BPH Advice needed. Sorry, long read.

Posted , 16 users are following.

Not sure if my circumstances are unique but I've been reading through posts for a while and thought I would see if anyone has had similar issues and could offer me any advice.

11/2017 Age 47. After several hours of dealing with pain in my kidney for what I assumed was a kidney stone, I went to the ER. I had been drinking copious amounts of water to flush the suspected stone. The ER confirmed a stone and also said I has lots of fluid in my bladder (1400cc) and wanted to insert a foley. I declined. I figured with all the water I was drinking it was to be expected and I was still peeing normally or so I thought. 4 days later I'm back in the ER for the same pain but this time I did not drink water. The ER takes a measurement of fluid in my bladder and it's at 1000cc. I knew I had a problem then. I allow the foley cath and damn was that painful! I had bloody puss discharge for 3 days after insertion. It was a very traumatic experience.

10 days later and still wearing the foley, I see a urologist who has the bedside manner of a brick wall. He does a DRE & cystoscopy and says my prostate is enlarged but doesn't mention any obstruction during the cystoscopy. He can provide me no answers and shrugs his shoulders as to what might be wrong. He orders a urodynamic study. I'm trained to self cath by the nurse and have been doing it for almost a year now. My psa is a low .59 and cancer is not suspected.

After that visit, I go home and start reviewing 3 CT and ultrasound tests from the prior 3 years and I come to realize that these tests all show I've had a distended bladder since at least 04/2015. For 2.5 years my bladder has been distended but the symptoms were so subtle I did not recognize It. My primary doctor never mentioned it either which I find troubling as well. Looking back now I realize I had issues with weak stream and having to go frequently but given my age and that I was still peeing normally or so I thought most of the time, I didn't give these symptoms much thought. My urodynamic study was finally done 03/2018. The Dr. told me that she didn't think surgical options would help me and she would send the final report to my urologist. That was devastating to hear and I figured I would be self cathing the rest of my life. All during the last year of self cathing, I've had numerous UTI's as well as prostatitis and I almost was hospitalized for an e-coli uti that wasn't responding to antibiotics. Overall I've been pretty miserable. I could deal with self cathing but I seem very susceptible to UTI's and I never had one until I started self cathing.

Finally a month or so ago I see my urologist again who says my Urodynamics shows high pressure and low flow consistent with outlet obstruction and he wants to do a Urolift. My current situation is I have a bladder that was severly distended for a long period of time. I self cath 4-6 times a day. I have no sensation of having to pee unless I have anywhere from 400-600cc in my bladder. When that happens, I can pee out maybe 50-150 cc on my own but my post void residual is 300-500cc which I empty with my cath. Plus the kidney stone I had is now in my bladder and 1.6cm in size. My prostate is 39.9grams. My urologist can't seem to tell me if this Urolift procedure will work and get me off the catheter or if my bladder has irreparable damage. Does anyone have any feedback on my situation? Feel free to ask questions. Thanks!

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  • Posted

    i am ignorance about distended bladder, so i googled it. is the following correct?

    "A distended bladder can result from an infection which causes the bladder to swell and the sensation to urinate, but nothing is released. In males, an enlarged prostate can put additional pressure on the bladder, resulting in distended bladder. In other cases, medications can also lead to distended bladder."

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    • Posted

      My bladder was distended because I was not voiding my bladder fully due to bph. Slowly over time I retained more and more urine which stretched my bladder.

      What's troubling is that my primary care physician failed to even notify me that it was distended over the course of a 2.5 year period where I had a combination of 3 CT/Ultrasounds. 1st imaging the radiologist mentioned "bladder distended". 2nd imaging is was noted that it was "markedly distended". 3rd imaging said it was "grossly distended". When I asked my PCP why this was never mentioned, he said distended bladders were very common. I'm not one for suing people but damn this seems like malpractice of some type to me.

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  • Posted

    I don't have experience of your situation but a few things crossed my mind. You can empty your distended bladder with the catheter so presumably if the restriction is removed you will be able to empty your bladder without it. Is it the stone that is causing the restriction or the prostate? Is it possible to get a second opinion from another urologist? I would have thought you needed to get the stone removed and if a restriction remains in your prostate, then have a procedure which will definitly remove it such as Gyrus turp or Holep.

