Don't know what to think anymore

I completely agree with Nealpros.  You are throwing darts againts a wall if you don't know where the problem is.  I had a complete urodynamics which measures the electrical signals the brain sends to the various parts of the urinary system.  This was to rule out a neurologic cause.  If the brain signals are there, the bladder pressue is good, then there is somthing squeezing off the flow.  There is a sphincter muscle at the base of the bladder (Bladder Neck) that has to open fully, then urine flows through the prostate, and finally one more sphinter muscle after the prostate that must open fully.  From there its out the penis.  Get these parts diagnosed>  Its a bag, two valves and a hose.  Get each part tested and then you may find the problem. 

I am on this path myself right now.  My problem started at age 25 with a sudden decrease in flow.  That was over 30 years ago.  The urologists had no clue.  I eventually gave up and lived with it until my mid 50s until it got much worse.  It was the prostate enlarging that caused the worsening.  I had a PAE in November of 2014 and it helped a lot but not enough for me to get off Flowmax.  I am having a cystocopy on Wednesday to verify that the path through the prostate is open.  If it is, then it has to be one or both of the valves (sphincter muscles).  Good luck to you and don't give up. 

A referal is in the works.

Thanks.

This urologist, to his credit, has been doing everything in his power to prevent me from having to need an operation.

It was me begging him 2 months ago for some sort of operation, because my symptoms had become so intolerable, that lead him to refer me to the surgeon for the cystoscopy.

It's the old hammer and nail problem. The carpenter only knows one thing to do with a hammer and a nail. The surgeon only knows how to cut. Be very careful of the surgeon's recommendations. You seem to be on the right path now. Get a diagnosis based upon the facts and test results before you do anything permanent. You should be able to get relief with drugs during this process, but the drugs will probably have bad sexual side effects, so pursue the diagnosis with purpose and all deliberate speed.

That is very true.  We need all the information to fined what is best for us..Good health to all  Ken

I've tried all the drugs for BPH.

All the alpha-blockers have made my symptoms worse.

Alfuzosin seemed to help quite a lot for about 3 months and then stopped.

Daily Cialis helped at first also for about 3 months and then stopped.

A,nd although I'm still taking it it isn't helping my urination symptoms anymore and hasn't helped for quite some time.

It does help with the sexual side effects of the Avodart though.

The Avodart, if it is helping, is taking longer than it's supposed to take, although my symptoms during the day *are* noticeably better.

I've tried a drug for OAB too.

The Vesicare makes my symptoms worse.

I've tried all the supplements too.

At one or two points in my life they seemed to help and then just stopped working too.

Either this is a food sensitivity, or it *is* BPH and the Avodart needs more time to shrink my prostate even more (even though it was never that enlarged to begin with) or there's something more serious going on - like cancer (even though the cystoscopy showed nothing) or there's something else (as yet to be determined - like nerve damage ) going on.

I *haven't* been able to get relief with drugs.

That's the whole issue.

I was mostly resigned to have an operation for BPH, but eveidently my cystoscopy results say I don't have BPH.

Why not use a catheter?

If that is what it says you have to be glad of that.

Hmm.

I hope it doesn't come to that.

But my problem doesn't seem to be that I don't void my bladder fully when I go to the washroom.

I'm pretty sure it empties fully or pretty close to it every time.

The problem is that, at night, I wake up every 1.5 hours (1.5 is the average these days, almost like clock-work) feeling like I have to pee.

When I do pee, there's not that much that comes out, but it feels like my bladder is empty.

I usually have to massage my lower stomach area to stimulate the bladder so it empties.

My understanding is that a catheter would just allow me to fully empty my bladder.

So unless I'm wrong, I'd just be using a catheter every 1.5 hours.

Unless you're talking about me wearing the catheter in bed with some sort of a bag to hold the urine so I don't have to get out of bed to pee?

I hate to think that something like that is in my future but it probably is.

