Don't know what to think anymore

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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.

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  • Posted

    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. 
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    • Posted

      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.

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    • Posted

      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. 
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  • Posted

    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.

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  • Posted

    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    
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    • Posted

      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.

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  • Posted

    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.

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  • Posted

    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.

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    • Posted

      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   
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  • Posted

    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

    Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      As long as you both are aware of the side effects THere are less with HoLEP but there is all ways side effect when they cut at the prostate.  Sex will never be the same and make sure you carry some diapers for a while.  I hope you both luck with the out come  Ken  
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    • Posted

      Ken you are still trying to scare people off. I've had two laser procedures and never needed a diaper. The laser procedures are mostly home the same day if done in the morning. One Guy on a prostate NG travelled home by train, had dinner and then played snooker. A friend possibly broke all records by having sex and no retro on day three.

      The first ever PVP patient in America flew to Japan a few days after his procedure. Note laser surgery to me it is a procedure not an operation. 

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    • Posted

      No Derek not trying to scare anyone.,  That is what I read in some of the information this morning about the HoLEP procedure.  This guy had it done 3 weeks ago and has to ware a diaper because for the first 6 days  he had no control.  He also stayed in the hospital for 3 days  Also he has not been able to get a erection fully  Every one heal in there own way and at diffrent times.  I'm glad for you that you were a fast healer.  The main thing is that before you have any procedure be aware of all the side effect that could happen. Because if it does the doctor get blamed    Take care  Ken
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    • Posted

      Hi Derek, before I found out about PAE I was booked in for a Holep here in Sydney. The urologist told me that he would keep me in hospital for four or five days....standard practice for him. His nurse told me that I could expect bleeding for up to six weeks and incontinence for up to two weeks. This indeed happened to a forum buddy of mine. On top of that the urologist told me that I could expect a 3% chance of permanent incontinence and or impotence with a 100% chance of retrograde ejaculation.

      PAE has none of that but has better outcomes with no cutting. Seems a no brainer to me. 

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    • Posted

      I did not have retro with PVP. For me that started with Tamsulosin when my prostate started to grow again so I don't blame my Holmium laser procedure for completing it. 100% is an obvious exaggeration.

      I had no incontinence with either procedure and I was 71 when I had the first and 78 when I had the second. Basically no bleeding after the third day of PVP apart from a little spurt at the start and that was from the urethra that suffers a lot of trauma during the procedure. With the Holmium laser no bleeding after the catheter was taken out. I had a lot more bleeding after my two prostate biopsies.

      I don't know why but most problem stories seem to come from America. Perhaps it is because there are so many of them posting on Forums.

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    • Posted

      My PVP experience from 2005 as I wrote it to a friend at the time.

      Crystal clear on day three and no diapers:

      I came round about 4.00PM feeling a slight pain in my penis and what felt like the need to urinate, however that feeling was probably due to the catheter being in. John (the urologist)  came round to see me pleased with how the procedure had gone. He said that they started lasing at 1.53 and finished at 2.50. He said that the Median Lobe was not

      bad and that the Lateral Lobes had been my problem. He described them as looking like a floppy saggy bottom pressing against each side my bladder. He said that no bladder neck resection was needed and that Phil the head urologist)  tries to avoid that as it is the cause of retrograde ejaculation. John did the procedure and said that Phil had been there at the start when they had planned what to do and that Phil had popped in a couple of times from the next theatre to see how things were going and again before John had started on the Lateral Lobes. I had been give shots of two types of broad band penicillin during the procedure and a shot of morphine.I had every confidence in John who is a lovely guy, very enthusiastic in what he does  and very caring. Soon I was drinking a cup of tea and waiting for dinner. I had no pain during the night and did not need any painkillers. I kept on drinking and watching the catheter bag fill up with a nice Red Wine, it needed to be emptied three times before the catheter was removed the next morning at seven.

      Now for the moment of truth by peeing on my own.  I was drinking plenty (the nurse said too much) but it was not until 11.45 that I passed a red 100ml. John came in to see me and said that he would come back in the afternoon and that if I was voiding properly could go home.He suggested that I might be dehydrated but I did not think so from the volumes passed in the night. My wife had already checked out of her hotel as we had assumed that things would be OK.

      1PM 250 ml pink. 2.30 150 ml pink and a scan showed a residue of 193 ml. 2.50PM  190 ml and much lighter but the scan showed 329 ml retained. John came back in and said that as I had a long train journey home he would be happier if stayed overnight. My wife went off to find another hotel as the Best Western had no vacancies for that night.

      5.10PM  220 ml rosy but only due to the few drops of blood at the start.

      8.05PM  150 ml retained 290 ml. 11.00PM 300 ml quickly followed by another 100 ml before bed. Woke up at 2.00 AM and passed 500 ml with a decent flow and another 300 ml at 3.45 AM. 7.00AM 300 ml followed by 100 ml at 7.30. but back to my usual slow rate ending in a weak dribble. Drinking a lot but no more until 10.30 200 ml.Passed another 250 ml at 11.30 but the scan showed 416 ml retained. We went

      for a walk to get some fresh air and missed John's visit (He had said that

      he would just phone the ward to check on me) He said that I could go and that when drinking normally at home things should settle down. He also gave me a three day course of Trimethoprim.

      I was restless the first night at home and kept on going and passed 1700 ml in small amounts all crystal clear.During the morning I passed a total of 1000 ml in five visits to the toilet.  I felt 100% well and set off for a

      day at the local racecourse. Just like any normal day dodging around from the paddock to the bookies and climbing up the grandstand to get a good view.

      Roadworks and  we had to take an indirect route. Our journey took 90 minutes using busses rather than the usual 40. Normally I get off the bus and go straight to the toilet but not yesterday. Friends I spoke to could not believe that I had an operation only three days ago.

      I had two large mugs of coffee and was getting worried that I had not needed yet and tried about 4.45 and probably passed only 200ml. 

      Last night was better waking up at 2.50 and 5.30 passing a total of 800 ml. I have not been drinking so much today to see what that does and results have been on the low slow side and I have been forgetting to record the volumes"

       

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