PAE - sucess with a few side effects

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    Im a 49 year old with BPH.  IPSS score about 18-20 before the procedure with a 50-60 ML prostate and a pretty large middle lobe.  PSA score ranging from 3.2-3.8.  Had a TRUS which was negative for cancer (1 of 14 was atypical but not considered cancerous).  Also had a cystoscope which confirmed the middle lobe issue.  Urologist recommended Rezum or TURP.  I decided to seek out a PAE instead.

?   I had a PAE done on 3/27 in Virginia.  Procedure was as most people described. Within a week I was working out but had some bleeding at the site of insertion so I took a another week off.  After that, I resumed my normal workout schedule (more on this later, as this is the problem). While I never felt some incredible difference on a day-to-day basis there has been a signifigant difference in my BPH.  I'm down to a 8-10 range on my IPSS and it feels great to not worry about going to the bathroom.  While I still have a bit of a frequency problem (I drink ALOT of water, plus coffee, etc) if I have to hold it, it's not really a problem anymore.  So, as for the PAE itself, I consider it a huge success.  The only side effects are two fold.  1) I think my orgasms are slightly less pleasurable.  I wouldn't use the term bland, but just a little something missing.  This seems to be slowly improving and not a big deal but I thought I would mention it as it's a big concern for some.  2)  Every four weeks or so, I seem to find blood in my urine after a hard run (5-6 mile tempo run).  After the first two I passed what I presume was a piece of prostate tissue and the issue went away after a few days.  This latest time I ran hard again after a four day break and I still peed blood.  I also never saw that I passed any prostate tissue but that can be hard to tell because I'n not always urinating at home into a pefectly clean toilet.  Bottom line...I'm a bit concerned with this.  Has anbody had any similiar symptoms?  The IR Doc doesn't really know what to make of it and I am sort of dreading going back to a urologist after abandoning their recomendation.  My gut tells me to take a break from running for about a week and see if the symptoms subside with 3 months (6 total after the PAE).  At that point if they are still there, I will go see a urologist.  Any other suggestions?

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  • Posted

    As I posted before on another thread, after 60 days of my PAE, I can´t walk for a long time because when I get back home I pee a lot of blood mixed with urine. Like you I don´t know why this is happening. After my PAE I´m feeling that my erections are not the same that was before. I´m ejaculating little sperm too and there´s not I can do for now because no urologist will give any input to someone who they do not treated before.

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    • Posted

      I had blood in my urine which happened more after exercising.  It was caused by urinary bladder stones.  Have you had a cystocope performed or a Urogram (CT that checks out your urinary system)  After stones were laser blasted and irrigated out, I have not had any more blood in urine.  Just a thought for you to consider
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  • Posted

    Blood in the urine is never something to take lightly. That said, there can be many causes to blood in the urine, some of them benign. Twenty or so years ago, I had four or five episodes of blood in the urine that was probably due to exercise. If it continues, I would definitely see a uro to rule out something serious. 
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  • Posted

    Sounds like I have similar stats to you. 54 ys old...psa 1.8 to 2.0 range lately..55 ml size.. Same ipss score...i'm guessing large median lobe also ..my qmax is 8... I'm probably getting the PAE done in September. Your post was encouraging. It seems to me you didnt take it easy long enough. Part of your prostate tissue is dying off and the procedure is all about blood vessels. I would consult with Dr Bagla but it will probably clear up with more time and take more time off from working out. As far as orgasms, there's less pressure on your urethra now(your peeing better) so not a surprise that the sensation is different. It's probably more like it used to be before the Bph set in, you've just forgotten. The Bph pressure changes the sensation. I know it has with me. My two cents, Good luck!

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  • Posted

    Did the IR say that this couldn't still be some of the dead tissue from the PAE? 

    I had a PAE (that didn't work for me - probably because of enlarged median lobe and the fact that I was already mostly dependent on CIC) and remember peices of something in my urine for a while.  I think i was told it was dead tissue and not to be concerned; however, I can't remember how long it continued.

