Don't know what to think anymore

Men's health
1

Hi

This is my 1st post in this forum.

I'm a 61 year old male.

I was diagnosed with BPH approx 7 years ago by my GP but I had been suffering from frequent urination symptoms for several years before that.

At first the GP prescribed Flomax but it didn't help and also caused the well known sexual side effects.

I think he prescribed Avodart back then too but I never gave it much of a chance.

[For some reason I had convinced myself that Avodart, like Flomax and the other alpha-blockers, was supposed to yield rapid symptomatic relief.

When it didn't do that and also gave me sexual side effects I stopped taking it after a few days.]

I then went about Googling every supplement known to man and tried to manage my symptoms using various potions with Saw Palmetto as the basic ingredient.

Sometimes this seemed to be helping just enough but eventually my symptoms worsened.

About 4 years ago my GP referred me to a urologist.

My symptoms included, by this point, having to wake up every hour or 1.5 hours to pee and I often had a sense of urgency to pee several times during the day.

Very often it was difficult to get urination started.

More often than not there wasn't very much urine that came out.

The uro did some tests and confirmed the diagnosis of BPH but told me that my prostate was not very much enlarged.

[Later on he told me that when I first came to see him my prostate measured 41cc (I believe).]

He prescribed Rapaflo, which had the same effect as the Flomax had earlier.

He also prescribed Avodart but I had the same experience again and never gave it a chance.

At some point I found another supplement that seemed to be helping and that lasted for about 3 months and then it stopped working.

After that, at my urging based on the TV ads I'd been seeing, I had him prescribe me the daily dose 5mg version of Cialis.

This seemed to help enormously right away but again it only lasted about 3 months and then stopped working.

Then he put me on alfuzosin and it too seemed very effective right away but stopped working after about 3 months.

Then I tried the Cialis again, along with some supplements, but it didn't seem to be helping.

I then started reading about how Avodart and drugs like it are the only substances, drug or supplement, that actually can shrink the size of the prostate and that it can take up to 6 months for it to bring symptomatic relief.

So we decided I should go back on Avodart and to give it a few months this time.

I continued to take the Cialis to mitigate the sexual side effects of the Avodart this time though.

At this point the uro told me that my prostate had not enlarged much more from the initial size of 41cc that he measure approx 3.5 years earlier, but he didn't actually measure it again.

The 6 months was up about 2 months ago and I went back to my uro completely frustrated, pretty much begging him for some sort of operation so I could get a decent night's sleep again.

He then referred me to a surgeon who was going to do a cystoscopy on me asap which turned out to be last Tuesday.

My understanding was that the cystoscopy would tell him what type(s) of surgery I would be a candidate for.

Since all of these BPH treatments had previously failed with me I was prepared for some sort of new non-BPH diagnosis.

What I wasn't prepared for was for him to tell me that he can see *nothing wrong* with my urinary tract or my bladder.

Supposedly a cystoscopy doesn't actually involve examining the prostate itself, which was news to me.

Whatever fluid they injected into me came back out of me the same way that it would with a healthy male.

Whatever the camera they stuck up in there showed them was perfectly normal as well.

But he stopped short of giving any new type of diagnosis and just sent me back to my uro who I won't be seeing until mid-July.

On the one hand I'm glad that he didn't find anything seriously wrong with me because I had prepared myself for something more serious than BPH.

But now I don't know what the hell to think about my symptoms anymore or how to go about seeking some sort of relief.

And if it's not BPH then wtf kind of doctors have I been seeing for the last 7 years?

I don't know if I should stop taking the Avodart or not.

If my symptoms are not being caused by an enlarged prostate, then the most probable cause is some sort of irritation from sort sort of food I'm eating, or that's the assumption I'm currently working under until I get to see my uro again.

After a little Googling I realized that many of the foods on my current diet are known to be bladder irritants.

But I've been fairly successful on this diet and I hate to just give up on it.

For years I've known that coffee (incl decaf) and caffeinated foods like many teas and chocolate were bad irritants for the bladder and I've been limiting my intake of these anyway.

But now I'm cutting them out entirely.

I've also known that black pepper is a big irritant but it's been the main spice I use on my otherwise bland vegetable dishes.

But I'm cutting it out now too.

Then I read that strawberries, which I've been eating a lot of lately are an irritant, so no more strawberries.

