BNO & self cathing
Posted , 4 users are following.
Hi all, I have previously posted on here before.
Introduction:
I self diagnosed a "bulge" in 2021 in my lower right abdomen. Went A&E they said could be a hernia. Had CT scans and it turns out it a trabeculated wall. It totally came out of the blue. It was spotted as I had got lean and lost weight and noticed it.
Went to see a urologist, had a flexible cystoscopy. It was noted my prostrate was mildly occulsive, and showed a high bladder neck with non-occlusive lateral prostatic lobes, there was also a spasm at the bladder neck, which was somewhat high?
I had a urodynamics test done which showed a poorly compliant bladder (pressure of 27cmH20 at an end-fill volume of 229ml) and extremely high voiding pressure (100cmH20). The maximum flow was reduced at 9.9ml/second and had a post-void residual of 700ml.
**Feedback: **
Uro advised I need to immediately start CIC, as wants to avoid bladder stretching more than it already has (which I did). He also said that it was be strongly advisable to have the bladder neck incision procedure to improve bladder emptying and reduce his voiding pressure over time back towards a normal level - this has not been carried out.
**Update: **
To give some feedback after a couple of years doing this, I am now essentially totally reliant on CIC to empty bladder. Sometimes it feels like it hasn't fully emptied and I will need to go a couple of hours later (but this could be due to drinking fluids). Not sure if it is normal but sometimes get a bit of discharge (just a drip). I void very little prior to self cathing, this maybe due to my bladder not being full to the brim like it has been previously when I could urinate myself.
I am 42, fit, married and have a young child. Occasionally, I like to have a drink every and socialise with friends. However, CIC puts big restrictions on this as it's not great going to bars etc when the toilets are busy.
I'm in two minds as to whether to stick with how it is currently or do the procedure for a better standard of living. But the uro did say that it would be likely that even after the procdure I'd still need to CIC in the short term until things fully improve.
Initially, i got depressed and down about having to CIC and what the future would be like, it's manageable but there are limitations. You always have to be close to a toilet when out and they have to be suitable and clean.
0 likes, 4 replies
cali-mike1970 graham46099
Posted
sorry to hear of this for you and at your age too. i've heard of trebeculated wall on the inside of the bladder like hardening. So does this mean you had this and it ended up bulging somehow? had not heard of this.
i'd def get a few opinions and make a considered choice. there are trade-offs and you want to be sure it's the right choice.
graham46099 cali-mike1970
Posted
Yes, over time it would seem because my bladder has stretched, the elasticity has gone and has resulted in a bulge appearing. It feels weird at night when I sleep as i can feel it moving around which is odd. I'm not sure if it will get go or not.
I have seen one Uro, who has referred me to two others who have both agreed with his opinion (not sure if there is a conflict of interest or not there?) but they have also said that an op will need to be done at some point and until then, I will have to cath until such time. Even after the op, the uro stated that self cathing will still need to be done.
michael68883 graham46099
Posted
hello,
i am 58 and have been self cathing for little over a year. definitely took a bit to get used to it. overall its been a game changer for me as none of the surgical options appeal to me. i would be happy to discuss my experience with you if you want.
graham46099 michael68883
Posted
Always interested in hearing other peoples experiences. I agree that it is the best option over any surgical procedure.
However, from a lifestyle perspective, i find it quite intrusive at times. For example, if i go out on social events, i have to ensure that when i have drinks i am never too far away from a toilet and that they are "clean" and not over populated. I often go to football matches and fortunately there are lots of disabled toilets to use but people try to get in them when you're half way through cathing and that adds to the stress. Or you worry about someone judging you that you're going to the toilet and you've been 5/10 mins.