TURP succesful but nocturia continues - getting very concerned
Posted , 15 users are following.
Over the past months (years actually) I have received invaluable advice from so many here and I am very grateful. Can't imagine what I would have gone through without this forum.
Anyway, had a bipolar TURP in early April and have posted here about the progress. It definitely was a success, in that I can empty my bladder much more easily - flow stronger, takes much less time to empty my bladder and I have had no issues with incontinence. My uro measured my PVR two weeks ago and my retention was 0 . Had been in the 170-200ml range prior to the surgery, so the TURP worked!
However, my nocturia continues with no progress. I am still getting up at least 6-7x per night and sometimes more. My bladder always feels irritated except right after I have cleared it after my hourly trips to the bathroom. I would estimate that I am going to the bathroom 20-30x per 24hr period.
My urologist wants me to wait this out for a while and see if the issue will resolve over time. He has suggested a treatment where botox is injected into the bladder muscles and that helps for about 6 month. After reading about this I have decided it isn't for me - fairly high probability of a UTI and need to self cath (back to retention again).
Other treatment possibilities include PTNS (percutaneous tibial nerve stimulation - like acupuncture) which I tried last year. It was slightly helpful but required 12 weekly 30 minute sessions - had to pay for each session (copay). Yet another treatment is to have a battery operated device implanted under the skin that sends electrical signals to the nerves that control the bladder. Again, not something I would do at this point.
I am taking trospium and that is supposed to help calm the bladder, but in my case, doesn't seem to have any effect.
So, my question for this forum is: has anyone had any form of treatment for BPH symptoms that resolved the flow/retention issues but didn't resolve the frequency/urgency/nocturia issues? What happened over time? Did the bladder calm down eventually, or is this bladder situation permanent?
Just took the IPSS test again and it came in at 28 - was 30-32 before the TURP. 28 is still very high. My sleep is so disturbed that I wake up tired every morning and never feel right during the day as a result. Many here report good sleep outcomes after various procedures. Hoping that eventually I will be OK but at this point am very, very concerned.
Thanks, Tom
0 likes, 52 replies
gary37907 tom86211
Posted
ditto on the invaluable info provided on this forum. helped me through of bad times.
tom86211 gary37907
Posted
Gary,
Absolutely - my urologist doesn't say much, so this forum is my (our) support group.
Tom
timothy81571 tom86211
Posted
Have you tried not going every hour, to see if you're bladder can be retrained during the day? Just I thought as I have nothing to base this on.
tom86211 timothy81571
Posted
Tim,
I have been working on this - trying to hold off going to the bathroom as long as possible during the day to retrain my bladder. The more I research my issue the more I believe it's bladder related and not prostate related anymore. This might also apply to many here who have had various prostate procedures that didn't work for them.
Tom
steven05114 tom86211
Posted
Tom,
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Yes the BPH causes bladder damage. The prostate procedure removes the blockage from the BPH but the bladder damage remains.
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What were your urodynamic test results before your TURP? Have you done another PVR test after the last one that you mention above?
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After a successful Rezum, I am dealing with bladder damage issues as my PVR's are still over 100 ml. My IPSS has gone from a 28 or 29 to an 8 or 9 now though.
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Steve
tom86211 steven05114
Posted
Steven,
My uro never did do a urodynamics test, ever. Never mentioned it. My PVR test was done on June 6th. I can tell that I am able to empty my bladder now, but it takes several attempts. The first pee is usually 100-150ml then over the next 5-10 minutes I can get out little 25ml squirts. Then, nothing. That's what I did before the PVR test and results came back at zero.
There is a difference between bladder damage and bladder irritation. I don't know if I have any bladder damage or not, but there certainly is constant irritation. I took a half antihistamine tablet last night and the bladder irritation was substantially reduced. I am now thinking that at least part of what I am experiencing is a result of an overproduction of histamines.
Your IPSS score is great!!! Hope I can get mine down in the future.
Tom
arlington tom86211
Posted
Be careful with the antihistamines. That is what sent me in to permanent retention 5 years ago!
steven05114 tom86211
Posted
Tom,
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I am surprised that your urologist did not do a urodynamics test before surgery and never mentioned it. What did your cystoscopy look like? It may identify the cause of the bladder irritation.
