Urine retention

[xpbdb]

I told my urologist that I saw a little blood in my urine. It only happened once, but 5 weeks later and after 2 negative urinalysis tests, he insisted on scoping my bladder for tumors (none seen). While in there, he showed me scar tissue in my prostate from radiotherapy and cryotherapy. I never had surgery. He decided to leave the catheter in for a few days to “stretch” the tissue. When I took the catheter out the sphincter slammed shut so I spent the next 12 hours in agony until I could get to his office and get catheterized again. It has now been in for 5 days and we will see it that works after a week. I could pee fine before the scope, just often. Now I may be looking at self catherization from now on. I am not a happy camper.

[LearnAll]

Sorry to hear about complication from scope to bladder. I do not understand why urologists are so quick to go to scoping when they can use some non invasive method such as ultrasound or MRI of bladder. If anything is seen on these tests, may be invasive procedure can be carried out later.

Prostate area is a complex equipment ,..nature has designed for the most important task..that is propagation of human race...less you mess with it..better.

[Tall_Allen]

It is common for scar tissue to break off and bleed after RT or cryo. I just had an "episode" last month after 10 years, but I knew not to worry about it. My RO recommends against cystoscopy for the reasons you described- it often makes it worse.

[Hidden in reply to Tall_Allen]

Good to know. I have had to double my flowmax since stopping adt. Something is changing.

[xpbdb in reply to Hidden]

I already take Flomax, but I’m going to ask what the maximum dose is.

[Tall_Allen in reply to xpbdb]

Two pills is the maximum, but I found that one Rapiflo worked better than 2 flomax - everyone's different. If the problem is the sphincter that won't relax, you might try one of the bladder antispasmotics like Mybetriq, oxybutynin, or Vesicare - they can relax those muscles too.

[xpbdb in reply to Tall_Allen]

Thanks 👍

[depotdoug]

Seems like we have something in common. UR: aka urinary retention. I've had my retention problem for now 15 years. I long story but to the facts.

1. I opted for42 IMRT radiation treatments after initial PCa Dx June 2005. So my Radiologist, now since retired had me due a CT scan of my Pelvis and of course prostate to map and plan IMRT rad zap accuracy. During my CT pelvis scan the Rad CT RN said "did you know you are holding about 2100mL of urine?" I had no idea.

Thus back to my 1st urologist who scheduled a Urodynamics bladder functioning procedure, not fun. More on that later, but I failed.

Dx was I had a Neurogenic bladder. Thanks alot.

2. I learned to Self-cath ASAP since July 2005 and continue today. Do I like it? NO.

3. Fact: Radiologists do not tell you or advise you of consequences of Radiation to your PRostate gland. They do not and I did not find that out till May of 2016. My last local Urologist, he too has since retired, did Cystoscopes, many, ultrasounds and even two DVIU's (direct vision internal urethral cutting procedures.

4. Yes I had a Urethral stricture directly from my radiated prostate gland. They, my skilled IMRT radiation team, damaged, tissure direcctly on my urethra. Wonderful situation. I had 2 problems: Urinary retention Dx Neurogenic bladder and a Urethral stricture that did not go away.

I continued on self-cathethering 5-6 times daily, a still do, but repeatedly had blockages, impasses trying to self-cath at home which put me in ER about 6 times at least. Not fun.

5. Finally my now retired 2nd urologist told me i probably need a Urethroplasty repair procedure to remove my stricture. That procedure was done March 17th 2017 @ IU Methodist Hospital Indianapolis during 4 hr Urethroplasty surgery. It worked.

I've been easily self-cathethering ever since, with a total real feeling of Oh what a relief it is.

Contact me if you want to know more. xpbdb

Doug

[xpbdb in reply to depotdoug]

My urologist told me about a surgery they do at UCSF (I live in NorCal) that is “70%” successful, but I don’t want to put the cart before the horse. We will see what happens Tuesday when he fills my bladder up and pulls the catheter out. I am more than a little pissed off (no pun intended) that I could pee OK before the scope.

