1 year post FLA update

Posted , 10 users are following.

Hey guys, I hope everybody is well, and having a MERRY CHRISTMAS? I have not done an update for a while, mostly because nothing has really changed. It seems that after 13 months post FLA I would have to say I am worse now than prior to the procedure. My flow is about the same as before, but the dribbling afterward is much worse, I also now have almost complete retro grade ejaculation, which I NEVER had before, not even while taking the medications which normally cause it. I still get up to pee at least 2 times per night,but sometimes 3 times. I know some guys say the retro ejaculation does not bother them, but to me it is a real bummer, sex just has not been anywhere nearly as enjoyable since the procedure.

The only good news I can report is that after several years of trying I seem to have gotten my prostatitis under control, if not cured. Thanks to an open minded Dr. who specializes in chronic Lyme disease treatment. I have not had any prostate pain, nor infection for several months now, so cautiously optimistic there.

I am not sure what if anything I may try next, considering having an cystoscope performed just to see if there is a blockage of some type that could be causing the retro.

Also as some of you might recall, my brother had the procedure performed a year ago this month, and he has similar results to mine, including the retro ejaculation. He was a part of the "study".

As always I am open to anyones ideas or suggestions. I certainly do not post this to trash the procedure, but to give information to others. Since I had already tried PAE with no success I knew there was a possibility this would not work either.

And just to remind everybody, I am 55 with a relatively small,hard prostate 43 gms. History of prostate infections. I did not qualify for urolift, due to large median lobe(which DR K said he did not see). Failed PAE IN 2016, failed FLA in OCT 2017.

DR K seems to be a great DR who cares a lot about his patients, but I have emailed a couple times and called once over the last several months, but got no reply.

I will update if anything changes, or I have a scope performed.

Thanks

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  • Posted

    Hi Joe;

    I have almost the same situation as you small prostate, failed pae, lifelong non-bacterial prostatitis. But no FLA, no large median lobe.

    How did you get your prostatitis under control?

    I have found that the one thing that helps me is to avoid pressure on my lower abdomen. When I'm constipated I have difficulty emptying my bladder and have many more sleep interruptions.

    Also I can get down to one interruption per night with Tamsulosina and 200mg of ibuprofen after dinner. I found that the ibuprofen calms my bladder and prostate, I can feel it as I fall asleep.

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    • Posted

      Hello jjj thanks for the reply, it seems there are several of us on here that PAE did not work for.

      As far as the prostatitis goes, I was diagnosed with chronic Lyme disease this past summer, and I was lucky that one of the few Lyme literate Docs was located very close to Nashville where I lived at the time.

      To make a long story short, a huge portion of his treatments are fighting the biofilms, which keep the antibiotics from doing their job. When he first started me in his protocol, I asked about treating the prostate infection as well, and he suggested I talk to my primary care DR and have the microgen test done again. After the test, I took six weeks of the antibiotic that was suggested by micro gen. Low and behold it seemed like finally the antibiotics actually worked. That was about six months ago, and this is by far the longest in years that I have been infection free.

      I am by really trying not to get my hopes up, but it sure seems to be working.

      JOE

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  • Posted

    Hi Joe,

    Thanks for your posting. I am sorry to hear about your results and hope things still improve yet.

    I also had a failed PAE at UNC in 2016 and after that I learned to do self-cathing (CIC) which I continue to this day. It really is no big deal once you get used to it. Have you considered CIC?

    Have you looked into the Keigel exercises to strengthen your external sphincter muscle to help with the dribbling? It may be that your internal sphincter muscle was compromised during the FLA (just guessing) so these exercises might help you.

    Also you could look into pelvic floor exercises to help.

    Did you ever get an MRI to see where some of the problems may lie?

    Did you brother have the same condition as yourself including the prostatitis and the same doctor?

    I hope your situation improves over time. Howard

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    • Posted

      Thanks for the reply Howard. my brother did have a lot of the same issues, with the exception of the prostatitis. AND His prostate was of similar size.

      I have done kiegels for several years, but have not practiced them much since the procedure, as it seemed to cause some prostate pain.

      JOE

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  • Posted

    Good afternoon Joe

    Sorry to see all the problem you are having.

    You have tried most of all the procedures and they are not working. All of these target the prostate. Maybe the prostate is not the problem.

    It could be the bladder or something else in the area.

    I had a problem last year when I was in the hospital. I had stopped peeing. Did a lot of test, My doctor did a Rigid Cystoscopy The Urolift was still in the same place so it was not my prostate. I did have a inflamed bladder but my doctor told me I should have be able to pee on my own but I did not have or feel that I needed to go.

    I have been on Vesicare 10 mg for a year. I have a tight external sphincter. It has help me. It does have some side effect. They do say that it can cause RETRO which I am not a fan of but I look it up. Out of the 23.000 men that were in the trail there was only 1 that had retro from this pill

    Please look at everything. With all they have done to your prostate maybe they need to look at something else. How much more to you have to cut out.

