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
arlington tom86211
Posted
What has helped me most is self-cathing before bed.
The only other things that have helped me at night is cutting way down (or quitting) on alcohol and caffeine and reducing overall liquid intake (to about (48 ounces daily)
tom86211 arlington
Posted
Arlington,
I can pee just fine - just can't seem to sleep longer than 1 to 1.5 hours at a time. Possibly a bad habit from the past couple of years of retention. Seems I wake up no matter how much liquid I have had prior to going to bed.
Tom
arlington tom86211
Posted
I was that way prior to self-cathing.
Sounds like mixed results re your PVR - so probably still an open question whether self-cathing prior to bed would help. I'd give it a try.
My situation is different in that I went in to complete retention in 2014 so I don't have the option of peeing naturally.
Best of luck!
tom86211 arlington
Posted
Arlington,
I tried to cath a few months ago before my TURP and was totally unable to complete the procedure - only got the cath in 1 inch, terrible pain, and will never do this again. I did cath a few times after five weeks of Foleys in 2014, but it wasn't easy. We're all different. I would rather just have a procedure and not have to deal with catheters. The bipolar TURP was easy, even easier than the PAE I had in 2017. I seem to be able to pee just fine now - maybe not as strong as I'd like, but it works.
From what you say you've been cathing for five years - I would have had some operation years earlier so I could live a normal life.
Tom
oldbuzzard tom86211
Posted
Get a prescription for Myrbetriq. It may solve your problem.. Give it 60 days
tom86211 oldbuzzard
Posted
oldbuzzard,
I checkout the Myrbetriq. It's similar to the trospium I take but almost 20x more expensive! Not covered by my insurance.
Tom
oldbuzzard tom86211
Posted
Tom - I would try it for 2 months if you can afford it. Very few side effects and it works better than the older meds. It could be that you're not responding to the one you're on. Most insurance companies will allow appeals for not covered drugs if you've failed on the covered ones. Ask your doc to try.
How much do you pee when you go? That's an important part of the puzzle.
lance42085 tom86211
Posted
I agree with Old Buzzard. I went on a two week run on Myrbetriq, per my own insistance with the urologist. It did help, along with the supplements previously suggested. I also just had a wellness check and found out that my testosterone levels were low (263.) So, I've added some test booster supplements and have found them profoundly helpful in night time urination, to the point that I sleep through the night in the majority! My theory is the testosterone boosters help the body retain fluids.
tom86211 lance42085
Posted
Lance,
I had my testosterone checked a few years ago but haven't done so recently. Certainly looking at again. Thanks,
Tom
bruno01445 tom86211
Posted
Hi Tom,
Treatment for BPH : I am taking Saw Palmetto capsules, Pygeum bark extract capsules and pumpkin seeds oil capsules. Before, I used to wake up 3 or 4 times in the evening.Now I sleep all night and wake up for a wee around 5 am or 6 am. I was diagnosed in November 2017 and the urologist prescribed me Tamsulosin. I took it for few months but I have to stop it due to side effects.
Don't drink coffee, tea or alcohol before going to bed. I stop drinking at 5 PM because I drink a lot of water in the day.
Hope this natural treatment will help you.
tom86211 bruno01445
Posted
I don't have the BPH retention anymore, but still have the nocturia. Very good that you can sleep better. My TURP didn't seem to do anything for my sleep issues, although others who have had this procedure have been helped.
Tom
JerryR tom86211
Posted
A lot of nocturia (nighttime urinating) is caused by excess fluid that collects in your body during the day. Gravity causes it to collect primarily in your legs. When you lie, supine, in bed at night, much of that excess fluid leaves your legs and enters your general blood volume. The body responds to this extra fluid by creating more urine at night. This can be combated in a few ways. 1.) by reducing fluid intake - no fluids after 9pm or 8pm. 2.) wearing compression hose during the day or evening to reduce the fluid collecting in your legs. 3.) there's a drug called Desmopressin, which I'm not very familiar with, but it reduces urine production. 4.) some people do the potato chip routine - eating some thing very salty like potato chips, just before sleep. The excess salt raises the sodium level of your blood which causes the body to secrete anti-diuretic-hormone which reduces urine production. 5.) if you happen to be on a diuretic for high blood pressure, taking it around 5 or 6 pm (instead of in the morning) might dehydrate you a little just before going to sleep and reduce urine production. Good luck to you, Tom, with this very common and very annoying problem.
tom86211 JerryR
Posted
Jerry,
I don't think my sleep issues are due to fluid retention. When I was having retention issues my bladder would wake me up, but now I am able to clear my bladder, but I am still waking up frequently at night. This is a mystery. My bladder seems to be irritated almost all of the time. No problem during the day - I can always find a bathroom. But at night, I have to completely empty my bladder before the irritation goes away and I can fall asleep again. I am thinking more and more that this is a bladder issue - just wondering if this will resolve or be permanent.
