PAE - sucess with a few side effects
Posted , 13 users are following.
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?
0 likes, 58 replies
marc34397
Posted
There has to be a reason for the bleeding and I don't think it's due to being too aggressive with my workouts. My theory is the middle lobe is dying off and as it does, pieces slough off. Where they seperate, there is bleeding . That seemed to hold true the first two times as I went to workout hard a week later and I was fine. This last time was more concerning because I gave it a few days and still had the problem. When I called the doc's office after the first time they were not super helpful. They said there was no need to go to the emergency room but clearly they didn't think it was "normal" either.
?Bottom line...I think PAE works quite well. It is not successful in all cases and I suspect the middle lobe is hit or miss. Despite my success, I'm not sure I would recommend it for a person with a middle lobe issue. The problem is the ability to target the area of concern. I also suspect just like the urologists do, success rates are probably overstated and side effects are minimized. That's simply the way things work. I can live with peeing blood every once in awhile for the relief I have seen in my BPH symptoms, I just want to be told that the blood is a result of something. If not, I will feel compelled to go down the road of finding out what it is and I know I will not enjoy that. (cystoscope, etc.) I would have a hard time believing that I have some other problem (i.e. bladder cancer, etc) as the bleeding started a month after the PAE and I never once had bleeding the other 49 years of my life.
tgt111 marc34397
Posted
I just reread your post. Considering that you had the procedure 2 1/2 months ago and im guessing things should've been healed by now, maybe it''s a reaction to the beads that they use to seal the blood vessel. Maybe not...Do you have any pain or swelling? I'm just guessing but i would check into it... I do think even with 21/2 months under your belt the Dr will still tell you to give it time...take care
alan1951 marc34397
Posted
A point of confusion on my part, and I'll just put it out there. We've heard the commercials about Cialis. Why does it seem to work so well? Presumably because it INCREASES blood flow to the prostate; especially the stromal tissue of the prostate. If this is true, then how can a medically-induced ischemia - which essentially is what a PAE is - help? After all, ischemia is the deprivation of oxygenated blood flow anywhere in the body - more commonly known as hypoperfusion. If it happens in the heart, the heart muscle dies. If it happens in the brain, part of the brain dies. How, then, can this procedure help anyone with severe prostate issues, since the procedure itself causes tissue necrosis? And a necrotic cell death causes exponentially more problems than an apoptotic - or natural - cell death. Sure, PAE facilitates urination. I get that. A true restoration of libido and an active sex life? I'm skeptical. Don't get me wrong. I have the utmost respect for IR and urologists. That said, it's one thing to come up with a novel procedure. It's an entirely different matter to have that procedure improve the quality of life. And if anyone can clarify - please do. Thanks.
hank1953 alan1951
Posted
Hi alan,
" In ED, Cialis works by increasing the levels of a chemical called cyclic guanosine monophosphate, or cGMP. This chemical increases blood flow to the penis. The chemical also relaxes muscle cells in the bladder and prostate. This may be why it eases the urinary symptoms of BPH. "
Cialis Increases blood flow to the penis, not the prostate. Hank
marc34397
Posted
I did talk to the IR Doc yesterday. He said, while bleeding is not considered a "normal" result, it has happened to others and not to worry about it. I asked if he recommended stopping running and he said there was no reason to stop as the prostate will heal itself regardless of the running. I'm pretty happy right now!
tgt111 marc34397
Posted
Thats Great. I've spoken to Bagla a few times. I have a slow stream..kind of a trickle, my uro said like an 80 yr old, and im retaining urine but most nights i can sleep through without getting up. I'd say 65% of the time. Prostate is 55grams... its probably the mecian lobe pressing down. Its not going to get any better. My issue is how miserable do i want to be before i do something. I'd like to get ahead of it if i could. I think I'll go for it in the Fall.. I've asked a lot of questions. I'm pretty confident at this point.
arlington tgt111
Posted
Word of caution - the PAE is much less effective if you have an enlarged median lobe. I was told that going in and, unfortunately, it didn't work for me. Mine was on 9/2015 and my prostate was also 55grams w/ an enlarged median lobe.
Best of luck!
tgt111 arlington
Posted
Too bad it didn't work for you.. No relief at all?... I've checked into the median lobe situation and supposedly its just a rumor that it doesnt work. PAE does work for enlarged median lobes. I've spoken to Dr Bagla about it. He said it's not true and wondered how that idea got started. Also Dr Pisco has said the same thing.
jjjj57989 tgt111
Posted
Dr. Bagla told me the same thing. Actually he said: we've had some success with them.