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My 1st pee is usually about 100 to 150 ml too and I do feel empty. The next few pees bring me up to about 200. I still have PVR's over 100 due to bladder damage observed in my cystoscopy.
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Steve
tom86211 steven05114
Posted
Steven,
My uro doesn't say much. He did the cysto last Feb and said all looked OK. A few days later I got a bad UTI and bleeding. I will not do that again. I took Cipro for the UTI and had a reaction, and am still not recovered, so I don't want to have anything shoved up my urethra unless it's absolutely necessary.I did not see the images.
My 1st pee is also about 100-150ml and exactly like you the next few squirts bring me up to almost 200. This is exactly what I did before my PVR ultrasound and was not expecting 0 PVR.
Tom
steven05114 tom86211
Posted
Tom,
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I would not work with a doctor who doesn't say much. This is a red flag for me.
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I am surprised that the urologist did not show you what they were seeing when the cystoscopy was being done. I got to see the same screen output as the urologist who explained what they saw. Seeing everything was very cool too. After the cystoscopy, I decided to move forward with my Rezum which cleared the obstruction.
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The good news was the median lobe pushing up the base of my bladder which confirmed my suspicion of a median lobe obstruction that lead to complete blockage. The bad news was the moderate trabeculation which could explain my PVR's over 100 ml.
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Was your cystoscopy done with a rigid or a flexible cystoscope?
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Steve
tom86211 steven05114
Posted
Steve,
I have no idea what type of scope he used. I just stretched out on the slightly inclined table, and he gently slipped the scope up the tube, and the whole thing was over in a couple of minutes. Not much pain or discomfort. I don't know what type of scope he used, and after he said that all looked OK. The reason he did the scope was that he said he wouldn't do a TURP without doing a scope first - that's reasonable. I just didn't see the screen and he didn't say much after. If I want to know anything I have to ask questions. From what I have learned he's a great surgeon - everyone agrees about that, but he's not very personable or communicative. I've been with him for about 7 years and I have no issues with his advice. But, if it wasn't for this forum I really wouldn't know what was going on.
Two years before I had my radiation for prostate cancer in 2014 I was discussing treatment options with him and he did say that the primary complaint about a RRP (radical robotic prostatectomy) was the incontinence. This made me really look at other treatment options. Now he tells me that the radiation might be the reason why my bladder is so sensitive. Great. Had I known five years ago that in the future I might have terrible insomnia I might have done something else. There are just so many options and possible side effects. It can be a full time job just to keep up with everything. Not like the dentist - you have a dental problem, they fix it, and off you go. With the prostate there are 5-10 treatment options for every situation and each one has it's own unique set of issues, both at the time of the procedure and years down the road.
Tom
richp21 steven05114
Posted
I need some help here. What is the difference between the urodynamics test and a flexible cystoscopy ? I thought they were the same test. Thanks!
TKM tom86211
Posted
Tom,
If you had radiation therapy in 2014 it is possible that some nerves could have been damaged from it. The bladder calming medicines like Myrbetriq could help. The botox injection might also help desensitize the nerves.
It is difficult to work with a Urologist who does not keep you informed about what is going on. You should ask him before the cystocopy if you can see the screens, and if he could make a digital copy of it for you. I believe you are entitled to it by law.
Thomas
steven05114 richp21
Posted
Rich,
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A cystoscopy is a camera at the end of a tube that goes up the urethra and into the bladder to look around so it can identify the cause of the obstruction and condition of your bladder.
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Urodyanmics tests are a series of tests to see how well you bladder can fill and empty. It tests the sensation of filling and ability to empty so it tests both nerves and muscles.
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You can do an Internet search for both of these to get more information.
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Steve
tom86211 TKM
Posted
Thomas,
My uro also suggested that what I am experiencing might be related to the radiation in 2014. I said to him "but that was five years ago" and he replied that it can take that long for the effect to show up. This possibility was never mentioned to me prior to the radiation, nor did I read about it in any literature. I was prepared for ED, but not insomnia. Anyway, what's done is done. At least the cancer is 100% gone.
Mybetriq is not generic and not covered by my insurance, so very expensive, but I am taking trospium - similar and about as effective. In my care, doesn't really help much if at all.
When I got the cystoscope last year that was my first and I didn't know I could look at the screen.
Thanks for your reply,
Tom