Prostate or Underactive bladder? At my whits end

Men's health
1

Hi everyone I'm new here and was hoping for some advice.

I'm 40yo in Florida. At 38 I started having urination problems here and there, but didn't realize I was retaining. My family doctor had a MRI ordered which revealed a 1.5" bladder stone and sent me to a uro who broke it up in January 2015. In December he went in and removed four pieces that were too large to pass. He never seemed interested in helping me figure out what was causing my urination issues. He told me I'm "wide open".

In seeking a second opinion the receptionist let it slip that he diagnosed me with an enlarged prostate. The new doc works under the same umbrella and can see the notes from the first doc. I met with the new doc last week who did a scope in office and claimed my prostate looks normal and he thinks I either have a tight bladder neck or underactive bladder.

I don't know what to think at this point. Can they really tell of the prostate is obstructing just by looking at it? Wouldn't it seem better to find out how many grams it is exactly? He sent me home with caths on Thursday and I had to use one last night. I haven't urinated but dribbles today and I'm on my way home to cath now.

He ordered urodynamic testing which I've scheduled for next week.

I'm just so confused. How can my notes from the first doc say enlarged prostate and the second doc thinks it's something different?

2

There are a number of things that can cause urination issues: UTI (infections), prostatitis (inflammation), BPH and diet.  Prostatitis and BPH are typically the top culprits. But at 40, the first two are more likely than BPH.

I had been told for the past several years I had BPH - which was assumed based upon age and symptoms. When I had a 3T MRI as part of my active surveillance protocol for prostate cancer, the radiologist told me I had no signs of BPH but instead I had chronic inflammation.

Earlier, I had tried 3 of the common alpha blockers (Flomax, Rapaflo, etc) - with minimal effect. Finasteride helped greatly with the inflammation but did not help much with the basic urinary issues (slow start, low flow) and after 6 months, the side effects were worse than the symptoms.

By cutting out caffiene and alcohol I have been able to reduce the frequency and urgency issues to the lowest they have been in a decade, but the slow start/flow issues remain. Had a cystoscopy recently which shows some minor obstruction in the lower urethra near the external sphincter and am considering Rezu to treat that.

My suggestion would be to keep looking for a urologist that will take an interest in your issues and work with you to help find the cause and a solution for you vs simply treat the generic symptoms which most seem to do. I am currently on my 5th uro in 3 years. On your own you may want to consider trying to identify things in your diet that may contribute to your issues, including medications. I went on a very simple and bland diet for two weeks - no dairy, eggs, nuts, shellfish, caffiene, alcohol, etc - none of the top common allergens. The only ones that had a noticeable impact for me were caffiene and alcohol. Both will double both my frequency and urgency for approx 24hrs after consumption, as well as make my flow worse. 

It can be very frustrating seeing multiple doctors, getting the same generic answers with nothing more to show for it than a different perscription. Do your own research, keep notes of what you eat/how you feel, the specifics of your urination and it may help you, help the doctors identify what is plaguing you.

Good luck!

 

3

Yeah I can't figure this out. I have had a UTI in the past but the doc took a urine sample this past Thursday and didn't mention any sign of infection. I took two flomax last night (usually take one) and woke up at 4am to go. When I woke up at 9am to get ready for work I was able to pee out 150cc. I cath'd immediately thereafter and an additional 250cc came out.

Hardly had any urge to go all day and only had a cup of coffee and a 20oz bottle of water. When I did have a slight urge hardly any came out. Got home just now and cath'd out 550cc. Have a slight pain now too (maybe because bladder is empty?).

I used to be a heavy Diet Coke drinker (six 16oz bottles a day) but gave that up last year. Now I'll have one bottle every other day or so.

Some mornings I'll have a crazy strong flow but also quite a bit of pressure.

I've been on seroquel since '07 (250mg:night) but uro didn't say anything about that.

4

While you do your research, go back & check your first MRI and see if it does cover the prostate & pelvis area. If it does, the radiologist who read the MRI slide can roughly estimate the size of your prostate. If he missed it, request a second read or take your MRI to a second opinion. The MRI will tell the doc if you have a BPH or not. Other problems like inflamation or infection could not be seen from MRI. But at least you need to go thru a process of elimination first with your old MRI for BPH.

I agree with 2Tim In Most cases. But in detail every one has somewhat different outcome. Good luck.

5

I did pull the first MRI from January 2015 and its noted the prostate is "unremarkable". Should I have another done?

