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.

2 likes, 86 replies

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  • Posted

    It sounds as if your problem is overactive bladder. The best drug for that (effectiveness and fewest side effects) is Myrbetriq. I would try a course of that for a month, with nothing else and see where you are at that point. 

    If they have measured your prostate with a scope and concluded that it isn't obstructing you, I would drop all of the prostate related drugs. It doesn't seem that they've helped you anyway.

     

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  • Posted

    I have had success with one element of your symptoms- leg cramps. Magnesium Threonate morning and night, magnesium chelate with dinner, potassium also at night, 20 oz tonic water one hour before bed.

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    • Posted

      20 ounces of tonic water before bed may not be ideal for someone who already gets up every hour or two to pee...
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    • Posted

      Thanks.

      But oldbuzzard has a point about the tonic water.

      And years ago, I tried tonic water.

      Didn't help.

      Supposedly, small amounts of quinine are felt to be helpful with leg cramps, e.g. Hyland's leg cramp products.

      And I'm not wild about taking quinine on a regular basis.

      Potassium and magnesium do seem to help a bit sometimes.

      But therer's a danger of too much potassium accumulating in the blood stream with some of the OAB drugs.

      So I'm using potassium with extra care now.

      There's a timed release product from Jameison that I like.

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  • Posted

    First - you are not alone. Many men experience urinary issues which are typically lumped together and called BPH though there are many potential issues/causes - and we can suffer from more than one at a time. While the symptoms may be similar the causes can be varied and there is no silver bullet (that I have found).

    For years I had been told I had BPH - as I had the common symptoms, many of which you described. At 57 I was diagnosed with prostate cancer which exposed me to additional specialists and information, which helped me learn more about many of these related problems.  Over the past 4 years I have had 5 MRIs from 3 different facilities and had the images reviewed by 5 different interventional radiologists. I have also seen 6 different urologists in 3 different states - and I received different information from most - everything from different opinions on the size of my prostate (from 28 to 50 cc) to the existance of BPH.

    After wading through this process and the information I have come to believe that:

    1) I have little to no indication of BPH based upon the last 2 MRIs, both of which were performed by a team that specializes in imaging/reading prostates.

    2) the more likely cause of my issues is prostatitis (inflammation) and that it appears to be non-bacterial (most cases are) though that is supposition on my part as getting a clinical determination of this can be challenging.

    I have tried 3 different alpha-blockers (Flomax et al) and Cialis, all for a min of 90 to 180 days, none provided any relief and most had side effects that for me, made them untenable. 

    I have also tried numerous supplements - again, all for 90+ days and while I believed some helped my symptoms at first, I later came to believe this was just as likely a placebo effect as the symptoms would come and go regardless of what I was taking.

    The one and only thing I took that I believe definitely helped was finasteride. I took this for 6 months (at which time the side effects were worse than the symptoms)- but after stopping, the benefits have continued.  Prior to taking this, I felt like I was sitting on half a golf ball and it hurt to sit on any non-padded surface. Now, I can sit on a hard wooden chair and have no issues (well, other than perhaps back pain).

    The only other thing that seems to have helped is changing my diet. I am now what is sometimes called VB6 (Vegan before 6).  My breakfast and lunch are primarily vegan. The majority of my protein per day is from plants.  Not only has this helped my overall health (my cholesterol and A1C are the lowest they have been since my early 40s), but my urinary symptoms have improved. 

    The potential causes for inflammation can vary by individual - you do not have to break out into a rash in order for your body to have an internal inflammatory response.  Finding what may work for you can be a lengthy and frustrating process.  I have spent 4 years working on this and only in the past 7 months felt a demostrable improvement. While I don't pee like a teen, it is better than it has been since my early 40s and I THINK the dietary changes are the primary cause.

    One other thing you may consider is to have a 3T multi-parametric MRI performed by someone that specializes in this field. They should be able to tell you the actual size of your prostate and if they see signs of BPH, prostatitis or something else. Having that information is what helped me more than anything else.

    If you want more info / locations for the MRI - send me a private message as posting links in this forum causes the posts to be delayed/held.

    Good luck!

     

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    • Posted

      Thanks.

      Your experiences, seem to mirror my own in many areas save for the cancer dignosis (so far), including my dietary changes,

      My last email to my reguloar uro, sent yesterday, partially was about requesting a new battery of tests.

      But I'm in Canada so we have very little say in what tests will actually be done.

      Canadian healthcare is a great thing but it does have its quirks too.

      I also suspect that I have non-bacterial prostatitis.

      Not really sure what to do about it though.

      oldbussard:

      I also plan on trying the Myrbertriq again soon.

      I have to get the uro to renew the prescription.

      In the meantime I've still got some Vesicare and Toviaz pills around the house and I'm trying the Vesicare first.

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  • Posted

    Was the second uro with the same medical facility? Go out of the same system. If your second opinion doc has access to your records, he won't go against your first docs diagnosis. Docs in same network won't contradict each other. Need a unbiased opinion

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    • Posted

      All 3 urologoists mentioned were from 3 different hospitals.

      I'm in Canada and can't really tell you if they are all somehow associated by a single network or not.

