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
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.
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
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 CystoscopyThe 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
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.
Thanks Joe for sharing. Do you have retention ? If yes, how much ?
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
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.
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
Hello Hank, I do retain some I can feel, but have no idea how much. I have not had any testing done since the procedure. thanks JOE
Thank You Kenneth, I will bring that possibility up, if I can get in to see a decent urologist lol. Joe
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
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.
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
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
What is FLA ? Thanks
Hi Joe,
Surprised to hear in this thread that two people having the FLA procedure have retro-ejaculation. From Dr. K I understood that this would not happen. I seriously considered it, but then had treatment with Dr. G and he recommended PAE / Rezum. I did well practically from early on, except a few incidents with incontinence in the first two months. I do Kegel exercises, exercise in general. After reading many comments of men on this, I think every person is so different and surgery is every time a new challenge for any urologist. There must be many variables which play a role in every case.
Good luck to you all!
Yes, retro from the beginning. My prostate was <30 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.
Actually, I had a small-ish prostate <30cc, 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.
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)