At my wit's end

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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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  • Posted

    Charles, a friend of mine recently said that he had gone to a new, younger urologist about his problem of getting up a lot during the night.  (He had had BPH surgery a good number of years ago.)  The urologist, after listening to him and doing some tests said, that he didn't think it was nocturia because of BPH, but rather said he thought Charles had a sleep disorder.  He expressed disbelief, saying that he'd seen a number of urologists, and none had mentioned that as an issue.

    The urologist said that older urologist weren't taught that in medical school.  He said that for my friend, his bladder wasn't waking him up; rather, he was waking because of his sleep issues, and then he would become aware of a slight bladder pressure and get up and go to the bathroom.    With the help of his GP, he started some light sleep medications, and after 7 years, he says his sleep is great and he doesn't get up but once most nights.

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  • Posted

    I have symptoms similar to yours (nocturia and daytime peeing). I drink a lot of fluids until mid PM then taper off. I have a "mildly enlarged prostate"  with normal retention for a guy my age. Flomax didn't help. After seeing a urologist, he said my symptoms were caused by bladder, prostate, and sleep issues. He further stated that drugs or surgery probably wouldn't help much. He recommended sleep medication. I think a lot of men are prescribed surgery or bad drugs because their urologist or doctor is not competent. Avoid surgery except as a last resort. 

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  • Posted

    I know your pain, I have had an enlarged prostate since 23 now 61

    And it started to really give me problems in my 30's went through eveyntest but then did not know much and no drugs soak in a hot bath jack off

    More I was told, 40's started the vitimans, had some lock ups due to cold meds scared me

    To death all nite not being able to pee, 50's started drugs but only took on occasion, should have sought a specialist then late 50 had shoulder surgery that tore my colon that led to huge prostate issues, I had the Turp it has been for me a hell 40 days but I can pee not all guys go through what I have as my prostate was huge he said so more removed longer recover, go to a top rated Turp Surgery specialist don't try the others stuff it is only temporarily solving get to a Dr now! Don't drink coffee or alcohol it makes things worse

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  • Posted

    Geez people.

    Let's not turn this into a political discussion about US health care.

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    • Posted

      OK, back on topic.

      You said you tried Flomax - what dosage? I've found that .4 dosage, if taken just before I go to sleep, will not have sexual side effects, or at least minimal. When you took it the first time did you give it a few days to kick in? It takes 5-7 days I believe.

      Last couple of days I've been drinking black tea with a little piece of fresh ginger - tastes great and last night slept 6 hours straight - could be a coincidence. I've also found salty food like curry or any takeout food makes me produce more urine. It's not just not drinking lots of fluids.

      What other medications are you taking? You mention night time pills ?

      I am wary about Avodart, which I believe in one study showed increased chance of aggressive prostate cancer - meaning those who developed p cancer got the agressive form, not that it CAUSES p cancer. I think another study later came out to say it's OK. It doesn't make much sense either since if you don't have an enlarged prostate why take a pill to stop it getting bigger?

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    • Posted

      I don't recall the Flomax dosage, sorry.

      I'm sure it was whatever is normally first prescribed for a BPH diagnosis.

      My current uro claims that all of the alpha-blockers work more or less the same day or within a couple of days.

      When I first tried flomax, about 10 years ago I gave it a good whilen though, maybe a month, before I quit, iirc.

      And I've tried it again several times over the years, usually for very short periods of time.

      It always seems to make my symptoms actually get worse.

      I've also tried most of the other alpha-blockers at some point always with the same results.

      Alfuzosin was the best for no side effects but it still makes my symptoms worse.

      If I was on the regular med cocktail for BPH, i.e. an alpha-blocker plus Avodart, then taking the alpha blocker late at night wouldn't help with the sexual side effects because the Avodart has the same side effects and has a more continuous action through the days as far as I know.

      At any rate, I always took those meds right before bed time anyway, iirc.

      But thanks for the tip.

      If I ever go back on just an alpha-blocker, I'll try that.

      But at the moment, as I've said, I'm not on any of the BPH drugs although I have started taking a saw palmetto supplement again which I know is just wishfull thinking.

      But my current feeling is that my symptoms are not primarilly being caused by BPH, if at all, which is why I've started my little experiment of going off of the BPH meds to see what will happen.

      My symptoms over the last 2 months have been as bad as they ever were so I don't think that stopping the Avodart and Cialis is likely to make things significantly worse.

      Or at least that's the idea behind this little experiment.

      I think I also mentioned in my OP that I started on Vesicare, an OAB med, two days ago.

      Todaycwill be my 3rd dose.

      And I have to say that my symptoms have all but disappeared now.

      I had to do some work on my roof yesterday afternoon and I went for something like 4 hours w/o having to pee.

      I woke up a couple of times last night but I didn't really have the typical urge to pee, and when I tried there wasn't much in there at all.

      I think I just woke up from habit and I'm expecting the next few nights to get even better in that regard.

      I have been getting the dry mouth and drowsiness side effects but they don't seem too bad.

      If this OAB med continues to help as significantly as it has I plan to switch to Myrbetriq, which has a better rep for side effects, and see how it works for me.

      So unless my prostate grows as big or bigger than it was before I started on the Avodart about 2 years ago, and begins to make my symptoms worse again, I think I can say that my symptoms are not really from BPH but are from OAB instead.

      But time will tell, I suppose.

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  • Posted

    All. Im not a doctor but I had the same problem at one  stage and a doctor realised that I was drinking far too much water, he said that with too much water your kidneys are washed out litteraly of all the salts and it will explain why you have the cramps. He forced me to reduce all my fluid intake to nothing more than 2 litres a day. According to him too much water is very bad for your kidneys.

     

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    • Posted

      How much water one needs has to be an individual issue.  Someone who is active and sweats a lot, in their job or other activity, will need more.
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  • Posted

    You sound like you may be a great candidate for interstim therapy.

    It is essentially a pacemaker for your bladder. Your urologist can do a simple test in the office to determine if you will have success with this.

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    • Posted

      Hi JerseyUrologyGr,

       

          >>It is essentially a pacemaker for your bladder. Your urologist can do a simple test in the office to determine if you will have success with this

           What is the name of the test?

      Thanks!

       

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  • Posted

    All data indicated that you do not have much of a prostate problem. You are lucky you have good uros to tell you that. Many uros would just give you prostate surgeries to pay for their kids school (or their yacth). It must be the bladder, whether Over or Under Active Bladder. Or sleep disorder. Or too much liquid intake. Use process of elimination, we might find the real problem. Good luck. Hank
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    • Posted

      Lol

      Totally the opposite of that, except for the sugery.

      They've been treating me as if I  have BPH  for over 10 years now.

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    • Posted

      At least they thought that your prostate size was "just slightly enlarged", and did not recommneded surgeries. Otherwise you'd be worse of now. They gave you meds because they were not sure what was wrong, hoping the meds will do the job. But they did not do the job so you can say that your problem is not BPH, or at least, not the main one. You'll have to figure out yourself now since you get all the wise suggestions smile from this forum. It is how I would do it. You'll be OK. Hank

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    • Posted

      You did the right thing by seeking info from this forum. Since doctors are too busy to any one individual, I usu do my research, find my problems, and suggested them to my doctor. Usu the doctor would agree and support my finding by giving scrips and or referrals. Hank
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    • Posted

      Sorry.

      I should backtrack on that a bit.

      Based on what's been going on lately it seems clear that I suffer from both BPH, to some degree, and OAB.

      I guess the urologists are dong their best.

      I just wish their best was doing better for me.

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