Urodynamic tets booked for male who is CIC
Posted , 9 users are following.
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
0 likes, 48 replies
mcgillvn deb2792
Posted
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.
deb2792 mcgillvn
Posted
Take care you!
Debx
paul20443 deb2792
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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!
derek76 paul20443
Posted
Repeat procedures around 10%.
I've put up a link for the moderator to approve.
derek76 paul20443
Posted
UK urologists thoughts on Holep.
http://www.ouh.nhs.uk/urology/services/documents/holep.pdf
paul20443 derek76
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derek76 paul20443
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The NICE site is very difficult to find things on but does have a review that covers all of the procedures. I did once post it here but cannot now find it.
deb2792 paul20443
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Hi Paul. THANK YOU so much for your informed reply. It is much appreciated, especially since you seem to confirm a lot about what we had begun to think was the right way to go. We are considering Urolift, PAE and HoLEP, but we are not sure yet of size of prostate so don;t know if its too big for urolift (or is he has a large median lobe if this is possible procedure option) some say it is, as they can pin the median lobe to one of the other lobes, some say it isnt. We are due to discuss this with a consulktant on Thursday. But as someone said on here - prostates grow like weeds - and we are looking for a procedure that we don't have to repeat, or at least in the short term. I find it reasuring that you would look to do PAE before HoLep, because that is what we are thinking, although, HoLEP does seem to get very good results, and at our age over 65 retrograde or no ejaculation would not be the end of the world. We are aware of the need to find a well expereinced and skilled consultant, but here in the UK its difficult to obtain that kind of information. Hospitals get rated but not surgeons. But I take a lot of notice of who is mentioned on this BRILLIANT site!
Thanks for replying to me, and in such detail!
Take care you!
?Deb x
arlington deb2792
Posted
Be sure to ask about PAE results for those with enlarged median lobes compared to those without. (they are not nearly as good). That said, I think PAE was the best shot and it helped me a little bit (I have an enlarged median lobe).
Best of luck!
derek76 arlington
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deb2792 arlington
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Thank you for replying to me. I do appreciate it!
Deb x
arlington deb2792
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Hi Deb,
At this point I think CIC is preferable to either - until something else comes along or PAE deals w/ median lobe issues better. Kind of a nonanswer but honest. Couldn't speculate.
derek76 arlington
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At the moment he is still waiting for a diagnosis and until then cannot make a choice. So far his treatment/diagnosis has been unbelievably bad even for the NHS.
jim1233 deb2792
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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.
deb2792 jim1233
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Thanks Jim x
mike588 deb2792
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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!
deb2792 mike588
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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
derek76 deb2792
Posted
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.
deb2792 derek76
Posted
Hi again Derek. Ditto re our GP but how can they advise their male patients if they know so little about prostates? Our only option in Wigan on NHS is TURP, and like you we decided not to opt for that particular 'GOLD STANDARD' as it is banded around in Wigan!
?We are looking in to PAE, Urolift and HoLEP at the moment and are due to see consultant on Thursday, with MRI results so hopefully a way forward which best suits our condition, will come to light - at least thats waht we are hoping for. Will let you know how we get on.
Thank you for replying to me. Take care you.
Deb x
derek76 deb2792
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Has no one told Wigan that the preferred NICE option for BPH is now GL XS? It is even the cheaper option for the NHS.
Surely you know the size of your husbands prostate. Any DRE I had gave me as exact as a size as a TUMP or a cystoscopy.
PAE is pretty limited in availabilty still and I have yet to be convinced that if a prostate is wired up out of the way that it will stop growing.
I was surprised that you said in one of your earlier posts that the private consultants had passed you around so that they could all put their hands in yout pocket. I've not had that problem with any private consultants I've been to. Sounds as though they are still in the days of AJ Cronin's, The Citadel!
Is the consultant in Wigan? We once had our dinner at The Moon Under the Water.
deb2792 derek76
Posted
Hi again Derek. I am afraid not! The only NHS treatment available in Wigan for BPH is TURP. This is due to the limitations of the skills of the urologists, and equipment/lasers available, not the limitations of procedures that are widely available within the NHS. With regard to the size of my husbands prostate, as God is my whitness, every time we have asked about the size of his prostate, we have been told nothing other than 'it's big'. This is based on DRE, as we were refused a scan a couple of years ago, because we would not consent to a biopsy. Derek I am sorry if I have mislead you, but we have not seen a private consultant yet, we were due to see one this Thursday, but it was postponed till next Thursday due to a delay in the MRI scan report being sent. I think that I said it was sad that one had to rely on a private consultation to get information, as here its like if you don't want what they are offering i.e. TURP, you go in to the naughty class and can't get anywhere. We begged out GP for a ct scan, an untrasound, or mri scan, only to be told that he was not sure if he could arrange this as we were 'under' a consultant urologist.
?Derek I have never been on such a steep learning curve! I think someone somewhere should start a national campaign that all men - say over 50 years - like female breast screening - who are having prostate problems, that do not respond to drugs - should be offered an MRI scan, on the NHS as opposed to a prostate biopsy, as its much more reliable and much more accurate and less invasive.
Take care you!
?Deb x
deb2792 derek76
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derek76 deb2792
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There is an amazing one in an old bank in George Street Edinburgh that is amazinly decorated at Christmas. Tundridge Wells has one in an old Opera House that they convert back for one performance a year.
Our local one is only in an old garage but it is devoted to Alec Guinness as he went to school in Eastbourne.