I'm not one of the successes.
tgt111 jjjj57989
Posted
Interesting. I'm going to check into it and see if i can find large median lobe success stories... It may be tough, people who've had problems tend to post more on these boards.. thanks
arlington tgt111
Posted
Interesting...I had multiple appointments w/ the 2 docs who had done the most PAEs in the US (Bagla & Isaacson). They are also friends and colleagues. I think they are both good doctors. They both told me that the % success w/ an enlarged median lobe was less. So, while Dr. Bagla may say that it is a rumour that it doesn't work at all when there is an enlarged median lobe, it is not a rumour that the % chance of success is less. By the way, I found Bagla to be very optimistic and Isaacson to be more measured. Even their predictions of the different % chance of success with and without an enlarged median lobe were about 20% points apart.
I may have had a 5% improvement overnight for the first 9 months but then it became even worse than before the procedure. Keep in mind that I've been CICing both before and after - so that's another variable to throw in to the mix. My ratio of catheter voiding to natural voiding was about 1 to 1 before the procedure and stayed the same for about 9 months after - but now it has devolved to the point where I haven't voided natuarally (at all) in months.
We are all different, so, hopefully, despite my experience, if you decide to go forward w/ it, it will work for you. I'm pulling for you!
hank1953 arlington
Posted
Hi arlington,
" I haven't voided natuarally (at all) in months. "
Are you taking any meds at all ? Also, what were your symptoms before PAE ? Thanks. Hank
arlington hank1953
Posted
Hi Hank,
I'm taking Rapaflo 8mg. This seems to have the best combination of effectiveness and mild side effects for me. I'm thinking of adding small dose of Cialis but it has caused some breathing/dizzy/hive-like problems in the past.
Symptoms before the PAE were basically the same as after: urgency/lack of natural voiding, etc.
hank1953 arlington
Posted
It seems thatt Rapaflo is helping you with urgency, but not lack of natural voiding. Is it correct ? Did you consider Finasteride, which I just started taking, with doxazosin which I have been taking for years ? I am hoping that within 6 mos I will be able to drop doxazosin, as indicated in one recent studies. Hank
arlington hank1953
Posted
I hated Finasteride and its side effect profile. I tried it for 8 months w/ no discernible benefit. (it did make me much more hairy! Not a benefit)
richp21 arlington
Posted
arlington richp21
Posted
marc34397 tgt111
Posted
I talked to Dr B ad Dr I before making a decision as I was concerned about the medan lobe success rates. There is no doubt that Dr I was a little more pessimistic, as he put my chance of success about 65% where Dr B said about 85-90%. With that said, Dr I stressed an impotant point....PAE is so minimally invasive, what do you have to lose? With that in mind I proceeded to have it done. It has dramatically improved my life. I can't say it will always work but it worked for this median lobe. I think FLA might have slightly higher rates of success for a median lobe (just based on my understanding of targeted versus non-targeted) but there are two drawbacks. 1) more invasive 2) less clinical data. If my PAE gets me 5 years of relief I really believe there will be many more options available.
don30615 marc34397
Posted
Hi Marc,
Happy to hear you're doing so well. Quick question: You never mentioned BPH meds--or if you did, I missed it. Were you ever on any, and are you on any now, 3 months post op?
Don
Don
arlington marc34397
Posted
Hi Marc,
Good feedback! That aligns w/ my discussions with them as well. I just wanted tgt to have all the info. My (informal) poll on this forum puts the PAE success rate (for those w/ enlarged medain lobe) at about 1 in 20. But, like you say, it is minimally invasive. It sounds like you got the result I was hoping for. That's fantastic. Here's to continued improvement!
don30615
Posted
Marc,
Hope you don't mind the question. I ask because I've been trying to slowly wean myself off my BPH meds--Finasteride and Cialis--2 months post-PAE and it doesn't seem to be working very well.
Don
marc34397 don30615
Posted
Don,
? Sorry for the delayed response. I was not on meds. Maybe I should have been but I just didn't want to. BPH symptoms are pretty much non-existent for me now. I do drink a large mocha every morning plus a liter of water so I have to pee a bit frequently after that... but I think that's pretty normal.
? As for the 1 in 20 sucess rate for median lobes, I believe that is probably misleading. I taught probability and statistics at a major university for awhile, and one thing I know is not to try data mine a site like this for statistical evidence. For the most part people only stay on this site to report great success or failure. I'm not sure where the real number is but I believe it's well north of 5%. Just my personal opinion.
arlington marc34397
Posted
Re: 5% median lobe success for PAE: the informal poll on this site, as you say, definitely could be misleading; but, if so, it could be misleading in either direction. Just good information for those considering PAE's to be aware of.