My guess is that I'd still wake up every 1.5 hours but just wouldn't have to get out of bed.

I think i'd rather wear Depends if it comes to something like that.

Sheesh.

This isn't going to end well.

 

Try anything you can before you have to have any procedure.  Do you sleep on your back how much water do you drink before bed. Try not to drink before bed and if you sleep on you back try you side that would get the pressure of the kidneys.  Ken

I could be jumping to conclusions.

But in my conversation with the surgeon who interpreted my cystoscopy that was my take on what he was saying.

He ended with a suggestion that I get my uro to prescribe something for "nocturia" or at least that's the word I thought he used.

At first I thought he was talking about a specific drug called nocturia or something like it but after Googling it I found no such drug.

I don't know if a cystoscopy is capable of diagnosing small obstructions of the urethra itself around the vicinity of the prostate or if it just allows inspection of the bladder itself (as well as measuring the fluid flow from the bladder).

But my understanding is that even if your prostate is only slightly enlarged, if it's enlarged in specific areas in specific ways, it can cause symptoms such as mine by putting pressure on the urethra.

Maybe given even *more* time (it's been about 8 months so far) the Avodart can help my symptoms?

I see my uro again in mid July.

I'll discuss things further with him then.

I'm also supposed to be getting a refferal to another uro and when that happens I'll get another opinion.

Until then, I'm just living with all of this.

I don't plan on fathering any children but the impotence as side effect stories with pretty much *all* of the surgeries makes me think that maybe i should just shut the f... up and learn to live with things the way they are.

But I'm not even a candidate fror those surgeries, evidently.

Oiy.

 

"Try anything you can before you have to have any procedure."

I thought that that was what I'd been doing, and I had given up

But I was trying things with a diagnosis of BPH in mind.

I sleep on my side genreally, sometimes on my stomach.

And I am very aware of my late evening/night fluid intake.

Thanks.

The cystoscopy would show any strictures etc. in your urethra as well as where your prostate could be pressing on your bladder so you are in the clear.

Some things you could Google that people here and on other NG's say have helped with night time symptoms. An antihistamine before bedtime but not if your prostate is enlarged as it could cause retention. Melatonin helps with sleep and reduces night time urination or an over the counter anti-inflammatory at bedtime. Someone takes a Cherry Juice with a high melatonin content. 

Since my last laser procedure two years ago my flow has recently been very variable. I had a cystoscopy in March that did not find any reason for it. 

Really the problem is that you don't really need when when you wake up and try to go. I'm not sure how that can be remidied as it is quite a common problem. Using a catheter before going to bed and it might get through to your brain that your bladder is empty and it need not wake you up. Wearing one overnight with a bag for a while with a bag should let you sleep. You could discuss it at your next appointment.

Presumably with Depends you would still waken with the urge to go although you need not get out of bed.

Good luck.

Thanks for the cystoscopy clarifications.

As I said, my prosate is somewhat enlarged (approx 41cc, I assume still) so I don't know about the antihistamine, but I'll try it anyway.

I already take melatonin on a regular basis.

I've also been in the habit of eating a bowl of frozen cherries (partially thawed) as a later night snack lately.

But I think the suggestion to look into salicylate sensitivity is a good one, and cherries are quite high in salicylates.

I do have several other symptoms of salicylate sensitivity so my next experiment will involve cutting out as many of these types of foods as possible.

The diet I'm on now, which has helped me lose about 30lbs so I hesitate to discard it totally, happens to be VERY high in foods with large salicylate content.

But my symptoms started many years before I went on this diet.

I started on this diet right around the same time I started on the

Avodart though, so maybe they're cancelling each other out?

Looking for any common denominators as far as salicylate-rich foods that I've been eating since my symptoms started over 10 years ago I keep coming back to broccoli which I've eaten a lot of for many years.

It all depends on pressure on the bladder from the prostate and your cystoscopy was OK. I had a friend with a very small prostate that had him self cathing several times a day until he had a PVP.