    Good luck......................Ken

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  • Posted

    Joe,

    Sorry to hear that your situation has not improved. You and I communicated on this site last year, after your procedure. I too had FLA with Dr K, on 12/15/17. After working through a complication, recovery started in mid Feb and slowly over the past 10 months, I have seen gradual improvements to the point that I am finally better than I was before. Since my primary motivation for FLA was to treat prostate cancer and the urinary symptoms were just a 'bonus', I am overall very happy with the results, even though I too have retro. Fortunately, I am one of those that don't mind, which likely is influenced by the primary reason for the treatment (PCa). Given a choice between PCa and retro, I will take retro every time.

    I concur with what Kenneth said - the one thing I think I have learned through the past many years of dealing with urinary problems is that there are many potential causes. While physicians start with a traditional BPH diagnosis and associated treatments, there are many of us that may have additional or other problems that are causing our symptoms. I had a cystoscopy 2 years prior to the FLA and it showed some evidence of stretching but very little occlusion of the urethra. Additionally, none of the 3 selective alpha blockers I tried helped - at all (though the NIH states that only 50% of men see improvement from those drugs).

    In my case, I currently believe (always subject to change with additional info) that my issues are from at least 4 different causes: non-bacterial prostatitis, the stretching of the bladder, some small amount of prostate tissue around the urethra (which no longer exists) and an over active external sphincter. Of the 4, I've addressed 1 directly with FLA, the stretching I cannot reverse, the prostatitis is better, but I do still get flare ups and the sphincter is the white rabbit - the thing none of the uros I've seen know how to diagnose much less treat (other than drugs for an over active bladder). Once that sucker tenses up, 'fo get about it' (as Donnie Brasco would say).

    I wish I could provide more than moral support as I know how frustrating this is. I would recommend the cystoscopy as it should give you information you cannot get from any other source. I also suggest you record the video screen with your smartphone as the equipment itself typically can only take still photos (which I suggest getting a copy of as well).

    I would be interested in how you have addressed your prostatitis - a lot of us struggle with that on an ongoing and chronic basis. Best of luck to you in the future.

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    • Posted

      Hello Buddy

      Glad to see you doing better now.

      With your retro It must have been where the cancer was located. He must had to take more tissue out. IT does happen.

      If your not concern about retro I would not worry about it.

      If you want to try to see if you are still ejaculating try Sudafed or another acetaminophen. It has worked on 25 % of men. I know your not having anymore kids but they were using this on men that were trying to be father's

      It also may not work it all depends what was cut out.

      Take it easy and hope all stays good for you............Ken

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    • Posted

      Thanks Ken - the retro likely caused by ablation of the bladder neck as well as the ejaculatory ducts as he also ablated around the urethra. I doubt Sudafed or anything else would help and quite frankly - it doesn't matter, though I do understand that this is a very personal issue and is of greater concern to others.

      The PCa was actually near the rectal wall, which probably contributed my developing the fistula. All surgery involves risk - though the side effect I was primarily concerned with was incontinence - fortunately, no problem with that. The fistula sucked, but was more of a psychological kick in the gut than anything else due to how the urologists I saw treated me (like a moron that got what I deserved). Fortunately, the results have proved them incorrect.

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    • Posted

      Thank you Tim, and really glad to hear you are doing better. Hopefully the good results will last for you. I am curious, did you have the retro immediatly after the procedure? Mine did not start until months afterward. As a matter of fact, for the first several months everything was better than before. But then for some reason things started to gradually change, and diminish.

      I attempted to make an appointment with a urologist in Chattanooga today, that specializes in urolift. But nobody answers the phone, and apparently does not return calls lol. It must be nice to have such a good business, that you do not need new customers.

      Thanks again for the reply, and keep us up to date on your progress.

      JOE

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    • Posted

      Hi Tim-B,

      Could you please elaborate on the fistula and what the urologists recommended and how you recovered from it. Do you think the fistula could have been avoided? Glad you are doing better now. Thanks.

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    • Posted

      Tim

      That is all that matters.

      You don't have to please anyone by yourself.

      You must have had a large prostate if he had to do a lot around the bladder neck

      Sorry about that. Don't call yourself a moron. Most men wait tell the last minute to go to the doctor. I was like that. Never rushed anywhere. I has sepsis for 6 weeks before I went into the hospital. Doctor told be I was about a week away from kidney failure

      Life goes on. Keep up the good news....Ken

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    • Posted

      Yes, retro from the beginning. My prostate was ❤️0 cc prior and he ablated between 50 and 60%, so I don't have much less regardless. Which is fine by me. Other than that, sexual function was unchanged.

      Finding a good uro is like finding a unicorn. I had ONE in the 7 I've now seen. Unfortunately, he left private practice and went to work for the company that makes the DaVinci machine. My appointments with him consisted of sitting in his office next to his desk as we reviewed articles and different treatments and discussed all of the options that were currently in use or in review. A truly unique doctor (his name is Jamie Wong).

      Please be cautious with Urolift. It has worked for some and others have had issues (based on posts in this and other forums). If the FLA worked for a while but then regressed, you may have other issues involved.

      Good luck.

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    • Posted

      Actually, I had a small-ish prostate ❤️0cc, pre procedure.