    One thing that I still do have is some ejaculate coming out even when i haven't had sex for a while.  Neither my uro or the IR seemed particularly surpised or alarmed at that.

    Best of luck!.

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  • Posted

    Hi Marc,

     

       I had a PAE with Dr B on the same day as you. I have not had any blood in my urine, but my exercise routine is far gentler than yours. I'm 70. My BPH symtoms have improved in a way that sounds similar to you.

    Rich

     

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    • Posted

      Hi Rich, glad to read that you had good results. I am almost your age and my only real BPH isdue is getting up twice per night. That is not bad but some nights I have a hard time actually starting the flow---am concerned that one night I won't be able to get things going at all and end up in the ER. I sm considering PAE, FLA, or Urolift. My urologist recommended green light laser but I want no part of that.

      Can you describe your experience before and after the procedure and why you chose PAE over other options.

      Rick

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    • Posted

      Hi Rick,

      " that one night I won't be able to get things going at all and end up in the ER. "

      That one night may come sooner than you expected. My advice is to learn how to self-cath (CIC), so you can avoid that ER trip, and the potential problems that may come with someone else inserting a catheter into you. Hank

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    • Posted

      Hi Rick,

          We traded several messages a couple of months ago (I know ir's hard to keep track of all the discussions on the forum). I'll copy the reply I sent you about how I decided here, and also post the link to the discussion that tracked my progress.

      https://patient.info/forums/discuss/pae-with-dr-bagla-on-03-27-17-582060

      I did consider many of the other options, including Urollift, but it jjust sounded to me far more invasive than PAE. I have spoken with Dr K (the FLA doc in TX) 3 times. He is truly a wonderful man. FLA also sounded more invasive (though more targeted as well) than PAE. I had narrowed my choices down to PAE w/Dr B, FLA w/Dr K, or switching meds. No right or wrong choice, just went with PAE, and would possibly consider FLA in the future if the PAE didn't work.

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    • Posted

      Hi again,

          I'm 3 months post PAE now. I spoke w/Dr B yesterday, and he said that there most likely won't be further benefit beyond where things are now.  At this point, things are definitely better, but I wouldn't say dramatically better. I've been able to move from taking tamsulosin every other day to taking it every 3 or 4 days. My stream, frequency, and urgency symptoms are definitely  improved during those 3 or 4 days, but then the symptoms seem to start coming back. I had hoped to stop taking the tamsulosin altogether.

      Rich

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    • Posted

      Rich,

      How is it taking Flomax every 3-4 days, in terms of side effects? 

      Have you ever considered Cialis as an alternative? I took Flomax many years ago and hated it. As far as I can tell, the only side effect of Cialis is an increased libido! I do wonder, however, about the longterm effects of it (or of any med) and hope to taper off.  

      Don

       

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    • Posted

      Hi Don,

         I have very bad sinus congestion when I take Flomax. When I take it every 3 to 4 days, I have congestion on the first day, and then several days of blessed relief until the next pill.

         I actually just started considering daily cialis 2.5 mg after talking with Dr Bagla yesterday. And then found out how much it costs. My Medicare Part D does not cover it, so it would be well over $ 300 for 30 pills. Is your inusrance covering it for you? I'm thinking of asking my uro doc for a sample just to see if it works for me. I had a bad sinus reaction to regular stregth Levitra, but Uncklefester on the forum said that while he has similar reactions to Flomax and Viagra, he didn't have a reaction to daily Cialis.

      How well does the daily Cialis work for your urinary sysmptoms?

      Rich

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    • Posted

      Hi Rich,

      Most insurance companies don't cover Cialis. My insurance, United Health Care GEHA, is one of the few that does--but not at 100%. I pay about $225 for 90. 

