Urinary issues with ASD?

[GinAndOnIt]

Sorry if this is a bit garbled, or not telling the full story. I can answer questions for more info but am a bit useless as trying to remember everything related otherwise!

I'm just curious, if any MNers with autism/SPD/whatever have trouble with urinary frequency?

I am yet to look into being diagnosed officially, but I suspect I may have some sort of sensory issues, and the most debilitating thing is my bladder. I'm now at the point where I can't cope anymore, and want to see medical advice, but I'm wondering whether it's worth linking it in with a possible ASD diagnosis at the same time.

So, my main problem is having an urgent need to wee if I'm in a situation I'm not comfortable with. Even if I've just been 5 minutes ago. This used to just be when I was nervous about something, but now it is pretty much every time I leave the house (but with varying levels of severity).

I am now at the point where I refuse to drink anything three hours before I need to leave the house, so I can try to reason with myself that if I was to lose bladder control, it would be a minimal amount and I could hide it.

I spend every moment I'm out of the house constantly reasoning with myself that I do not need a wee, while slowly getting more and more worked up. I will start shaking and getting hot, and eventually will want to shout/cry and just shake someone until they can get me to a toilet quickly. Then, when I go, half the time it will be a trickle.

If I'm at home, I can go hours without needing the loo. I don't need to get up in the night either. It is getting to the point where I never agree to plans outside of the house anymore, and actually dread going to the shops, whatever.

I'm due to give blood in half an hour. I know I need to drink because my veins are barely visible, but I can't bare to be sat in that chair without toilet access. I'm going to wear pads and get on with it, but it's constantly exhausting.

Does anyone else have experience with this, or think it could possibly be related to ASD?

It's anxiety related, which of course could be ASD related. If you Google 'toilet phobia', there's quite a lot of info on it. I have the same issue, and it's a real bugger. I find it's worse when I wear tight clothing - I think I get confused as to what I am feeling, whether the pressure is from my bladder or my clothes. I have a theory as to its cause though - I think people with ASD are more susceptible to phobias, and when I was a kid, my Dad would refuse to stop the car on long journeys. I became very anxious about the feeling of needing the loo. Understanding that has helped me a great deal, and I used some of the techniques described by Christopher Paul Jones (he has some YouTube videos) to work on it, and it actually has become a lot better. I can still get a bit uncomfortable and worried, but I don't have panic attacks. I sympathise though, it is debilitating - I refused to go to the cinema for years because of it!

Areyoufree thank you for all that info - I'll have a read of toilet phobia today.

I'm actually at the point where I'm refusing to have children because I'm dreading that 12 week scan where you have to have a full bladder. I just won't cope with that :(

I didn't have a full bladder for any of my scans! No way could I cope with someone pushing on my stomach when I needed a wee. One time they sent me off to drink some water, but other than that, I had no problems with the scans. However, being pregnant is a great excuse for running to the loo sporadically, so even if you do freak out, they will totally understand a pregnant woman making a frantic dash to the loo!

The thing is, I've never actually wet myself or 'leaked' - I used to have the nickname Camel because I could hold it for so long! I can't understand where it's come from, but I can really notice it getting worse. Especially when I see photos of things I went to a year ago, and realise I couldn't do it now.

I also watch programmes like First Dates and panic the whole time that someone is desperate for a wee. It's ridiculous.

I can tell the difference in the two feelings, so I know when I actually have a full bladder and when I just have the nervous urge. But there is just no reasoning with myself in the moment. I can't concentrate on anything else. DP laughs at me because I have to put my glasses on to concentrate if there's a 5 min wait or whatever before I can get to a loo. I laugh about it but really I'm hugely struggling now.

Is there anything a GP can even do though, if I asked for help? It's clearly not a physical problem with my bladder as I don't actually have accidents.

I'm exactly the same OP - it's like you were describing me instead :)
I'm sure it's just anxiety-related and now having got into a mental state where I associate going-out situations with needing the loo I think I'm in a vicious circle. Not that it helps you but it's good to know I'm not the only one! I might look at CBT (at home - going out I'd be stressed and needing to go!)

My lovely GP referred me to an OT specialising in exactly this anxiety/bladder issue - she did a (bearable) physical assessment to rule out serious physical issues and then asked me to log my 'output' for a few days so she could establish my patterns/capacity and she went through the results with me. She did lots of reassuring and then suggested exercises both mental and physical to deal with anxiety and strengthen pelvic floor. Saw the OT three times, and it has helped - worth asking your GP if there's anything like that where you are and if you can have a referral?

Sounds anxiety related to me. I've not had this personally but I do have IBS which causes bathroom related issues of its own and is apparently common with ASD.