At my wit's end

Hi All

This is my first post here.

I used to post to a BPH forum on Usenet occasionally but it had pretty low traffic so not much useful info/input.

But this place is crawling with guys just like me. lol

I'm going to try to reduce my 10-years-plus story of woe as much as possible to bring you up to where I'm at now, which is basically the same place I was at over 10 years ago.

Hopefully someone here might have something useful to tell me.

l'll be 64 at the end of October.

Aproximately 10-12 years ago I sought medical help for frequent urination both during the day and at night.

E.g. At night I'd be waking up at intervals of 1.5 to 2.5 hours to pee.

During the day about the same.

I also experience severe leg cramps at night that are associated with waking up to pee.

I.e. If I don't act on the urge to pee, I get a cramp (usually in my  calf) and that definitely gets me out of bed.

First I went to my family doctor.

He diagnosed it as BPH and prescribed Flomax.

The drug didn't help, seemed to make my symptoms worse, and I did NOT like the sexual side effects, so that didn't last very long.

He told me to drink GatorAde for the cramps. (Didn't help.)

In the meantime I was trying every herbal concoction I could find, always with some form of Saw Palmetto in it.

Sometimes I seemed to be getting a little relief from the supplements but it may have just been the placebo effect or my bio-rythms.

After about a year he prescribe Avodart.

It didn't seem to help and also had sexual side effects that I couldn't tolerate.

He did not tell me that it would take about 6 months before Avodart can produce any symptomatic relief and I gave it up on it after something like a week.

A few more years went by and he finally referred me to a urologist.

I think this was about 5 years ago now.

The uro did some tests and then proceded to give me scripts for pretty much every BPH drug on the market: Flomax, Rapaflo, Xatrol (alfuzosin) and maybe one other whose name escapes me at the moment.

All of them seemed to make my symptoms worse.

He also convinced me to try Avodart again but it was only around 2 years ago when I realized that I'd need to stay on it long enough for it to shrink my prostate enough to get any symptomatic relief.

I also started seeing the ads for Cialis 5mg and got him to prescribe it for me.

At first, the Cialis seemed to be a God-send but after a few months my symptoms would return full force.

But it alleviated any of the sexual side effects of the Avodart so I stayed on it.

At the point where  6 or 7 months of being on both Avodart and Cialis had gone by my symptoms were still as bad as ever (although there were periods within that time-frame where they had been much improved).

I felt that I'd given the drugs enough of a chance and went to my uro pretty much begging for some sort of surgery.

He sent me for a cystoscopy.

This was about 2 years ago now.

The new uro who assessed the procedure told me, essentially, that there was nothing wrong with me and that I was not a candidate for any of the BPH surgical procedures..

My bladder had filled up normally and voided completely during that test.

He suggested that my regular uro should prescibe some drugs aimed at overactive bladder symptoms and that I should continue with the Cialis and the Avodart.

But at this point I began to question the diagnosis of BPH and was wondering why I should stay on the BPH drugs.

We tried Vesicare, Toviaz and Myrbetriq around that time.

I don't recall how much or not these new OAB drugs helped my symtoms but I was so p****d off about being treated essentially for incontinence that I don't think I gave any of them much of a chance.

I don't remember if I saw that 2nd uro (the one who had evaluated the cystoscopy) a second time or whether he prescribed Nocdurna to me after the test, but at some point he prescribed that drug.

IIRC The Nocdurna did help with the nightime peeing but one of its potential side effects is death due to sodium retension or something like that if you accidentally drink too many fluids while on the drug, and I did not want be doing that drug on a regular basis, so I did not start taking it regulary (although I might have to).

Around this point I sought out a 2nd opinion from a 3rd urologist who told me he agreed with my regular uro.

I still see my regular uro every 6 months and have continued on the Avodart + Cialis.

Again, sometimes these drugs seem to be helping a little but for long periods they don't seem to be helping at all.

I've been going through one of these bad periods and just saw him 2 Mondays ago.

I pretty much read him the riot act but there doesn't really seem to be anything else that he can do for me.

He told me to go back to the 2nd uro and ask him about alternative treatments like Botox injections, which I really don't feel like pursuing.

Note:

Although my uro doesn't seem to like to use actual measurements he tells me that my prostate was only slightly enlarged when I first came to him and is slightly smaller than that now since being on Avodart for about 2 years.

He also tells me that I have no trouble emptying my bladder fully whenever he does those little ultrasound tests after making me pee. 

PSA, blood work, etc. are all normal.

So, since I really don't believe at this point that my symptoms are due to BPH necessarily at all I decided to go off of the Avodart and Cialis and just see what happens.

I started on a Saw Palmetto product, as wishful thinking, just in case.

My uro tells me that after about 3 months my prostate will have grown back to pre-Avodart size and that if the drug had been helping my symptoms or not I would by that time.

The effects of the Cialis would be known almost immediately after stopping.

The first 2 days w/o the meds were noticeably better symptomatically at night but not by a whole lot.

I took this to mean that the Cialis might have actually been making them worse.

But the last few days, my symptoms, both day and night, are going like gangbusters.

I actually started with Vesicare yesterday and last night was marginally better.

To be more specific here is a description of my symptoms:

When they are at their worst, I have to pee basically, both day and night, at 1.5 hour intervals (sometimes sooner).

[And let's not forget about the accompanying leg cramps at night as decribed above.]

Volumes are usually small, i.e. I have the urge to pee even when my bladder is not nearly full.

Sometimes during the day it will be influenced by drinking too many fluids and I might have to pee even more than that.

On good days I can go for 2-3 hours during the day w/o needing to pee and around 2.5 hours at night.

Sometimes, especially at night, getting the stream started is slow and sometimes I have to massage my pelvic area to get it started at all.

I almost always have to massage the pelvic area forcefully in order to feel like my bladder has completely emptied.

As the Subject Header says, I'm at my wit's end and have no idea what to do next.

Any advice or even just hand-holding appreciated.

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