      The 3rd uro is the one I went to for a 2nd opinion and he agreed with the other 2 and had nothing else to offer.

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  • Posted

    It seems that you are running in circles but then so is your narrative..

    You have not given any quantifiable clinical measurments.

    What is the size of your prostate?

    Have you had an MRI or a TRUS to determine this?

    If not then why were you diagnosed and treated for BPH?

    You would not get a heart transplant just becaus eyou have occassinal chest pains. You get definitive tests with accurate results.

    What is your fluid intake and output?

    Have you kept a bathroom diary with measurments?

    Are you voiding 25ml every hour or 250 ml every hour?

    If you drink two quarts of beer or coffee before bedtime you will have a different result when compared to abstaining from fluids from 4 hours before bed time.

    Leg cramps are generally a sign of a chemical imbalance.

    You make no mention of the resul;ts of a complete blood culture.

    What are your numbers including potassium and magnesium levels?

     

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    • Posted

      Sorry man.

      I've given you all as much data as the medical professionals working on me have given me.

      I don't have any of those numbers for you.

      I think my main urologist said my prostate was something like 30cc either when I first started seeing him after I'd been Avodart for over 6 months.

      At my last appointment he showed me a 3d model of 4 prostate glands increasing in sizefrom normal to very enlarged.

      He said mine, at the moment, was the 1st size, only slightly larger than normal.

      He does blood tests and a PSA about once a year and doesn't contact me unless there's something to be concerned about which hasn't happened yet.

      I did ask him about my potassium level yesterday via email and he told me it's in the normal range.

      Nobody has asked me to keep any of the types of daily logs you've mentioned.

      I have no idea how much urine I'm voiding every hour.

      Usually I have the urge to pee when my bladder is not nearly full, as I said, about once every 2 hours during the day and 1.5 hours at night.

      Evidently I don't have an issue with emptying my bladder completely.

      He checks that via ultrasound at nearly every appointment and it's also how I flunked (or passed depending on how you look at it) my cystoscopy.

      I see uro #1 every 6 months now.

      The only other tests I've had, other than the routine prostate exams 

      (via finger) and blood tests and ultrasounds is the cystoscopy I begged him for.

      As for your issues with my treatment thus far, talk to my doctors please.

      I'm fed up with all of them at this point myself.

      I drink one cup of instant coffee in the morning and often have a cup of camoumile tea or dcaf in the afternoon.

      I drink red wine maybe once a month usually 1 glass, sometimes 2.

      Beer maybe twice a year, a pint here a pint there.

      I suspect that the fact that I use balsamic vinegar on luch and dinner almost every day might be a factor, but don't intend to stop at this point.

      I'm hyper conscious of fluid intake at night but I usually do have a small glass of water with my nightime pills.

      I thank you for your input, but please leave the attitude at home.

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    • Posted

      Correction:

      Either when I first started seeing him or *after* being on Avodart for over 6 months.

      Looks like 

      I have dyslexia too. :-)

      Wish this forum allowed me to edit my posts after posting them.

       

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  • Posted

    Hi, I am in Canada too. I had prostatitis and BPH. I was prescribed Flomax, and watchful waiting.

    There was nothing watchful about the waiting. It was just waiting.

    I was waiting to see a urologist, then I would have to wait for actual

    exam, then wait for TURP. I ended up in emergency, where the treatment was just waiting.

    I came to realization, that I had to get out to get help. I have researched most effective treatment methods,

    which turned out to be HoLEP. I have found a doctor in Mexico, made appointment, booked flight, and hotel.

    Got in Guadalajara, first day exams, second day surgery. Now 10 weeks later, I don’t have prostatitis or BPH

     

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    • Posted

      They mean they are waiting for you to come back when medications don't work any more or end up in the emergency room. In a way I don't blame them because surgery is a pretty scary idea which most men push against and there are risks in every surgery. They know you will eventually realize you have to get help, I'm guessing had they told on day one "you need surgery to get rid of the obstruction" you would not have agreed.

      Curious what they charge in Mexico, and recovery time, and did it cause retro-ejaculation?

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    • Posted

      HoLEP was around $8000USD. recovery time was:

      ​operation took 1.5 hour, one day in a hospital,

      ​catheter in 48 hours, blood in urine 1 week, complete healing 2 month,

      ​no sideffects, no incontinency, no problem with sexual functions,

      Ejaculation is retrograde after HoLEP. It is nothing compare to the trouble I was in before. Holep, other than the retro has best results, and fewer problems. Looking back, I am glad I did it. 

       

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    • Posted

      Happy for you - my Urologist told me that many people say the same thing, they wish they had done it earlier.

      Thanks, surprised you had to travel to Mexico you'd think someone in USA could have done it for around the same.