[depotdoug in reply to xpbdb]

Bet that surgery is a Urethroplasty.

Stricture repair with skin graft. My IU Health super urologist said the same 70% success rate. I’d say 100%.

I sure really wish I had a 70% success rate fix for my Neurogenic bladder. Urinary retention sucks( or rather doesn’t suck out urine in my bladder). My S3 sacral nerve attached or near my bladder just ain’t stimulating my bladder to pee! Since June 2005. Nothing to due with radiation or strictures. I did have a MEDTRONIC interstim neurostimulator device implanted in my upper right butt/hip with a lead down to my S3 bladder nerve it worked for a while. Then battery died. They/I tried a new replacement MEDTRONIC ISTIM Implant in Dec 2016 which also didn’t work worth a crap.

Positive news: urinary retention at least I can wait 3-4 hrs before peeing anywhere. Makes driving or exercising enjoyable...

[xpbdb in reply to depotdoug]

Sorry Doug you have had a rough go of it. I never post to this site expecting sympathy. I guess I need to make that clear. I really only wanted feedback from the 10K members who may have had my experience. When my time comes to check out from this awful disease I will let you all know. For now I am grateful to be alive with a loving family and dog. I will never stop fighting the fight though.

[akaipop3ps in reply to depotdoug]

Hi Doug, how long did each DVIU last?

Any warning before the second close up that required another DVIU?

I too have urethral stricture at membranous from IMRT and HDBRT, had one DVIU about 18 months ago. At the beginning of June had blood in urine again, the urologist did a cysto but could not pass the stricture that is closing up again, he estimated the opening has narrowed to about 8mm. I am debating if I should have a urethroplasty which is a major surgery or to do another DVIU.

At this point I am able to urinate but not sure when the stricture will completely close up and block my urination.

Thanks,

Akai

[depotdoug in reply to akaipop3ps]

Wow, interesting comparison. Facts: we both had IMRT radiation zaps, mine way back in late 2005. Plus I've been self-cathetering since 2005, nothing to do with IMRT or strictures or PCa. I just ck'd my chart from my past(no longer) urology group and

1. 1st DVIU(with cystoscopy) was 03/29/2016 2nd DVIU was 12/13/2016 right before Christmas time. I remember that well. That equates to about 8 1/2 months.

2. Warnings: The evening before Thanksgiving 2016 i could not even self cath, well if i tried hard i could but with blood. Not good not good at all. I drove myself to my Urologist hospital, hurried into the ER on Thanksgiving day. The ER RN's faithfully tried to Foley self cath me, but coudl not. Waited and waited for my Urologist practice doctor on call. He finally succeeded in using a Foley-filiform(sp) type catheter to clear my stricture path. Not fun. I was scheduled as soon as possible for another DVIU Dec 13th. Succesfull until i began having self-cath blockage issues Jan2017.

I rapidly looked for URologists, that do URethroplasty stricture repair surgeries, with my past urologists list of 3 places. A Detroit med area, Cleveland Clinic, Cleveland, and IU Health Urology Indianapolis.

Let me know what you think and I'll be happy to share my Urethroplasty surgery experiences. It was not as bad as some say. Mine was and still is a huge success. Even with my self-self cathing, lifetime sentence.

Please let me know what you thing or contact me via HealhUnlocked messaging.

Doug

[depotdoug]

Thanks. I won’t even mention my cardiac life issues. But I could say heart is much better than May 2011, and better yet since May 6,2020 procedure. I appreciate your honesty and ‘fight on’ attitude!