      I don't consider myself a moron (now 😉 ) - it was a combination of the stress and the questions they asked about FLA (which they knew nothing about). The impression was they considered it akin to seeing a back room butcher. Neither was sympathetic nor empathetic with my issue. Fortunately, it turned out not to matter.

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    • Posted

      For some reason, this forum software converted the less than symbol to a heart. The volume was less than 30. (and it does not allow edits)

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    • Posted

      Howard - a brief synopsis:

      7 days post procedure I removed the catheter but could not void - at all. I was prepared as Dr K had a small supply of catheters delivered to my home beforehand.

      I started CIC - which was easy and continued this for 3 weeks. After 1 week and no progress, I made an appt with my current Uro but soonest was 6 weeks out, so I went to see his PA (which was a waste of time).

      At 3 weeks, Dr K prescribed a medication to stimulate the bladder (increase pressure - I only took 3 pills over 6 hrs) which is when the fistula formed. Trip to the ER to have foley inserted and two days later the Uro now had to see me (after ER trip) and I had a CT scan. This uro recommended a supra-pubic catheter vs foley and told me if that did not let it heal I would need a colostomy as well. At that point, I was a pretty sad panda. Having been very healthy my entire life with not much more than a bout of flu or head cold, these two options had not been part of my retirement plan...

      1 week after first ER trip (same day as ice storm in Atlanta), the foley is blocked due to a very bad UTI (first and only I had) - so another trip to ER with friend in 4-wheel. ( only times in my life I went to the ER - and met my insurance out of pocket! <g> )

      Dr K wanted a cystoscopy performed, but current Uro would not do it, so Dr K found one that would. Cysto showed no blockage but in the words of that uro a 'cavernous prostatic urethra'.

      Dr K was very attentive and reassuring, calling me several times a week. He was confident it would heal on it's own in 3 weeks (which it did). The angst from the 'recommendations' of the two uros were far worse psychologically than the fistula itself. (There was no pain, just discomfort from the foley).

      Anal fistulas are VERY rare with this procedure and from the research I did during and since, there was only 1 person I could find that did not heal on their own by having a foley inserted for 3+ weeks. That one had a complicating factor in that he had radiation therapy for cancer prior to the FLA.

      So, while unpleasant for the short term - that's all it was, just unpleasant, hopefully the PCa has been dealt with at least for several years and for now, my urinary function is better (and improving) - no regrets.

      - and yes, I think the fistula in my case could have been avoided. If I had continued to CIC for another week or two, I think everything would have taken care of itself, but that's just supposition on my part.
      

      I am cautious when relating this info, as I do NOT want any man to rule out FLA for undue concerns over this complication.

      If you want to read a much more detailed story of a man that is a physician that dealt with this (I've spoken with him while he was dealing with this and encouraged him to write this to help others): https://www.inspire.com/m/Englishman/journal/bph-and-pca-treated-with-fla-a-physician-patients-perspective/

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    • Posted

      Hey Tim

      Glad you are doing better.

      Sorry about your other problem. You had more to heal with that you were not looking to do

      Yes what you said is true.

      Urolift is not for everyone. It will open you up enough to help your BPH problem if it is the prostate and you don't want to deal with any side effects.

      But you can said the same about any procedure. Being we are all different Not all procedure work for everyone.

      That is why you have to do your research and fine a good doctor and a procedure what every it is that is going to work for you. Doctors can tell you what they feel will work for you but they really don't know until you have the procedure.

      Again glad all worked out for you. Take your time to help. Relax.....Ken

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    • Posted

      Thanks Tim for the details. I've been doing CIC for 3 years now. My prostate is 300cc. Recently I had a "liquid biopsy" that suggested I have >94% chance of Gleason 7!! I had a mp 3T-MRI last week in Detroit and uploaded the disk to Dr.K two days ago with the help of Donnie. So now I sit by the phone waiting to hear my fate from Dr.K and praying. He is a wonerful man.

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    • Posted

      Howard,

      Some of those tests, like the one you mentioned are not that refined (from what I've read). My brother had two genomic tests this year which indicated he had an 'x'% chance of 'significant cancer', so he had an MRI - read by Dr K and Dr Busch and both said his prostate was totally clear - no indication of any problems. My brother is 7 years older than me and never had any issues.

      Personally, I've had a small prostate and low PSA tests (mid 1.x) but still had Gleason 3+4, tests are just one of the indicators of potential problems.

      Stay positive and good luck!

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    • Posted

      Thanks Tim. Clinically my DRE was good as well as my Free PSA and PSA density so I am hopeful.

      From what I read Dr. K has been taking bigger margins. Have you had any follow up scans to check on your lesions? I wish you all the best. Thanks.

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    • Posted

      Just came back from having blood drawn for my 4th quarterly PSA. Since the procedure, PSA has been 0.2 (down from 1.9 and 2.2 prior to the procedure). MRI in October was clean, so far so good.

      I believe all the FLA practitioners have increased their margins from a couple years ago and I read the laser had some type of change as well. Dr K can give you the details.

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    • Posted

      That is great news Tim - you must be very happy. Congratulations.

      The link you provided here to the "Englishman" post is very important and I recommend it for everyone with BPH. Thanks for pointing me to it. All the best. Howard

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