Newly diagnosed,scarred to death!

Posted , 9 users are following.

Hi Guys, I have been diagnosed with probable BPH, I have the urge to urinate constantly which is depressing me. I am being treated with Oxybutenin  which is a horrible tablet to take, is there a better drug available I should ask for...also are the drugs that shrink a prostate any good? any help you guys can give will be most gratefully received....I am really quite worn down with this...thank you again

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10 Replies

  • Posted

    Hey 1234,

    It's too early to be discouraged, give it time. BPH sucks and no, the drugs don't get better, they get worse. Finesteride or Tamsolosin are real butes. Problem is, they all effect sexual function to one extent or another. Going on those drugs websites will go into more detail.

    A few months ago I had a P.A.E. procedure at hackensack Medical Center. It's a very new procedure but better than the drugs and is in/out procedure. Also, this is available online for information purposes.

    BPH is a frustrating illness with few positives in the 'cure' area. Keep the faith!

     

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  • Posted

    I am on Avodart.  It took almost a year, but it did shrink my prostate.  It used to be 101 grams, and now it's around60 grams.  I still have problems urinating. Had turp done, but not being able to void yet.

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  • Posted

    I’ve been following this blog for about 7 months and have heard a lot about cathing, drugs, and the various BPH procedures including PAE, Rezum, Urolift, TURP, Green Light Laser and HoLEP.  The following summarizes what I’ve read as best I can.

     

    Bottom line:  drugs may work for a while (for me it was about 3 years), but they are not a long term solution and can also result in damage the bladder from constantly being over extended/full.  I used tamsulosin (Flomax) and dutasteride which did help, but eventually as the prostate continued to grow, the effect was lessened.

     

    Some procedures seem to work for some but not all.  Worse yet, some have reported total incontinence after their surgical procedures.  It’s hard to tell if it was a botched job or not.

     

    The best answer imho is surgery, specifically HoLEP.  I did the research on all the procedures (except PAE….had not heard of it), and chose HoLEP.  It is the best surgical procedure because; 1) less time in the hospital and a on catheter (less than 24 hours), 2) less bleeding, 3) very small chance of needing a repeat procedure, and 4) they remove prostate tissue (instead of burning or otherwise destroying it), so they can biopsy it for cancer.  I have heard no reports of anyone having HoLEP and needing a second procedure or experiencing incontinence or needing to continue cathing.  I’ve heard way too many horror stories on this blog about TURP & GL.  My uro explained that they both burn the tissue out, and therefore leave scar tissue.  That tends to shrink over time, and hence the need for a repeat procedure. With HoLEP, they cut the tissue away, grind it up with a ‘morcellator’, push it into the bladder, and then wash it back out.

     

    Yes, you the have retro ejac, but sex drive returns, and since I don’t plan to have any more children (age 68), it’s not a problem for me.  I was retaining close to 800ml, and my prostate was 85 grams, PSA 3.8.  After it was 46 grams, PSA 0.2.  I had my surgery in January, and after two to three months had no problems at all.  I did have leakage for 3 or 4 weeks.  Some in the UK report they were told to do Kegel exercises for a few months before surgery to avoid this.

     

    I have heard some good reports on PAE which is done by interventional radiologists.  It is an outpatient procedure and far less invasive.  If I had it to do over again, I might do that first.

     Lastly, the experience & ability of the doc is critical, and often difficult to determine.  Hospital ratings for various specialties can be found in the US News & World Report evaluations.  Bios for docs may or may not be available.  For example, the Mayo Clinic was rated best in the nation, and they have the education and publications of their docs listed…… very helpful. Best of luck!

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    • Posted

      Paul, it's a pity you left out of your research probably the best proceedure.

      PAE will undoubtedly become the new "gold standard" for BPH treatment. I'll admit Holep is better than TURP but not by much. I would never consider a proceedure that even had a slight chance of impotence and or incontinence. 

      I was booked in for a Holep but a few days before I found out about PAE ...so glad I did. Cancelled he Holep and had my PAE and couldn't be happier. 

      I now pee like a horse , no side effects except for improved sexual function. :-))

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    • Posted

      I'm glad you had a successful experience with PAE..... too bad there are little or no independent statistics on these procedures.....

      Not to belabor it, but I didn't really 'leave it out of my research'.  I'd never heard of it.  Now I'm curious if my insurance would have paid for it.... many here have said they paid out of pocket......and some have said it didn't work, but you don't know if that was the doc or what. 

      On TURP vs Holep, my opinion is Holep is substantially better; no one on this blog has mentioned needing a second Holep or having side effects that weren't expected (RE).  I do think I would try PAE before Holep, but again, that's all history for me now.

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  • Posted

    Welcome to this tough problem!  I can't comment on the best drugs, as I don't know that there ARE any!  :-P  I just want to skip ahead to the question of what's next.  I, and most people on this forum will recommend you NOT consider TURP!  While a few gentlemen have had good results, they are the lucky few, with most reporting horrible, often life-debilitating side effects or after effects.  Your uro-doc will liekly push it, but No, No, No!  Not until you have considered alternatives, including Uro-lift, Holep, PAE and others.  Just a word of caution; very few urologists even discuss alternatives to TURP, even when the alternatives are far better for the patient!

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  • Posted

    I had a PAE, but the prodedure was botched, and only one side was embolized. Still, I had a positive result for about 10 months, then all of my symptoms returned.  I will likely do another PAE, but since my cost was $5000, I need to wait a while. Meanwhile, I am on alfuzosin, which replaces the rapaflo I was on prior to the procedure - it helps, but is not a panacea. I had earlier tried avodart, and I immediately got all of the side effects and refused to stay on it longer than a month. Oxybutinin helped a little, but the dry mouth all day was not worth one less night time urination. I have found some relief with supplements, but only through selective use - I take pygeum bark and nettle root; saw palmetto is useless.  Good luck!

     

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  • Posted

    I have read the replies you've gotten so far and can't say it any better than paul20443 as his advise is sound. I had my HoLEP on June 30 and could not be happier with the outcome. Just be aware that the surgeon's skill is paramount and you'll want to know just how many your choice has performed and the outcome before you proceed. Also PAE is not covered by Medicare if you are in the USA.

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