[xpbdb in reply to depotdoug]

🙏👍

[larry_dammit]

Wow, I too have had a problem with fluid retention, after fighting this getting up 3 times a night and feeling like my bladder was never empty I broke down and went to my urologist. Yep you guessed it now I’m on self catheters, a week into it and still getting some blood when I pull the catheter. One good side is I can usually sleep till 5. 🤪🤪. Good luck there warrior 🙏🙏

[Muffin2019 in reply to larry_dammit]

When they pumped the water in mine, they put about 275 mil in and I peed out 200 ml, said that was good, you never completely empty your bladder. Last night went to bed at 2, up at 4 to pee then 6, then got up at 8 due to a cramp in one leg from one of my cats lying on it, I would have slept longer. I have been wearing depends for a few weeks before all this, still wear at night after cath removal after they leaked due to not getting up in time, hopefully things will get back to normal now. Wearing them day just for security to know if I can not make it then let it go.

[Muffin2019]

Recently I had retention due to a drug prescribed by my oncologist to help overactive bladder, ended up in ER and drained off 2 liters of pee.. I have had the cath in for 11 days, took it out last Wednesday but have had pain when peeing after. Been taking tylenol and this morning no spots on the depends I wear at night. I actually only got up twice to pee, better than the last days, I read that you lose the muscle control for 24 to 48 hours after it is out. Things are better but hopefully it solved the problem, I am printing these posts for future use. It was nothing to take out the cath and the nurse went in the hallway exclaiming, he peed so have to go back at the end of September to be checked. He doubled the flomax and taking it before bed, what time do anybody else take theirs ? I would think to split one at night and one after lunch would be better as the meds work longer and more even. He is the same euologist that did the biopsy for the cancer over 2 years ago so he knows me, kind of reassuring, refers to me as the nice gentleman to his staff. He is also happy about the cancer treatments and where I am.

[dadzone43]

You are the "beneficiary" of fee for service medicine. Urologists are surgeons. They get paid (generously) for doing procedures. It would be reasonable to question doing a procedure after a single sighting of blood and two negative urinalyses. Regrettable.

[Blueslover]

Self catheterizing is not that bad. I've had 2 episodes of stricture, and now self-cath every 2 weeks to keep the urethra patent. It's painless and only takes 5 minutes or so.

[billy1950 in reply to Blueslover]

Hi,

What kind catheter do you have? I didn’t realize you can leave it in for two weeks.

[Blueslover in reply to billy1950]

Time has passed since that post. My radiation cystitis seems very much better since 40 hyperbaric oxygen sessions. Only a Foley catheter is left in place after a procedure or obstruction.What I have recently discovered is that straight catheters were damaging my urethra. At my own suggestion I have changed to coude (curved up end) catheters which are SO much easier to insert and cause a lot less trauma. I use them every 14 days

Hugh

[billy1950 in reply to Blueslover]

Hugh,

A friend told me about SpeediCath standard and uses a different one ever time he pees. Are you using the same cath for two weeks. It has a curved when inserting it…

[Blueslover in reply to billy1950]

New, sterile one each time. Cure brand. Reorder #M14C which is 14 French sizeHugh

[billy1950 in reply to Blueslover]

Thanks for your help 🤝

[Blueslover in reply to billy1950]

Best of health to you Billy

[billy1950 in reply to Blueslover]

Hugh,

I noticed another post of yours that you say you were on Lupron for 5 years…how was that? That sounds rough…Are you on any kind of HT now?

[Blueslover in reply to billy1950]

Oh yes! Still on Lupron but failed after maybe 4 years. Now added Daralutamide (Nubeqa) which brought my PSA down to undetectable again.Not too bad an experience except that one must exercise a lot and often

Hugh

[j-o-h-n]

Peeing is Such Sweet Bliss...........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/31/2020 6:33 PM DST

[depotdoug in reply to j-o-h-n]

Especially after drinking 1.75L of electrolyte exercise water. Even with my trusty Coloplast FR16 coude tip catheter.

[j-o-h-n in reply to depotdoug]

Did you mean "rusty" typo?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/31/2020 9:44 PM DST

[depotdoug in reply to j-o-h-n]

Yep gotta keep the old pipes clean. Otherwise its a no go exercising an old body.

[j-o-h-n in reply to depotdoug]

I agree..... nothing like having them blown out..... Caution, exercise can make you young again.... and who wants to be young again?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/31/2020 9:55 PM DST