    Best wishes,

    Mike

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    • Posted

      The stone is not causing the blockage. My Uro says it's my enlarged prostate. The stone is possibly playing into my uti's according to my Uro. I obtained a second opinion this week and the new Uro agreed that a Urolift or Rezume could help me. This guy does Rezume, not Urolift.

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  • Posted

    Joe,

    My only suggestion is to seek other opinions. Over the past 6 years I have seen 7 different urologists. Only one of those did more than a cursory exam and seem to give a damn. Without proper diagnosis you will be on the try and fail method until they finally guess at the solution or you run out of options. Perhaps if you post the area where you live (city/state) others in that area may be able to give you suggestions on who you could consult.

    Good luck to you.

    -Tim

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  • Posted

    have have you tried Flomax? I'm surprised no one's tried you on Flomax. It didn't work for me and I didn't like it when I double the dose.

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    • Posted

      Motto! What dosage of Flomaxtra were you originally on and for how long?? When was it doubled and was that researched as my GP and Urologist refused to increase mine from 4mg a day in 2013 because of lack of research. I suspect 9 years of relaxing bladder neck sphincter mussle has done havoc post radical prostectomy.

      Thank you Barrie Heslop

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  • Posted

    Joe,

    I have a very similar symptoms, walked around with a low stream and a stretched bladder for quite some time until they found 1 liter in my bladder. prostate about 30 grams and an obstruction that need to be removed. My uros only believe trip could cure me so i have been self cathing for 8 months but without a UTI. hoping to get me bladder back while trying to figure out which surgery is right for me. I've been using speedicath fr14 and use jimjames dive method. Just got on flomax to give it a try. I'm wondering if it's the catheters you are using? I have had no problems with the speedicaths. I don't have to touch them or lube them.

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    • Posted

      I'm using the Gentlecath 12fr. It's ok . The hydrophilic coating sometimes sticks to the inside of the package which I have to carefully manipulate to unstick before breaking the water sachet. Sometimes they stick so bad that they're completely unusable. My favorite cath is the Lofric Origo. Great cath! Unfortunately my crappy health insurance won't cover it. I will look into the speedicath. What model# are you using.

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  • Posted

    And I thought I had it rough with pesky pee breaks 24/7.

    I have no clinical solutions for you, but I would pass on advice someone else on these boards offered not long ago. It's a book on prostate health by the head Uro at Johns Hopkins. His approach is to address more obvious aggravating factors of pelvic issues via watching what and when you eat and drink, losing weight if you are overweight -- and resorting to the right surgical procedure if all else fails. (Prior to this book, I had no focus on food and fluids...and I weigh 235 on a 5'11" frame. I am 72 and vibrantly physically active, but the belly-intensive yweight -- if the doc is correct -- is putting pressure on my bladder for just about certain.

    The book is "The Whole Life Prostate Book" by H. Ballentine Carter, MD I picked up a used copy in perfect condition for ten bucks on Amazon. It may be a better first step in your challenging search for relief. I wish you well.

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  • Posted

    Joe and others:

    Just be sure not to rely on a DRE for estimating the size of the prostate. Get a TRUS or MRI. DRE can be way off (in my case by over a factor of 3 times).

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    • Posted

      What is TRUS? No Uro will tell me the size nor recommend a procedure to figure it out. Just a TURP and a biopsy, neither of which I'm doing.

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    • Posted

      In the states, TRUS is generally significantly less expensive than an MRI. I couldn't get approved for an MRI, which I'm told is more accurate than TRUS. Even still, my uro tried to talk me out of a TRUS but relented when I said I really wanted it. Here are the measurements for my prostate from the various methods: DRE =40 gams, TAUS(transabdominal ultrasound) = 145 grams, TRUS (transrectal ultrasound) = 100 grams.

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    • Posted

      Thanks. I'll ask for the TRUS. My new URO scoffed when I asked how large my prostate is, what size is the median lobe and why I don't get an MRI instead of a 12-need biopsy. This makes me think I may need to keep looking for another URO.

      She thought I'd been reading too much. These doctors HATE that men get actually informed about this stuff and know how full of BS they are.