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    • Posted

      I am in USA and the politicians keep saying that we need a single payer system like the one in UK and Canada but then I hear stories about waiting forever to see a doctor to get treatment. Friend died in UK waiting for cancer treatments. By the time it was his turn for treatment it was too late they told him and geve him pain meds. He waited for seven months before they did much for him.
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    • Posted

      A single payer system in the US would not have the typical European/Canadian waits or restrictions. Most likely if/when it happens it will be an expansion of the existing Medicare system which has a higher statisfaction rate than private insurance.
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    • Posted

      That is sad. I'm from Australia, we have a combined single payer with supplemental private and it works well as far as I know. I've heard most Canadians are pretty happy with the system, obviously there are exceptions. Even in the USA my cousin who HAD good insurance had to sell her house to buy medications for her dying husband after they reached the limit the policy would pay.

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    • Posted

      Thanks I did not realize - that might have helped had she been able to "keep her plan" and "keep her doctor" as promised.

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    • Posted

      In Canada, if you're in urgent need of treatment you will get it. You do have to wait for hip replacement and other non threatening treatments, howefver. 

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    • Posted

      Probably UK different because they are so overrun by migrants getting free medical work that the system is collapsing, but also people smoke more, alcohol abuse and obesity a problem there. An OECD report said the NHS had one of the worst systems in the developed world in 2015. It's going bankrupt, the socialized medicine model is failing there as less incentive for Doctors to work in a bankrupt system. And it must be too stressful for doctors and nurses. I think they are talking about getting rid of NHS. I've also heard first hand (from a legal migrant) of how migrants abuse the system - brother/father/mother/sister that lives in foreign coutry comes over to visit needing say heart surgery. They pretend to be their brother for example, call and ambulance saying for example pain in the chest - voila free $100k heart surgery.

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    • Posted

      Something to consider..... I love to visit Mexico, have gone there often over the last 40 years.  Everytime I'd go my mother said 'How can you go there, you're going to get very sick'.  But I never did.  Until last time.  I got a bad case of food poisoning.  Even before I recovered I started having IBS (bowel inflammations which I never had before) and my mild BPH became severe.   The doctors say I'm wrong but I feel like the food poisoning triggered the other two inflammations because the organs are inches apart and because of the timing.  

      Also, always listen to you mother.

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    • Posted

      Again, I'm not a candidate for any BPH procedures.

      I passed (or failed) my cystoscopy and was tolld that there is nothing wrong with my urinary tract essentially.

      The uro who made that assessment was also the one who prescribed Nocdurna for me and he seems totally uninterested in me getting an accurate diagnosis.

       

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    • Posted

      From what I have seen, the healthcare in Canada varies from excellent to poor, but I don't understand the reasoning behind the huge discrepancy. (who gets good healthcare, and who falls through the cracks)

      ?One reason is where a person lives. Some jurisdictions have better ?care.

      Another one is what the illness is.

      In Canada, money doesn't influence the outcome. Social connection has more power (whom you know).

      I know of more people in our town, who got lousy care for prostate problem. The doctors are not the problem,

      most are nice enough, though they don’t have much empathy.

      I know a guy, 40km from here, and he got excellent care for his prostate problem.

      In my case, I had to wait 3 weeks to get referral to a urologist, then 6 weeks to see the urologist, and from that time there was another 2 month for TURP. I was told that I am lucky, because some people have to wait much longer to see a urologist.

      I didn’t realy want a TURP, I wanted a HoLEP. But HoLEP is not available here.

      I didn’t go for HoLEP to US, because there was also a wait, and the cost was 3 times higher than in Mexico.

      The care I received in Mexico was very good. One can also go to India and get the HoLEP there even cheaper.

      I have considered going to India, but the 12+ hour flight discouraged me. (when you can’t pee, air travel is tough)

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    • Posted

      Other countries do really well with socialized medicine - we are the only civilized country that doesn't have some form of it. I agree that the UK is in serious trouble - France, Sweeden and Malta are doing fine with it.

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    • Posted

      Hi jjjj.

      I know what you are saying. I was in Mexico before as a turist.

      Also many times to Caribbean.

      I only eat food that was cooked, or processed by heat, and drink bottled water.

      ?I don't get sick down there.

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    • Posted

      The information I was able to access was around $24,000 for HoLEP in US.

      ?The price varies, because there are several places offering it. 

      ?I can't confirm it, but I have heard that in India Holep is around $4,000.

      ?I suspect, that the biggest part of the fee is not the doctor's fee, but the cost of the hospital stay, cost of the operating room, and personel.

      ?This cost is approximatelly double or more in US, even compared with other developed countries.

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    • Posted

      I'm all for some form of it - but when you have it totally free together with absorbing too many migrants and fraud the system falls apart. Part of the reason other countries can do it are much higher taxes, so in that respect it's not really "free"

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    • Posted

      Seen posts about this in other places. Some of these countries have a 50% tax on income to pay for it. Just a fyi.
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    • Posted

      We don't have that kind of influx of migrants here, so that won't be as much of an issue. And nothing is free - but the average annual spend on health care in the US is upwards of $20k. People don't see it that way because employers pay a lot of it and dedectables/copays add up in drips.

      Take out the broker/insurance company layer and let the govt. neogitate directly on behalf of 300+ million people and the per capita cost will go down. Most people could stomach a decent sized tax increase and have it add up to way less than $20K.

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    • Posted

      Remember the good ole days when insurance was cheap and paid for everything? No deductables. No co pays.
      Report

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