www.incontinentsupport.org

Hi all, 49yr old guy from Australia.

Been lurking here for a lil while and finally decided to join. I think I waited so long because I was hoping for a miracle cure to my urge incont’ (pee only) at my last urologist appointment.
This was my 3rd appointment where she did the urodynamics test and a look see up my urethra with the camera. Nothing showed up as abnormal on the camera (I was certain this was going to show something at least)

About a year ago I was working in remote North West Australia in a mostly desk role. I noticed I was peeing a lot more than usual even for the amount of water we were all drinking because of both the heat outside and working in an airconditioned office which dries you out quickly also. One day I got sick of walking to the toilet so often (seemed like every half hour at the end) that I decided to just hold like I was used to doing. I could hold for a fairly long time and thought I’d just persevere a little and maybe make it once an hour to visit the restroom. It was at this point that I found out I couldn’t hold for any longer than about 5-10 minutes from the first feeling of needing to go.
I went to see the camp doctor (construction camp of about 7500 people so it had it’s own medical facility) to rule out any STI/STD’s and UTI’s. All clear in those regards so he decided to check my prostate (the old fashioned way :S ) and all felt normal.

On returning home for my week of RnR (26 on /9 off swing) I saw my own GP who got me to do a pee log, fluid intake and amount pee'd etc and prescribed me Detrutisol to stop the bladder spasms etc. These did nothing apart from a headache and messed up my vision enough that I stopped taking them after a week or so. Next visit she ordered an ultrasound of my bladder, kidneys and prostate. All clear there so next step was a visit to a urologist in Brisbane. He took notes and pretty much said this shouldn’t be for someone who’s 49 and prostate is healthy (Blood work was normal, ultrasound showed normal size and 2 old fashioned checks). He prescribed be Tamulosin (grasping at straws as this is really for restricted flow from BPH) but it did nothing. 2nd appointment with him and he ordered the urodynamics test and cystoscopy by his counterpart at the practice. This was the 3rd visit mentioned earlier, camera showed nothing, urodynamics showed a bladder spasm at the end of emptying (500ml whereas the pee log from earlier I never held anything more than 300ml) so now I'm on amitriptyline 10mg. They don't seem to be helping any, maybe longer between feelings of needing to pee but I still can't hold. I can hold back the first wave of needing to pee but a couple minutes later I'm wetting my diaper and all I can do is try to regulate the flow so it doesn't flood.

So here I am! Not game to leave the house without at least a pad in my undies.
I’m fine if I know the area and where the nearest toilet is but doing things like shopping, walking the dog, driving a distance and lastly flying on a plane somewhere I started wearing tape up diapers. That 5-10 minutes of warning just isn’t long enough doing those things!
I also started wearing them to bed just so I didn't have to get up the 4 or so times a night to pee . Felt guilty as heck at first about consciously going in a diaper instead of getting up but getting back to sleep was sometimes not happening for an hour or more.

There’s a bunch more about this but this’ll do for an intro post

Welcome to the group. You’re amongst people who understand what you’re going through. I also have urge urinary incontinence which is the result of a surgical mishap when I was 14 years old. I bled excessively following the surgery, and that somehow damaged the nerves that control my bladder. I’ve been in diapers 24/7 for many years. You get used to it. Managing incontinence is a nuisance, but I consider myself lucky not to have any other major medical problems.

Welcome! I'm sorry you are dealing with all this, but glad you chose this forum to join! There are some fantastic people here who are all dealing with the same or similar issues, ready to help in any way they can.

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"When you die, on your deathbed, you will receive total consciousness. So I got that goin' for me, which is nice."

Welcome also, a lot of support here

Add my welcome to those above. We're all in this leaky boat together, so company is welcome. Your account of being sent from doctor to doctor is familiar indeed. I hope that you will discover that wearing protection, although embarrassing, is not in any sense a defeat. Protection enables you to get on with your life.

Hello!
Welcome to the neighbourhood.

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Linja-autojen ja rakkauden perässä voi juosta tai odottaa seuraavaa.

Thanks for the kind words and welcomes


I don't feel (yet) that I've been passed off from doc to doc, more of a getting things in motion by seeing GP first for referal (need one in Australia or you have to pay the full price with no government healthcare (medicare) assistance.) The two urologists I've seen so far are from the same practice, just that the second one specialises in the urodynamics and cystoscopy side of things. But in saying that she did ask if I was comfortable seeing her primarily from now on. No qualms from myself whether it's a female or male doctor.


24/7 from age 14 :O I'll count myself lucky I made it to 48 before needing diapers then!

I guess I've got my routines down somewhat, what diaper I'll wear for what occasions etc, gym time (lifting and or running) gets a Tranquility as they're nice n thin and even under my light nylon shorts aren't noticeable (I hope so anyway lol) unless the bits that stick out at the legs after taping up come untucked, but even then they just look like white inner pockets. extended driving trips or flying I wear a blue molicare with the plastic outer. they last so much longer and when flying I can pull the front down enough to use the toilet. They really only come into play if there is a queue or the seatbelt light stays on for too long. I do enjoy a beer or three when flying so there's always that problem :S

Hi Wedguy,

welcome to the group. While reading what test you had done I'm wondering about the results of the urodynamics. I'm not sure when you have the next appointment with your doc, but if you can hold it until 300ml, but the UD shows up 500ml (what is a normal value) I would ask next time you visit your doc if he can do a urine test that check the Etio-S marker (metabolic urine biomarker – etiocholan-3α-ol-17-one sulphate). More over a KCI Sensitivity Test (potassium chloride test) might be helpful and a NBI cystoscopy as well (unfortunately not all doc's have this equipment...). The point is, that the liquid they using normally to fill your bladder while a UD is not the same as "normal" urine (which is much more aggressive). For this reason a normal UD can show wrong result when ist comes to bladder spasm and your bladder is for whatever reasons hypersensitive. Moreover a "normal" cystoscopy have not enough resolution to show particular defects of the bladders (hunners-lesion) in an early stage and that why Narrow-Band-Imagin (NBI) is needed.

If one of the above mentioned test are positiv (or both) you might have a IC problem. The treatment is partly different here to a normal OAB diagnosis. This is particular important because in this case the disease progression is chronic progressive, and the earlier the treatment is started the better are prognosis.

I've been wondering if I have IC. Never been diagnosed with it, but it runs in my family.

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Linja-autojen ja rakkauden perässä voi juosta tai odottaa seuraavaa.