazed.

We went on to discuss various tablets known to assist in developing strong erections. Again, I let her know that I had tried using these on occasion with some side-effects from one of them, but a generally positive result. I had been on the Net, and found information supporting their use in spinal patients. I expressed some anxiety about a rare syndrome occurring in some, where because of the disruption of autonomic nerves, the normal balance between parasympathetic (soothing) and sympathetic (fright, flight or fight) can be disrupted. This can lead to rapid pulse, facial flushing, dizziness and other more serious things, with occasional fatal consequences. She reassured me this was rare, but then rightly went on to check for any possible symptoms I had had. I was reassured that in due course I might trial some chemical assistance if need arose. All of this was a bit speculative, because I was not sure how the next few weeks would pan out. For a start, when I got home I would continue to sleep downstairs until I could physically get upstairs safely to try sleeping in the marital bed.

The very next day a young female registrar came to test those bits of my anatomy not included in the discharge ASIA test. I did warn her that she might be in the firing line for my lack of control over wind. Dismissively, she said it was all part of the job, and undeterred stuck pins in very private places. My hyperaesthesia (overactive nerves) fired off. Ow! Thanks for dobbing me in to the doctors, nursie! But then again, the result went some way to reassure me that down the track my manhood would be recovered.

Further reassurance occurred during my first few days of being home, with a further ‘stirring’ – not in response to anything particular, just one of those early morning happenings. I smiled, and later shared the story thus far with Jan. She smiled. Neither of us got very excited.

At last I made it upstairs, and that is another whole story in itself. Needless to say I had been working hard at the physiotherapy exercises to improve my thigh muscles. And having spent the first week at home also practicing walking with a stick, one afternoon, I clenched the bannisters in a death grip with my left hand and used my forearm to lean for security. Doing as I had been trained, and quietly determined, I lifted my left ‘good’ foot (the ‘good go to heaven’), and using one crutch on my right for support, I dragged the other foot up to meet it. Then the next step – left first and the right to meet it – until I had completed all 17 steps. I was watching a cricket match on TV when Jan arrived upstairs; “What are you doing up here; you were supposed only to do that under supervision” (a broad smile). That night I slept in my own bed.

There is so much relief and also anxiety in getting back to sleeping with your partner after 9 weeks. The bedroom had changed subtly and somehow looked more feminine, and on several mornings Jan stretched languidly across the whole bed; after all it had been all hers. The fact that my legs didn’t move very fast in retreat was an embarrassment to both of us. But it is so nice to get back to privacy, the familiar surrounds and smells of a shared retreat, the joy of watching a woman undress to come to bed. I was in heaven. And the triumph of getting upstairs left me once again teary. At that point I had no other expectations. I did have anxieties. How good was my bowel control? Could I manage to avoid soiling the marital bed? I worked at it, went back to wearing underwear to bed, and pads to assist if I thought there was the slightest risk of an accident.

There was never to be one, not even a little leak, and for this I am very grateful, although it took many months before I was convinced enough to leave off the pads and the underwear occasionally (historically I have always slept raw). In contrast though, I did have to put up with the embarrassment of passing wind on several occasions; it just seemed to sneak out. Apologies never seem to be enough to assuage the feelings, though Jan has been very accepting, and promises me that I never did smell very much anyway! (I never knew that!) What about urine? Well, I did have a couple of accidents, but they were not in bed; rather they were as I approached the toilet as if I was settled and ready to let go when in fact I was not. Very soon though I was convinced that, despite having to get up at least twice a night to thump off round the end of the bed to the bathroom with my single crutch, I would never leak.

With all the little anxieties it is not surprising that there was no action below, even one the size of a thumb. I was just beginning to despair a bit when one morning it happened. It was early, and I was anxious both to wake Jan, but also not to wake her. She deserved every minute of her sleep considering the pressures she had been under and the anxieties she had coped with. On the other hand… How would we be able to make love? Would ‘it’ be big enough to achieve anything? What would it be like to make love again? What would I feel (given my ASIA scores on lack of (or altered) sensation)? What would Jan feel, and could I make it a good experience for her?

I began to caress her, and she responded. My little happening began to get more enthusiastic. One of the problems with a spinal injury, of course, is that the muscles in legs and behind just disappeared over the first weeks in hospital. Although there had been some improvement, all the physiotherapy and other exercise I had had to date just had not yet brought all the muscle back; so manoeuvring was a real giggle, and I needed considerable help to get into the right position. Embarrassingly, I then had to ask whether I was actually ‘in’! The only bit of feeling was around the ‘corona’ of the glans penis, and surprisingly that was almost painful – perhaps akin to the hyperaesthesia I was feeling in legs and feet. The more I moved, the more painful it got. Did I care? Absolutely not; I was ‘home’. There was no sensation in the shaft, or at the base of the penis, so the pain was all I had. I managed to get some movement going, and both Jan and I felt immense relief, even if I did not ejaculate. That would come later with rather a lot of hard work. Was it all worth the effort? You bet.

The second effort some days later was probably related more to wishful thinking than an erection to start the process off. I certainly was able to make Jan feel good, which was an important start. However, when things did not get going well, I thought it might be a good idea to use some Cialis, and tried half a tablet. Two hours later there just was no result; I could not raise the dead! Disappointment and anxiety set in. However, several days later the erection was there, and suitably enhanced by Cialis, allowed us to have some fun – and feel sort of normal. I guess I got to learn that the psychological urge just could not get through the nerve damage on its own. You just have to wait for the reflex activity, and then capitalise. Everyone is different of course, but apparently you just can’t force these things.

Since those first efforts, there have been improvements. My musculature is improving from the exercise program. Nerve sensation is improving; the hyperaesthesia in the glans has reduced, I can feel warmth and the beginnings of touch in the shaft and at the base of the penis. So overall my confidence is better, even though reaching orgasm is still a trial.

I suppose the postscript is that we had our follow-up meeting with the Medical Director of the spinal unit and (shock, horror) late in the interview he actually asked about sexual function, the first doctor to ever do so. We went into great detail, at the end of which he was able to reassure us that we were on track, and there was likely to continue to be some improvement, even if no-one could tell us how much.

Has my spinal problem affected our marriage? Strange to tell, I think we have an improved relationship. The level of intimacy is better than ever, and we are able to talk about such detail without discomfort. So far we are managing well. Which is good, because at this point I am not sure I could manage without my wife, driver, companion, carer, and …. lover.

A word to the wise: “DHEA is a banned substance in athletes. So if you are considering using this, or anything like it, my advice is to see a specialist in the area of sexual health. Don’t be embarrassed; they won’t be! We are all different, and advances in sexual health occur all the time. Seek advice, and share the special journey with your partner.”

“Oh, and giggle lots!”

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Further reading:
Wikipedia on male sexuality after spinal injury
Basic information on erections
A large study on erections after spinal injury