Reply: Advice & going back to the GP

Thank you for getting back to me! I will bare that in mind when I next time I get an urologist appointment. I'll have to book a zoom call soon, I just don't know when yet. Again I appreciate your reply!

Hi, thank you for your reply! Yes hopefully I'd be able to attend the zoom workshop. I will check out those resources too.

Hi again, Ben - & welcome back to the forum. It’s good you’re reaching out here for more support.
Sorry to hear of your last visit with the urologist & am shocked about that device they suggested to you.
It doesn’t sound like a pleasant way to try & help.
A man I met up with up with many times via this forum messaged me in the week to say he’s found a few useful videos on YouTube. Maybe there’s a video on there about the electric device you might find interesting to watch?

On the subject about what to say to the urologist, you could print off a page about paruresis from a site such as Wikipedia & post it to the urologist before you see them. Enclose a polite letter explaining you are sending them that info so that they will learn what it is if they really don’t know.
How does that sound?

In the meantime, book the zoom call in with Andrew & hopefully he can settle your nerves a bit.

Good luck!

Hi Ben

Sorry you having so much trouble with your urologists. This link to a webpage of the American Urology Care Foundation briefly explains that the role of the urologist, among other things, is to teach the patient how to self-catheterise. You could print it off, highlight the relevant parts and give it to them.

Secondly on our website under the tab Resources are three documents:
1. Seeking medical/GP help with paruresis
2. UKPT booklet
3. UKPT trifold
Again you could print them off, highlight parts and given them to them.

Apart from that, if you are having trouble leaving your home to attend a workshop, we do have one-day online workshops which you do from the safety of your home using Zoom. The next one is on Saturday 9th May.

How does this all sound? Get back to me and let's move you forward together.

Cheers

Andrew

Hi, it's been a couple years but I'm back on the forum. So I recently had 2 urologist appointments booked and had to cancel both because of some other health issues prevented me from going. I'm going to go back to my GP and hope that I can get back on the waiting list to see one and suggest ISC.

I saw one urologist last though, they suggested the absurd idea of an electric device that goes on your ankle that shocks you which they reckoned would help me urinate. With how much of a joke that appointment was it's just knocked my confidence in doctors/specialists even more.

Do you have any advice on what I should say to the urologist whenever I get to see one face to face again? I feel like they don't even know what shy bladder syndrome is.

Hi Ben. Sorry to hear you’re having paresis at home. Had that problem myself.
I live on my own in a flat but the floors are thin & you & your neighbour can hear each other in the bathroom & I hate that lack of privacy. I did tell the housing association & try to get some soundproofing when they upgraded the bathrooms but they didn’t soundproof them.
My biggest issue has been urinating before I go to bed & even though I can start quite quickly, the stream will stop before I’ve finished & I can have difficulty emptying. I have tried waiting but nothing so I get into bed & can’t sleep because I know my bladder isn’t empty. I get back up & go to the toilet once or twice & pee both times before going back to bed & falling asleep.
I’m guessing you don’t live alone & maybe live in a house. What do you think is causing your paruresis?

Andrew mentions the paruresis workshop. Book one asap if you can get to one. They’re absolutely brilliant & helpful.
In the workshop we are taught fluid loading. This is something that helped me in public conveniences incredibly much.
Drink 1-2 litres of water, wait til your level of urgency is high by marking it on a 1-10 scale & using the toilet on urge 8-10 & if you can urinate then do a little & then hold in the rest. Leave the bathroom, drink more water & repeat the process a few times & finally empty what’s left in your bladder.
By drinking a lot of water it will create a sudden urge to urinate & by holding in the urine after each pee & water top up your urge will remain strong which makes it easier to go.
Practice this at home & hopefully you’ll find improvements & if so you can later practice it in public toilets to help you get used to the environment & to help you urinate in them.
Good luck!