Urodynamic tets booked for male who is CIC

Men's health
1

Hello to you all. As you may or may not know I have been on this site for about 3 weeks in total and have found it - YOU ALL to be invaluable! My partner who is 65 and who was being monitored 'watchful waiting for a rising PSA level - started at 4,  then went up to 5 a year later and was this year at a 6, until he got 'suspected' prostatitus in July this year when it rocketed to 12. In July he had to go to the emergency hospital as he was totally unable to pee. His bladder was drained by catheter and he was eventually sent home. Next day he was back at A and E with exactly same issue - totally unable to pee and in much discomfort.  He was again catheterised and bladder drained and sent home with catheter in situ. He was told to attend an out patient appointment a weel later where the catheter would be removed. He attended and despite drinking large amounts of water was still unable to pee at all. So he was recatheterised and told to come back in a few days and they would show him how to CIC. He has been doing this (CIC) for almost 3 weeks and he has an appointment next Thursday where they are due to perform urodynamic tests. I can't find any information on the internet re urodynamic tests in men who are CIC and I am quite worried that these tests may cause more problems than they solve. Have any of you gents had this kind of experience? If so a reply would be VERY MUCH apprecieted by me. He has BPH or at least that is what we have been told, but has never had anything  other than a digital rectal exam where the consultant said it was 'BIG'! A couple of years ago we refused a biopsy, and they said no biopsy - no scan so we really have very little - well no accurate information re his prostate size etc. I have read that in urology testing they fill the bladder for numerous bits of these tests, but I am scared that they may damage his bladder by overstretching it. He is currently peeing between 150 and 300 mls when he CIC - which is usually 4 times per day. Any information or advise would be brilliant!

​Deb x

2

Deb,

I was in a similar situation:  AUR, then 3 or 4 trials without catheter that failed.  I did the urodynamic testing (uncomfortable but manageable) and my bladder checked out okay although the urologist said it looked worn out.  That was 2 years ago and I'm still having to CIC.  I had a PAE a year ago but it only helped about 5% - probably because I have a large median lobe.  If he doesn't have a large median lobe (and maybe even if he does) he should definitely look in to the PAE.  My doc was great: Ari Isaacson at UNC Healthcare.   Good luck!

3

CIC = Clean Intermittent Catheterization, not to be confused with constipation, took a couple searches to figure that out.    It's possible to do an ultrasound procedure to more clearly show the organs involved, and it's surprising to note its absence in your description.  You very well may have more going on that typical BPH from the sound of it, with those rising PSA values.  Have your guy inquire about more diagnostics.  If the amount of urine is less than 500 mls it's probably not an indication an excess that would distend the bladder, if I understand my own results.  Best wishes.

4

I’ve been following this blog for about 8 months and have heard a lot about cathing, drugs, and the various BPH procedures including PAE, Rezum, Urolift, TURP, Green Light Laser and HoLEP.  The following summarizes what I’ve read as best I can.

 

Bottom line:  drugs may work for a while (for me it was about 3 years), but they are not a long term solution and can also result in damage the bladder from constantly being over extended/full.  I used tamsulosin (Flomax) and dutasteride which did help, but eventually as the prostate continued to grow, the effect was lessened.

 

Some procedures seem to work for some but not all.  Worse yet, some have reported total incontinence after their surgical procedures.  It’s hard to tell if it was a botched job or not.

 

The best answer imho is surgery, specifically HoLEP.  I did the research on all the procedures (except PAE….had not heard of it), and chose HoLEP.  It is the best surgical procedure because; 1) less time in the hospital and a on catheter (less than 24 hours), 2) less bleeding, 3) very small chance of needing a repeat procedure, and 4) they remove prostate tissue (instead of burning or otherwise destroying it), so they can biopsy it for cancer.  I have heard no reports of anyone having HoLEP and needing a second procedure or experiencing incontinence or needing to continue cathing.  I’ve heard way too many horror stories on this blog about TURP & GL.  My uro explained that they both burn the tissue out, and therefore leave scar tissue.  That tends to shrink over time, and hence the need for a repeat procedure. With HoLEP, they cut the tissue away, grind it up with a ‘morcellator’, push it into the bladder, and then wash it back out.

 

Yes, you the have retro ejac, but sex drive returns, and since I don’t plan to have any more children (age 68), it’s not a problem for me.  I was retaining close to 800ml, and my prostate was 85 grams, PSA 3.8.  After it was 46 grams, PSA 0.2.  I had my surgery in January, and after two to three months had no problems at all.  I did have leakage for 3 or 4 weeks.  Some in the UK report they were told to do Kegel exercises for a few months before surgery to avoid this.