Ditto for raw onions.

Etc., etc., etc.

It's only been 4 or 5 days since I cut out all these foods and there's been no symptomatic relief yet.

Supposedly this might take around 10 days.

I'm totally confused and I really need to get a good night's sleep.

Any input from anybody reading this is welcomed.

2

Hi Anon;  Welcome to the forum.  I truly think its going to be very hard for anyone on this forum to make a good solid recommendation for you.  It doesn't seem to be known if you have a "bladder issue" or a "prostate issue".  And since the "cysto" didn't really seem to "confirm a true problem"  I just don't know what to tell you.  I can tell you this much, I have a prostate that is 75 mg. which is way bigger than yours at 41 grams.  I had a "PAE" back in Sept. and it just simply didn't work.  I have now scheduled a "Urolift" for myself which Iam getting in mid July.  But thats "me" not "you".  It looks like you've tried most of the usual medicines.  Have you tried any of the "bladder meds" such as Toviaz.  I know there are quite a few out there.  You can get free samples of these from your Urologist.  I think before you try a "procedure" you should get some samples and see if they do you any good.  I also have battled the Prostate Problems for about 15 years now.  I usually get up 4 times a night-sometimes even 5!!!!!!!   I will tell you this.  If this "Urolift" doesn't work then Iam going to schedule a "Turis".  The Turis is the absolute "Last stop on the bus route"!!!!!!   It lasers out (roto-router) the prostate.  You can go to "YOUTUBE" and type in "Urolift" and watch what it is all about.  No cutting involved.  Thats my next step.  Good Luck to You. 

3

Thanks for your input ChuckP.

Yeah, it's all pretty confusing at this point and like my subject header says I don't know what to think.

I hadn't heard about/thought about any bladder meds, like Toviaz.

I'll look into that.

Thanks again.

4

I forgot to mention that my uro did give me a script for Vesicare at one point which didn't help my symptoms and may have made them worse.

I've tried going on Vesicare twice now with the same outcome both times.

5

Hello my friend.  I am sorry for your problem and what your going thru.  Maybe you answered it yourself.  With no stricture or prostate inlargement.   Which I am a happy for you. Maybe the food you are eating and enjoying are cuasing your problem.  Have you looked back over the years and seen when all of this started and what you were eating alot of.  I see you cut out a lot of the suff you were eating  I think it will take longer then 10 days to get your sytem clean out.  Also I would get off any of the pills that the doctors gave you. I was giving alot of the pills that you were on Alfuzosin 10MG was the last one.  The side effects were the pits.  Im not saying that they will cause other problems but  I had a cystoscopy done in october to see why they could not catheter me in the hospital ( Horror Story ) When my urologist did the first on he found a stricture and say my prostate was only a littel larger then normal.  Well in november I was forcing myself to go.  It cause me alot of bladder infection.  Had to have another one done  this time the stricture was fine by my prostate was the size of a lemon.  I had a urolift done and all is good.  Please get off the meds for your own good.  I would ask for Cialis 20mg try that again with the change in food...I will keep looking to see if I can find anything of value to help you  Take care and good luck   Ken....Im 59    

6

Hah.

It looks like Toviaz and Vesicare are both used to treat the same symptoms of overactive bladder.

Since I've already tried Vesicare I hold out little hope that Toviaz or sim will help me.

7

Thanks kenneth1955

I see my uro again in mid July.

I plan on staying on the Avodart and Cialis 5mg Daily until then at least.

Generally speaking, my symptoms probably are marginally better nowadays then they were a couple of months ago.

E.g. During the day my urges to pee are noticeably less.

And at night, occasionally, I'll be able to go for 2 or 3 hours w/o waking up to pee but that's pretty rare.

So it might just be that the Avodart is taking a lot longer to work for me than it does with most people.

But I'm just guessing/hoping.

I do take several supplements though and I might try eliminating some of them.

Thanks again.

8

Hi again Anon;  It can't hurt to try Toviaz for 2 weeks (get a free sample from your Uro) but I will tell you that it is in the "same class" of drugs as Vesicare. 

9

Hi there

My husband's problem began with acute urinary retention while on holiday.  He had a confirmed enlargement of the prostate (80cc I think) and after 4 months of being catheterised and 3 unsuccessful TWOCs, eventually a TWOC worked and we went into the watchful waiting stage.  

