Living with Primary Nocturnal Enuresis


My Story – Submitted by: Anonymous

I have had to adapt to my surroundings and develop an intricate “cover” for the reasons why I do things, why I have never “slept over”.

When I go camping I always have two sleeping bags. I will sleep in my own tent and will swim in a freezing river early in the morning.

I can stay awake all night at my girlfriend’s house and she never knows, but I can’t stay there for more than two nights in a row.

Walked 20 kilometres home from a party because I dozed off.

Why do I keep my bedroom door shut and get up before everyone else in a shared house? They all think I’m a clean freak because I do the washing every morning and always wash my sheets. They tell me that I shouldn’t freak out about bed bugs.

Just a few situations that primary nocturnal enuresis has put me through.

Then there is the ultimate destroyer. Someone finds out I wet my bed.

It’s interesting how people think of me as educated, mature, a good role model, all the good things a man should be, until they find out. Then I’m just a 3 year old. You can see it in their eyes, their comments and the way they treat you: a three year old. Once somebody finds out, you are at their mercy. If they want to hurt you they just spread it around. You can see who they have told because of the change in the way these people treat you.

People say we are a kind civilized society. They don’t wet their bed.

As I was growing up I got the usual “you’ll grow out of it” speeches and the alarm at night. I even got the stretch your bladder capacity routine from specialists . These specialists also liked to quote statistics about how many people wet their beds, although they never quoted numbers for 18 years or above. I have never met anyone else in my life who has primary nocturnal enuresis, although if I can hide it so can they. But there is no way to arrange a group or meeting. Alcoholics and drug users can have support groups why can’t we?

I have seen bed wetting called the Cinderella syndrome, something you keep hidden in the home and no one else can ever know about.

Gay people say it’s hard to come out. Try wetting your bed and coming out with that! At least gay people have support networks and can look to celebrities as examples. I bet Brad Pitt or the like don’t wet their bed.

I have everything in my life under control: job, wife (I’ll go into that in a minute), house and all that. At least that’s what people see. In actual fact I have everything under control while ‘m awake, then I go to sleep.

When I was growing up it was a big deal for me to have a dry night. My grandfather even paid me for every dry night I had until I ended up in hospital with dehydration because I thought that if I cut down what goes in I can cut down what comes out.
Even unrelated hospital stays were an issue. Look at the doctors and nurses faces and you could tell they knew.

I can’t join the armed forces, or the police or fire fighters. I can’t work in mining camps or on oil rigs or ships or anywhere that you share a room or someone else cleans it or you can’t wash sheets every day without people knowing.

I think that bed wetting should be classed as a disability, not so that we as sufferers get looked down on or seen as lesser humans, because that already happens, but so we can get help and support when we need it. Another side of the disability point is also that is someone bullies or discriminates against you because you wet the bed, you can do them for discrimination in the courts!!

Back to the wife part. When I was about 33 I met a nice you lady and things started to do what things do. I would stay over for a couple of nights in a row and then spend the next couple at home, alone, and the excuses where watertight.

Anyway, one night I was exhausted and dozed off in her bed I wake up later to that familiar sensation and realise that this relationship is over and I need to go. I wake her up then break down and tell her the whole truth and that I am going to clean up and leave (standard protocol for such a situation). Her response is to walk out the room without a word,(usual response) so I stripped the bed quietly, because this was a shared house and wrapped the bed clothes in a tight bundle so they would not smell or drip on the way to the washing machine. As I went to walk out the door she returned with fresh bed clothes and tossed them on the bed, took the sheets off me and said to make the bed, have a shower, and “Come back to bed. You aren’t going anywhere!” Needless to say we passed the sheets off as other reasons.

Within a week I went to a doctor she found and he talked to me about my condition and what I had done previously. He understood and cut to the chase. Perhaps he had the same thing?

He told me that it was common for people with primary nocturnal enuresis (which is what I have because it has happened since birth) to not be producing a thing called ADH or Anti Diuretic Hormone and to try a nasal inhalant called MINIRIN. And come and see him again in a week.

MINIRIN which contains DESMOPRESSIN ACETATE which acts as a synthetic ADH. He told me it was expensive but he got me a government concession for it so it costs me $30.00 for a month and a half of doses.

A week later I went and saw him and tried to explain the difference it makes. He just sat there and had that whole Zen master/ Yoda look going on. That was 6 years ago.
I can’t make a parallel to try to explain how life has changed; two snorts and I will wake up dry GUARANTEED. Not bad for under a dollar a day.

Now I go camping with one sleeping bag, and my wife shares it with me.

I just wish I had it twenty years ago.

I have not seen many publications dealing with the side effects of bed wetting. Physically I have lung problems caused by the nightly exposure to the ammonia like vapours. Emotionally, let’s not go there, I might get put away.

One thing I have noticed though is that I can detect the smell of urine much better than anyone I know.

Other stuff: I hate the colour yellow.

Putting someone’s hand in warm water while they are asleep does not cause them to wet the bed.

I can stay awake for 3 days and party or play video games while others crash and burn.

MINIRIN lets me drink right up until I got to bed and still stay dry, it’s like a valve.

Don’t misuse drugs, but if they can help you, use them as directed.

I hope this is useful or helpful.


Posted in Shared Stories from People with Incontinence and tagged , , , , , , , .