Tom
WilliamUSA tom86211
Posted
I believe the fluid retention mentioned by Jerry was in your legs, not in your bladder. Your PVR may be zero, but the fluid collecting in your legs during the day may be the culprit when you lie horizontally at night. Jerry had some good suggestions that could help you. Good luck!
Bill
lester90053 tom86211
Posted
Suggest you seek several professional opinions until you find the right one. Avoid herbals and supplements. No doctor would recommend them.
tom86211 lester90053
Posted
Lester,
I may have to schedule an appointment with a sleep specialist about this. However, the constant bladder irritation has all of the symptoms of overactive bladder, and I have been looking for solutions in that category, because my prostate is no longer blocking the urine flow.
Tom
steven05114 tom86211
Posted
Tom,
.
A long time ago, long before my BPH, I worked with a sleep specialist. It was well worth the time. You can do a search on "sleep hygiene" and see some of what will be covered.
.
Also I would like to second, self-cathing before going to bed, avoiding herbal and supplemental remedies, and NOT to add salt to your diet as an earlier poster incorrectly suggested.
.
Good luck,
.
Steve
tom86211 steven05114
Posted
Steve,
I am careful about salt because I have had some issues with blood pressure in the past - now OK. I am going to ask my doctor for a referral to a sleep specialist.
I have tried self cath in the past and it was painful and difficult, and before my TURP I tried it, but was unable to complete the task. I was using a 14fr, but perhaps something much smaller might work. Anyway, I am able to clear my bladder now so CIC doesn't seem necessary. Seems that no matter what I do my bladder is always slightly irritated. I have been researching this issue and believe I am moving closer to some understanding about what's going on.
Tom
Tom
steven05114 tom86211
Posted
Tom,
.
Can you please post a summary of your research results? Note that this website can have problems with posting links in the discussion forums but links are OK in private messages.
.
Steve
arlington tom86211
Posted
What is your post-residual volume?
tom86211 arlington
Posted
Arlington,
Last PVR test done June 6th - no PVR, zero, but it took several attempts to clear my bladder over a 5-10 minute period.
Tom
lee56659 tom86211
Posted
If it takes 5-10 minutes to empty then your PVR isn't really zero is it? It seems like the proper way to measure it would be to void until the flow stops, squirt out a few more drops, then measure. Does your urologist consider your PVR zero if it takes 5-10 minutes to void?
JerryR lee56659
Posted
I think PVR (post-void residual) refers to what's left in your bladder after you pee - not how long it takes you to pee.
tom86211 lee56659
Posted
Lee,
Prior to the TURP it took me 5-10 minutes to try to empty my bladder, but I still had 170-200ml of retention. This latest time I had 0 retention, so a much better outcome. It would be great to be able to completely empty the bladder on the first pee and be done with it. That takes about 25 seconds, then the pee stops, then a few minutes later I can feel the need to pee out a little bit more, then repeat that another time. After about 10 minutes I can get back to sleep because my bladder doesn't feel irritated anymore. So, my issue isn't really retention anymore, just a hyper sensitive bladder.
Does your urologist consider your PVR zero if it takes 5-10 minutes to void?
I just went to the bathroom and then in the exam room the nurse measured my PVR with the ultrasound device. There was no discussion about how long it took to achieve this outcome, or how many squirts.
Tom
steven05114 tom86211
Posted
"Does your urologist consider your PVR zero if it takes 5-10 minutes to void?" This is a good question. If it takes 5-10 minutes and double or triple voiding to get to zero, then does the final PVR really count? It certainly suggests remaining LUT problems.
.
S
tom86211 steven05114
Posted
Steven,
Yes, you are right. However, the situation is better than before the TURP. Before my PVR was near 200 and it took me 10-30 min to clear enough of my bladder so that I could get back to sleep. Now, 5-10 min is much better. But still, the bladder hyper sensitivity continues day and night. I just don't know if this situation will resolve or if I am stuck with this for life. If only the trospium would work. I have had no issues with side effects from that but it's only minimally effective.
Most people just go to bed and wake up in the morning. Their bladders are able to hold a large amount of urine and they don't wake up . They go to the bathroom in the morning and wooosh, the bladder is empty, and they go about their day. But with this nocturia, the bladder sensitivity is always present, day and night. A "normal" bladder can hold a lot of urine before the sensitivity kicks in, but a bladder that had become hyper sensitive just can't hold much urine before sending signals to the brain.
I keep reading about overactive bladder and it's a huge issue for both men and women. With women there is no prostate so the overactive bladder syndrome is obvious. But with men, the issue is almost always blamed on the prostate, resulting in different treatments, that often fail to solve the problem - as in my case.
I'm sure there are many here on this forum who have had other treatments, PAE, Urolift, Rezum etc. and they still can't get relief. I read their stories every day. Wonder how many of these procedures could have been avoided if only there was a way to know in advance that the problem was the bladder and not the prostate.
I had to have the TURP to know. It was a gamble. I was hoping for relief, but results have only been partial to date. Sometimes the only way to know is to do something and see if it works.
One good thing about the TURP was the lab report on the removed tissue - cancer free. That was a big psychological relief.
Tom