6

The only time all day long that I have a remotely decent stream is first thing in the morning, or if I've had a few diet cokes throughout the day.

7

What about a rectal ultrasound of the prostate. Will that gauge its size?

8

Hello sorry that your having a problem.  I live in florida also  Where in Florida are you.  My urologist I think is great he is younger and I believe he care more about a mans problem.  Take care  Ken

9

I am in Tampa.

10

I'm just having a hard time believing the hypothesis that it's underactive bladder. I don't fit the age profile, I've never had a neurological disease like MS or back disc problems. No reason for my bladder to just up and stop working.

If I had underactive bladder one would think flomax wouldn't work - but when it does it's like the flood gates have opened in the morning.

I am keeping a bladder diary as of this morning and will take that to my urodynamic session on Thursday. I'm also going to ask my primary doctor for a MRI script and rectal ultrasound to determine size. Perhaps another urine culture too.

11

I live in Orlando.  My urologist is a good guy.    Was on some pills before I had my urolift.  I turst him.  And he tells me everything in a way I understand it.  Not lke some doctor. Yes it had to understand if you never had a problem.  Good luck  Ken

12

2T. I believe so. It shows by the gram as I had the same when doing biopsy.

13

You're young for enlargement. I'm 66 and I've had slightly similar experience where one urologist assumed I had enlargement from my symptoms and scheduled me for a TURP whereas my usual consultant said he didn't want to do it because my prostate isn't very enlarged. He recommended I try cutting out caffeine drinks and minimise decaf tea and coffee and it might take a year to see improvement. In fact I'm peeing again without Tamsulosin after a few weeks of cutting out caffeine and tea and coffee. I think bladder neck irritation is my main issue, but I had a series of UTIs last year and that threw out the whole system and the theories of causes. Now that that's cleared by low dose Nitrofurantoin over 3 months, the picture seems a bit clearer.

14

It just gets weirder and weirder. I saw the nurse at the uro office today (doc does surgeries on Tuesday). I gave a small urine sample and by no means emptied my bladder. Nothing unusual on the dip stick, so the nurse has me cath myself and out comes nearly 600cc of urine and visible blood.

She is sending the sample off for culture. Since the doctor wasn't in I wasn't able to get an antibiotic (if I even need one who knows). When I got home I tried to go on my own and a couple drops of blood came out but nothing more. A few minutes ago I cath'd out 350cc of bloody urine and at one point the urine got stuck I think a clot got caught in the tip. And it smells weird now...

I made an appointment with my family doc on Thursday to have a abdominal MRI and a transrectual prostate ultrasound ordered. And maybe a round of cipro if he thinks I have prostatitis.

 

15

That does sound like you have something else going on. If you live in a large metro area or can drive to a major medical / research / teaching hospital, you may want to look for specialists there. The only thing I've learned in dealing with my urinary issues and prostate cancer is most of the doctors I have seen (so far 11 in 3 specialties) all have different opinions, most focus only on symptoms and churn and burn - get you in / out as quickly as possible. As a result, I take responsibility for my health, do my own research and will continue to look for doctors that will work WITH me to solve my health issues.

Good luck.

16

Tim, I'm going to give this doctor a chance. He seems interested in trying to figure out what's going on. This morning I cath'd out 500cc and had zero urge to go on my own. Still had some blood.

Maybe it is my bladder giving up on life. I'm not sure what can be done to fix that.

17

Good luck and please let us know how you are doing. Information shared helps us all.

Be well!

18

I went to my family doctor yesterday who did a DRE and said my prostate does not feel normal, and gave me a 30 day cipro supply, and ordered a MRI of my prostate with and without contrast. I have that scheduled for next Friday. Today marks a week since I had the in-office cystoscope and I can hardly pee on my own. I cath now every four to five hours and get between 350-500cc.

I got a phone call from the uro office today and my urine culture came back normal flora but indicated 50k coloniation so the doc ordered 7 days of bactrim but told me to go ahead and finish the cipro before starting the bactrim.

19

That's a lot of antibiotics. I avoid Cipro due the side effects. I'm a runner and one potential issue is tendon rupture. It's not common, but its not worth the risk for me.

It is good that he ordered an MRI, hopefully a 3T multi-parametric. There are a few interventional radiologists that specialize in prostate issues. If you are interested I can send you their names.

Good luck.

20

He also ordered some PSA 4K thing I've never heard of. He mentioned my TRT could have something to do with it but I've only been on that since October and these problems started well before then.