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
oldbuzzard tom86211
Posted
The more I hear your description the more it sounds like overactive bladder to me, not classic nocturia. Because this happens during the day too, its not just a sleep issue. Have you measured how much volume is there each time you go? My guess is not all that much.
If your problem is overactive bladder, Myrbetriq will help. It takes a couple of months for it to be fully effective, but many have some improvement in a matter of weeks. The side effect profile is really low too.
Botox is really the best treatment for overactive bladder - but I would see if you get some relief from the meds before trying it. Typically, they make it better but not perfect and botox can make it close to perfect. The chances of needing to cath afterword are really low if you use a doc who has done a lot of botox for bladder issues and knows what they're doing. If I'm right, you can probably get your score down to below 10.
Let us know how you do!
lance42085 oldbuzzard
Posted
Make sure to ask for samples of Mybetriq from your urologist. As I noted, I did the research and asked about it. The doc went "Oh, I think I have samples of that." (jeez) I got two weeks worth and that did help.
tom86211 oldbuzzard
Posted
The Myrbetriq is almost 20x more expensive than the trospium that I am currently using, and the literature shows results are about the same. Reading about the Botox - 24% chance of UTI, and 31% chance of having to self cath. On the company web site it says one should not do the Botox unless one is willing and able to self cath, which I am not able to do. So, that's out, unless it's my last option.
TKM lance42085
Posted
Lance,
Your reply did not fit on the page. I copied it and am re-posting it:
"Make sure to ask for samples of Mybetriq from your urologist. As I noted, I did the research and asked about it. The doc went "Oh, I think I have samples of that." (jeez) I got two weeks worth and that did help."
Thomas
TKM tom86211
Posted
Tom,
You might have bacteria adhering to your bladder walls. They may be putting up a biofilm that protects them from your body's defenses. Bacteria can irritate the nerves causing the sensation of having to eliminate. If this is the case two things may help. One is D-mannose that will make it difficult for bad bacteria to stick to your bladder wall, cranberry juice is similar. The other is a biofilm disruptor, like serrapeptase, garlic, oregano oil, or coconut oil. I started taking D-mannose daily and it has calmed my bladder down. The best way to use garlic is to crush it with a garlic press and put it on toast with olive oil or coconut oil. You can also chop fresh garlic into small pieces and eat it on toast. You can also eat small pieces of garlic along with a bannana to help it go down.
Once when I had a flexible cystoscopy the Urologist turned the cystoscope around so that I could see the bottom of my bladder on the monitor. It was rounded up due to enlarged median lobe, but the lower 1/4 was also redish. The Urologist didn't seem concerned about the red color, but I have always wondered if it was due to bacterial irritation.
Another thing that can cause the sensation of having to pee is having to do a bowel movement. The nerve signals seem to be mixed to a certain extent. If that is the case you might try more fiber in your diet, like fruit, vegetables, salads, bran cereals , etc. Also enough liquid early in the day to keep it moving.
Hope this helps,
Thomas
tom86211 TKM
Posted
Thomas,
All good ideas. I do have d-mannose and was taking it for a while, but stopped. Will resume. You are also correct about the bowel movement. I am OK in that department - very regular. I eat a lot of vegetable and salads and supplement with olive oil, so all is slippery. Being even slightly constipated causes urine retention, then after a BM the urine flows out much easier.
Tom
robert42382 tom86211
Posted
Tom,
Ive had similar nightly patterns. My GP doctor prescribed doxepine to take before bed. I sleep all the way through and feel better for it. I dont take them every night now, only when I am starting to get back in that routine. I got overly sensitive to every feeling in my body and was constantly getting up and this broke the cycle. Ask your doctor if that is a option for you.
Rob
tom86211 robert42382
Posted
Robert,
I will check this out, thank you.
Tom
geoffrey61005 tom86211
Posted
Hi Tom. i had a successful urolift where the urethra was completely cleared of constictions by the prostate.
I am still up 3 - 5 times a night and the urologist says when the bladder loses elesticity it doesn't recover the ability to expand and contract. This is called trabeculation. So in my case I'll just have to live witn it as at least it won't become an emergency, ie catheter etc.
Geoff
tom86211 geoffrey61005
Posted
Geoffrey,
Well, 3-5 times per night is not great, but I'd be happy with that. I continue to research possible reasons for the bladder irritation.
Tom
tom86211
Posted
Re: Radiation Cystitis
I have been learning a lot in recent weeks about my condition (frequency/urgency/nocturia) and my situation is different than others here in that I had radiation for prostate cancer five years ago. The cancer is gone, but this frequency/urgency/nocturia started up about two years ago and despite a PAE and TURP, continues with a present IPSS score of 29.
Here's what I have learned from both my primary urologist and a second opinion: I have what is called radiation cystitis - that is, irritation of the bladder due to the effects of the radiation. It normally starts about three years after the radiation and there is no solid cure - it might improve on its own, might stay the same, might get worse over time. There are some treatment options that have been mentioned on this forum - the most promising is botox injections into the bladder muscles, but that has some drawbacks. Most men here have NOT had radiation for prostate cancer prior to their BPH symptoms, and most of the BPH procedures do fix their issues, at least, to some extent: REZUM, Aquablation, TURP, Urolift, GL etc. However, all these do is to clear the prostate out of the way so the urine can flow from the bladder. Now three months post TURP my flow continues to improve - very glad I had that done. But, the bladder irritation and lack of sleep continue to be issues, especially getting up 6-10x per night.
I had two choices in 2014: prostate removal (90% of all men have this done), or radiation. I chose the radiation because of all of the stories I read about the long recovery from RRP and the possibility of permanent incontinence. I decided I would rather have some reduced flow than to not be able to control the flow - didn't want to wear Depends for the rest of my life. But now, I am rethinking my decision. Turns out it can take a year to get back full continence after a RRP, but after that, no prostate, no BPH, no radiation cystitis. Had I made that decision I would never have had the PAE, or the TURP, and now, maybe, I would be sleeping through the night. Who knows?
So, for those of you who have elevated PSA and find out you have prostate cancer, I'm giving you some additional things to consider. I am not promoting either RRP or radiation, just letting all know that my cancer is 100% gone, but the side effects have been rough over the past five years and continue to this day.
Tom