 

I have heard some good reports on PAE which is done by interventional radiologists.  It is an outpatient procedure and far less invasive.  If I had it to do over again, I might do that first.

 

Lastly, the experience & ability of the doc is critical, and often difficult to determine.  Hospital ratings for various specialties can be found in the US News & World Report evaluations.  Bios for docs may or may not be available.  For example, the Mayo Clinic was rated best in the nation, and they have the education and publications of their docs listed…… very helpful. Best of luck!

5

I had Urodynamics test after I had been CIC'ing for about a month. It was a very controlled test and I had no adverse effects. Test determined my bladder was not pumping. Short story after 3 months more on CIC I had HOLEP surgery 2 weeks ago and am able to urinate on my own again.

6

HI jim. Thank you for your reply. Thats great news! I am really pleased for you. I hope we have similar results later on. Thanks for the information I feel quite reassured by what you have said.

​Thanks Jim x

7

Re median lobe I am in similar boat, I am confused about it some say it doesn't make any difference, some say PAE won't work if you have one. I am considering having a second PAE

8

Me too; however, from talking to the doctors and reading this forum for 2 years, it's pretty obvious that the PAE is significantly more successful without the median lobe issues.  So, I would need to see more success in that area before I go forward with a second PAE.

9

Have you had a scan since your PAE to see what, if any, overall decrease in your prostate was acheived?  I haven't yet - but plan to.the

10

I am going to have another MRI and then discuss with surgeon - like you I feel about 5% improvement or maybe a bit more so that meds make it tolerable.

11

Are you still CIC'ing?

The most improvement that I did have was in the area they told me it probably wouldn't help!:  nightime bathroom trips were cut in half.

12

I've never done any catheters, want to avoid that, I get up every couple of hours sometimes less and I can live with that for the moment

13

Yes - best to avoid if possible.  If you ever need them go straight to CIC as it is much less painful and healthier than an indwelling foley catheter.  I didn't need them either until I went in to acute retention as a result of taking antihistamines!

Best of luck to you!

14

Thanks for your replies! I'll keep it in mind re second PAE.

15

Repeat procedures around 10%.

I've put up a link for the moderator to approve.

16

UK urologists thoughts on Holep.

http://www.ouh.nhs.uk/urology/services/documents/holep.pdf

 

17

It's almost sad that we all need to speak to others about this and other ailments because basically people don't trust doctors any more (follow the money). But thank God for this forum!

18

Hi Mike, I totally agree with you! I keep telling everyone that I know about this forum because it really is a Godsend! No politics, no payments, no hidden agendas, just people, mainly men, trying to support and help each other (well on the prostate bit anyway)! You are also right that it is very sad that it has reached this stage. When we saw our GP a couple of weeks ago, he actually said to us "I am at a loss as to what you want me to do". I WANTED to say to him, we just want you to listen and to try to help us decide what the best way forward is with this health issue, but because we didn;t want a prescription - he was totally at a loss! When we went in to his office he was ready pen in hand hovering above his green script prescription booklet, I actually thought when he said what he did - why are we wasting our time here, let's just go back to the forum and check out with the other gents. I just wish that I had the nerve to say it to him! But I didn't - but I agree with you that it is very sad! My only hope is that more people turn to ordinary people using sites like this one, and that an evidence base is built that is based on experience - and been there got the tee shirt knowledge base. For quite a few years now I have not trusted the medical profession, to much tied up in incentives to prescribe this and that whatever is flavour of the month. When a consultant, backed by a GP tells you that your only option is TURP - its time to look elsewhere like this site and get honest, up to date, real experiences of people who have no vested interests other than to help others through information, experience and support.

Best wishes to you Mike

​Deb x 

19

When my prostate problems started and I began to research the subject my then GP said I knew more about it than he did.

I was fortunate at the time (1995) as a Daily Telegraph journalist had just started out on his prostate journey of discovery and was writing a series of articles on the dangers of TURP and unhelpful head in the sand urologists. The urologist who was telling me that I needed a TURP as a matter of some urgency was interested in the articles and asked me for copies of them. I then read a book on the prostate by the urologist for the US Navy. I had some correspondence with him and he advised me against TURP and said to wait for one of the laser techniques being developed.     

20

Hi Deb. In New Zealand it is important before seeing a Specialist to do urodynamc test. Here we drink 5 cups of water which is unlikely to damage a bladder. However I think with the PSA level of 12 something needs to be done. Having a biopsy I think is the next step. Good luck to your partner.