      I have a PSA of 4.0. Stable for 2 years but she wants a biopsy. Those things aren't even accurate either way. They give false positives requiring a re-test and if its negative that just means they didn't poke it.

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    • Posted

      I've had the TRUS, and two MRIs of my prostate. The MRIs I paid for myself, as the insurance I have is crap until you hit the large deductible . If you are paying by cash, MRI can be found for less than $1000 . I paid $675 for the first, and a little more than $1000 for the second at a different location.

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    • Posted

      My original uro wanted me to get a biopy when my PSA went up to 8. I told him I thought it was prostatitis. He doesn't prescribe antibiotics to "lower PSA" as he put it, but I said I wanted them and he relented. After the course, the PSA was back down to around 3. I also had the free PSA test and PCA-3 test done as well as a DRE for further supporting evidence. All tests did not indicate that I have prostate cancer.

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    • Posted

      It's amazing to me how little the uros keep up with changing procedures/trends. My new uro originally put me on Flomax but it worsened my tinnitus and didn't help much. I did some research online and suggested he switch me to alfuzosin. Alfuzosin is a newer drug than Flomax and seems to be widely prescribed in Europe. The alfuzosin works better, doesn't seem to worsen my tinnitus and according to a study at UCSF, seems to be far less likely to cause floppy iris syndrome which is important for cataract surgery.

      I sent the new uro the report on floppy iris syndrome and alfuzosin. He thanked me and mentioned that he was just discussing alfuzosin with his department head. They're seriously considering prescribing it as an alternative to Flomax.

      I have a suspicion that your new uro would recommend TURP for a BPH procedure. She sounds very old school. I belong to Kaiser and picked a new uro based on the profiles provided by the urologists. My new uro's profile said that he likes to work with patients for their care. I told him that's why I picked him, so now I've established an expectation for a two-way treatment for care. That's the way it is. You have to look out for yourself. Best of luck to you!

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    • Posted

      Motoman:

      How did you arrange for MRIs that you paid for yourself? Did you just call hospitals and ask for pricing? Since the MRI is specific for the prostate, did you call urology departments? Were your MRIs the 3T kind?

      Also would you mind listing the sizes measured by TRUS and the MRIs. If you don't feel comfortable doing that, maybe you could just provide a percent difference.

      Thanks!

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    • Posted

      I had help from the Dr that did my FLA, Dr K . He gave me the names of a few places and I called to work out the pricing. He said he has a place in Houston that will do it for around $500. You want a 3T MRI.

      I am not 100% on the size from the MRI, but think it was around 40 grams pre FLA procedure. And when I had the TRUS a year earlier, it was 36 grams.

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    • Posted

      Both my prostate measurements were done by regular ultrasound on my abdomen. Are those not accurate? First one I had last year measured it at 42.9 Last one a few weeks ago was 39.9

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    • Posted

      Hi Joe:

      It sounds like you had the transabdominal ultrasound. Transrectal ultrasound (TRUS) is supposed to be more accurate. However, since your prostate doesn't seem that large, you might not see much difference. Since I'm not a doctor, you need to ask your urologist.

      I'm in San Francisco. When I went to my new uro, his assistant gave me a bladder scan and came up with zero every time (he even used two different scanners). I knew this was wrong because I have my own bladder scanner and have measured PVR throughout the day. When I spoke with the new uro, I mentioned to him that the bladder scans showed zero on every reading. He was also skeptical and did the reading himself and got 68 ml. He showed me how the scanner showed green arrows pointing to the center when the reading was good, which is a concept I'm familiar with.

      My point is that many assistants these days are poorly trained. When I asked the new uro for a TRUS, I made it clear to him that I wanted him to do the TRUS (maybe that was the plan all along, but I wanted to make sure it was). I've read that the TRUS is supposed to be able to provide information on the median lobe. I also mentioned to my uro, that I was very interested in what information the TRUS would show about the size of the median lobe. He measured it, but from the image, I knew he had to be guessing on the one end of the lobe because the image was black. It looked like an educated guess but a guess nevertheless. I'll probably have another TRUS done early next year and will voice my concerns to him at that time.

      Best of luck to you.

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