After 12 months he is having HoLEP surgery at the end of the month because he not only has an enlarged prostate but his bladder has high pressure.  It was explained to him that because he was finding it difficult to urinate the bladder, which is a muscle, has thickened causing its own issues.  I mention this because you say you are not sure what the problem is now, and wheter it is prostate or bladder.  The Urodynamics tests my husband had confirmed the bladder issues.  He is having the operation now because BPH with high pressure in the bladder is dangerous because if he goes into retention again the pressure 'could' cause his kidneys to become damaged, which would be disastrous.

I hope you get some answers soon, I know how stressful it can be if you don't have a diagnosis.

10

Thanks

11

Hello.  I am glad that you are looking after your hospital.  You don't say how old your husband is.  Have you both looked at all the side effect of this procedure. Because it will effect both of you.  It's his discision and he will have to live with the out come.  Just stand by him whatever happens.  Get luck  Ken   

12

He has just turned 60.  We are both very active and have been planning a 2 year cycling trip to some far flung places (we did this 2008/2010 so we know what's involved) and we know that we both put a lot of stress on our bodies (heat, altitude, long distances) while we do this.  The choices were TURP, HoLEP or do nothing.  Doing nothing could result in permant kidney damage should he go into retention again.  The choice between TURP and HoLEP seemed obvious, HoLEP being less invasive, however, we know there may be side effects and we're both willing to live with that.  

The man who is doing the op  is very well qualified and experienced, we just hope he doesn't go out on a bender the night before the op smile

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13

Did he not also do a TRUSS when you went for the cystoscopy?

"Ultrasound, or ultrasonography, involves using a special device (transducer) that reflects high-frequency sound waves off internal structures to create detailed images called sonograms. Transrectal ultrasound (TRUS), also called prostate ultrasound, provides images of the prostate and surrounding tissue and allows the physician to examine the gland for abnormalities (e.g., enlarged prostate [BPH], prostate cancer).

14

Well, I've had similar symptoms and have managed for the last 10 years with doxidosin 4mg and Swedish flower pollen caps, 3x daily.

The flower pollen caps are MORE EFFECTIVE than flomax with NO SIDE EFFECTS.

The diet? sure, alcohol and caffeine in moderation and plenty of exercise.

Stay away from wine, beer is OK, in moderation.

You will find the better shape you are in the more manageable your BPH will be.

15

Where does one get "Swedish flower pollen caps"??? 

16

I just looked up doxidosin and its in the same class of drugs as flomax and tamsulosin.  I suspect its very similar.  I used flomax/tamsulosin for years with no success whatsoever. 

17

Hi Anon, as ChuckP said its pretty hard for anyone here to recommend anything until you get an accurate diagnosis. All we can do is tell you of our experiences. 

I can relate to pretty much all of your post as that is what I experienced...slow flow, getting up lots at night. etc. 

The difference was that I definitely had BPH. I tried lots of natural supplements with limited success but symptoms just got worse. Flomax too of course.

In the end I discovered PAE and I had mine just on 4 weeks ago and it was spectacularly successful. 

I now have strong flow and get up once or twice a night and that's only because I drink a couple of mugs of tea before I go to bed. 

An unexpected benefit was improved sexual performance. Another member of this forum told me privately he had the same sexual benefit. 

My only advice would be that you don't reply on just one medical opinion. You may have to shop around till you get a plausible diagnosis. 

Many years ago i had bad headaches with loud noises in my head. I went to about a half dozen specialists including ENT guys, audiologists and finally a neurologist. He nailed it straight away by pressing his fingers on my carotid artery the noise stopped. He placed me in hospital straight away and did an MRI where they found an artero venal malformation which could have killed me. They treated my by embolisation which killed the AVM. 

I only mentioned that because it shows that you have to be persistent and determined. 

You do have something wrong with you ....there has to be an explanation. Get several opinions. 

18

I believe I had some sort of an ultrasound when I first went to this urologist, around 4years ago. Don'T know if it involved a TRUS though.

19

Not sure why another blocker would work any better than the 3 others I've already tried but I'll ask my uro about the doxidosin anyway thanks.

i've tried all the supplements at one time or another including a few potions wit.h different types of pollen.

E.g. Swiss rye pollen, etc.

20

Thanks. Not sure where I'd get PAE around here, Toronto, though.