My BPH Mistakes
Posted , 14 users are following.
We all get so much information thrown at us about BPH solutions, procedures, drugs and devices. We can only rely on each other's experiences to sort through it and decide how we want to proceed. One way is to discuss our mistakes and failures. Of course my mistakes may well be someone else's success and therein lies the value of this exercise.
We can all agree on 2 things though. As Ken reminds us daily it is up to us to do our research and decide what is best for us and not get pressured into some decision because an arrogant doctor is berating us about questioning his suggestions. The other given is emphasized by Jimjames that just because we have peeing problems does not right away mean it is due to BPH. There are many other reasons we have slow streams and they must all be carefully explored by competent doctors before we decide on our path forward. I for one am on my 9th urologist and 4th IR. I take great pleasure in firing them now given the suffering I have endured because of being afraid to question them in the past.
I have had 4 unnecessary needle biopsies over the past 20 years. I believe the first one gave me prostatitis which later developed into BPH. It was all because I had a PSA value of 0.9 in 1996 and my family doctor then was sure I had prostate cancer. Back then at 49 I didn't even know what a prostate was and never had flow problems. But I sure did after they butchered my prostate.
Then a few years later I agreed to taking Proscar/Avodart. My uro then gave me no information about the devastating side effects of these poison drugs if taken for more than a few years. They all but destroyed my libido and overall energy and now when I try to get off Avodart I get the rebound "5-alpha reducatse inhibitor syndrome". It is awful and as I developed these side effects he just told me "I was getting older".
Then I tried a PAE which really concerned me as it seals arteries. Again I was told I was the "perfect Candidate" with large arteries and a large prostate. Well it failed and left me $8000.00 poorer and with lesions that were classified as "high likelihood of cancer". Fortunately expert targeting biopsies by Dr. Karamanian showed them to just be inflammation.
Then another IR suggested I try a varicocele embolization to see if this could reduce my BPH along the lines of the Gat-Goren theory. I could not afford the trip to Israel and the hgih cost of the procedure so I opted for a local IR who told me he could do it. There were lots of red flags but he was "so reassuring". Now I am crippled with a botched procedure and live on antibiotics and pain killers due to scrotal pain and testicular epdidimytis. I likely will have to have my left testicle removed.
The only good decision I made was to follow Jimjames and others here on the forum and learn to do CIC. For the past 30 months I have been "master of my domain".
So this is just a sampling of my mistakes. Of course others have tried these procedures and drugs and have met with success.
It would be great to hear of everyone's mistakes over the years (and successes) so we can all benefit. We are all very different and respond differently but having said that we are also in the same boat together, though maybe on different decks! Take care all. Howard
1 like, 30 replies
BobbyT Howard31850
Posted
Howard,
What amazes me is that all of these procedures do work, for some of us at least.
The failing is not the procedure or the surgeon's ability to administer it but rather the inability of diagnosing a patient accurately in order to predict which procedure is best suited to which patient.
So it seems that once a urologist finds a procedure that he is good at he wishes to use it on all patients.
Sort of like tube socks - one size fit most. So long as a surgeon gets an 85% or 90% success rate he is happy and so are 85% - 90% of his patients.
And besides, the 10% - 15% of the failed procedures a still have a bill to be paid.
Now imagine if those doctors took their Mercedes to the mechanic and 10%-15% failed to fix the problem.
Do you think that they would be happy with the results and pay that bill anyway?
I have always thought of myself as an optimist but since I have some life experience I guess I have become a cynic.
Best,
Bobby T.
kenneth1955 BobbyT
Posted
Bobby
That is very true. It is not a one size fit all. A doctor can tell you that this is what you need but they really don't know if it is going to work until it's done. That is way they do say to start out with a less evasive procedure because if it fail you can move on to something else.
I know well all what the best and are looking for just that special one but with the prostate that still grows it is always going to be another one in 5 or 10 years.
God help us all.........................Ken
Howard31850 BobbyT
Posted
You are perfectly prespective! I have a pair of thermal slipper socks that says " fits most sizes" - but my feet are size 13 so they are too small and I had to give them away - just as you say. If I hear one more urologist say his procedure is "the gold standard" I will switch to silver!! Good luck.
Howard31850
Posted
I meant "perspective" of course!
Jessiesdad Howard31850
Posted
HI, thanks for the post but what is CIC?
Howard31850 Jessiesdad
Posted
CIC stands for Clean Intermittent Catheterization which is self-catherization when needed to empty the bladder. It i "clean" rather than "sterile" so there are some risks of UTIs if not careful.