      I'm not sure how well Cialis is controlling my symptoms. I'm pretty much symptom free, 2 months after the PAE, except at night when I get up 2-3 times (probably due, as I explained the other day in another post, to some cause other than BPH), But I haven't stopped taking Cialis since the procedure, so I don't know to what extent Cialis is helping. I should have a better idea over the next week or so, as I taper off, from one 5 mg pill a day to one every other day (and maybe eventually to one only as needed).  

      For years I was on Finasteride and Doxazosin, but after I started experiencing dizzines and fatigue on Doxazosin, I switched to Cialis, which did the job but without the side effects.

      Lately, though, I've been feeling a little ligghtheaded and wonder if it might be the Cialis. That's the main reason I've decided to taper off.

      Most guys seem to tolerate Cialis pretty well, so I think your idea of giving it a try is a good idea. If you find you like it and there's a COSTCO in your area, check out their prices. I'm not sure, but I think they may be a little lower. 

      By the way, have you ever talked to Dr. B about FLA? I wonder what his thoughts are.

      Take care,

      Don

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    • Posted

      Hi Arlington,

      For years, I was taking both Finasteride and Cialis (5 mg., daily), and together they pretty much controlled my BPH symptoms. I started Cialis after no longer being able to tolerate Doxazosin. The improvement that both meds gave me was huge. Prior to the meds, I had all the classic BPH symptoms. I never had total urinary retention, but I did come close several times. 

      Two months ago, I had the PAE procedure which has enabled me to quit Finasteride. Finasteride helped with BPH but came with some nasty side effects (familiar to many on this forum). I'm happy to be off it.

      I'm still taking Cialis, 5 mg. a day, and am pretty much symnptom free, at least during the day. How much is due to Cialis and how much is due to PAE, I don't know--but hope to find out over the next week or two as I taper off Cialis.

      Hope that answers your questions.

      Don

       

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    • Posted

      Hi Don,

       

          Thanks for the suggestion but the nearest COSTCO is a little over an hour away with tolls (one of the few downsides of living in the hills), so probably would be a wash $$.

       

          Have you thought about trying the 2.5 mg cialis?

          I did some sleuthing and I think there may be some chance soon or in 3 years (it was hard to tell) for a generic or even an OTC cialis.

       

          I did not talk with Dr B about FLA.

      Rich

        

       

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    • Posted

      Oh not so bad. Maybe you missed the posts where I said things are definitely better just not dramatically better.

      How are you doing? ... I had been meaning to check in with  you today or tomorrow.

      Rich

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    • Posted

      Thanks a lot, Don.  I'm glad the PAE worked for you (it didn't for me probably due to enlarged median lobe and the fact that I was dependent on catheter).  I hated Finasteride as well.

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    • Posted

      Rich,

      I have a whole bunch of 5 mgs clialis, so I'm thinking if I take one every other day, it will have the same effect, more or less, of taking 2.5 mg. a day. I think Cialis stays in your system for 36 hours. 

      I could also cut them in half but their shape makes that difficult.

      What do you think?

      Don

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    • Posted

      I actually talked to my pharmacist about that yesterday. He said that one can cut the 5 mg down the center the long way to get to equal halves. He described the pills as teardrop shaped. Does that seem workable to you? My guess is that 2.5 per day might work better than 5 every other day, but I don't have anything that could back up that guess.

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    • Posted

      Good timing! I went and ahead and did exactly that last night, before I read your post. It split into two more or less equal halves easier than I thought it would. I've been wondering if I did the right thing, so it's nice to get confirmation from an expert that I did! Thanks, Rich. 

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    • Posted

      Great! Let me know how it works. I just got off the phone w/ my uro doc, and they're going to check and see if there are any cialis samples that they can send me.

      Rich

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    • Posted

      Hi arlington,

          I've never taken Cialis, just trying to get a sample to see if I tolerate it better than tamsulosin. Your question is best sent to unklefester and/or Don.

      Rich

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    • Posted

      If you're taking it for BPH, I don't think it matters much when you take it, as long as you take it around the same time each day. I take it at night, before I go to bed.

       

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