Here is my extensive experience with BPH. My symptoms started when I was 29
years old with painful ejaculation that hampered my sex life. I complained to
primary care doctors to no avail. My wife left me and took my only child
because of it. At age 33, I developed more symptoms with post voiding
dribbling that sometimes showed all the way through. Again, primary care
doctors were told and completely missed it. I had DRE’s every year since I
was 25 with no primary care doctor (at least 6 different ones) ever
mentioning the BPH. I went to the Mayo Clinic and they diagnosed it as severe
allergies and told me to move away from the city and away from population
(making future relationships even less likely). I continued to get worse and
developed severe debilitating acne (that had plagued me and scarred me since
I was 19). Again, American dermatologists completely misdiagnosed it. My
health continued to decline until I nearly died from bowel incontinence,
severe dehydration, and severe nearly whole-body cramping. I was hospitalized
for 17 days with nobody able to find the problem. They checked for MS, brain
tumors, parasitic infections, etc. and always came back negative. They
finally decided I was not really sick (even though I nearly died) and sent me
off with the kiss of death Munchhousen’s (“all in his head”) diagnosis (don’t
know how to spell that). I went through painful weekly therapy to try to
restore some nerve function in my legs (I was in a wheel chair for six months)
. I still had cramping episodes, severe skin problems, and inability to keep
my electrolytes in balance. I refused to accept their stupid diagnosis and
kept going to doctors (most of whom threw me out). Finally I was referred to
an endocrinologist who was trained in Italy. She read over the entire case
and said something to the effect of: I likely have hypogonadism, which may be
the root cause of most of this. I have severe Rosacea which should have been
spotted by any competent dermatologist. My prostate is probably enlarged (she
did a DRE and confirmed it). And said I likely also have osteoporosis (also
later confirmed). She put me on medication to help control the damn Rosacea
that had scarred me so terribly. She put me on Flomax to help control the BPH,
and she fought the damn state and US government to start me on male hormone
replacement therapy (testosterone) which in the US is incorrectly called
getting steroids. She also put me on Actonel to help stop the progression of
the osteoporosis. The healing began almost immediately. Unfortunately, our
damn insurance system suddenly dropped her and tried to charge me full price
for having seen her. I fought them for a year while luckily still being able
to take the prescriptions she had written. I eventually got an “exception”
for having used her but was prohibited from using her again. So I turned to
what many ranked as one of the top Urologists in Phoenix. He did a DRE on me
and said “Who is this silly novice doctor who says you have BPH. You don’t
have it.” I insisted he check again, so he did the flow rate test and an
outer ultrasound. The ultrasound confirmed the BPH and put it at exactly the
size the Italian doctor said it was (boy our US specialists are good, aren’t
they). I changed insurance companies and went back to the great Italian
doctor. She described the process of getting certified in Italy to do DREs
where they actually learn to do them correctly (instead of stupidly like our
damn US doctors do). But I still had lingering infections that only went away
when I took Flagyl (an antibiotic normally associated with parasites - that
they had not found). I asked if maybe it was a parasite they didn’t detect.
She instead immediately thought it might be the prostate again. (The
Urologist had said there was no way infections could be coming from the
prostate.) She ordered a TRUS (Trans Rectal Ultrasound). I went to a
different Urologist to get it. He had me empty my bladder and immediately
spotted a small “median lobe ball-valve intrusion into the bladder” and
recommended immediate surgery. He said I had well over 100 ml of PVR (post-
voiding residual). I then did my own surmising. I concluded that the PVR and
the ball-valve may have caused many of my serious problems (other than the
Rosacea). I surmised that the ball valve was rubbing against the bladder and
causing abdominal infections and was putting pressure on the kidneys that may
have caused the hospitalization. I further surmised that the PVR led me to
drink extra fluids and contributed to the electrolyte problems. I asked him
what surgery I should get and he recommended the microwave TUMT. I said OK,
but took the information back to the Italian doctor. She said no to the TUMT
and wanted a regular TURP to make sure the ball valve was addressed. When I
confronted the Urologist who wanted to do the TUMT, he him-hawed around when
I reminded him of the ball-valve and he almost changed his mind, but refused
to acknowledge that he had probably chosen the wrong surgery. After months of
research, I concluded that I needed regular TURP to get the ball vale or
maybe the more tricky Holmium laser surgery (having a smaller focal point
than the greenlight PVP meant it could be more precise and might be able to
get the ball valve without damaging the bladder). I had to research this
myself since US doctors only wanted to do the surgery most cost beneficial to
them. Unfortunately, the only Urologist certified in that Holmium technique
was the first one I had gone to whose DRE exam was so wrong. So I went back
to him. He tried to get the other Urologist’s video of the TRUS but they got
into a fight over it, so he decided to do a Urerthal Csytoscopy on me to help
justify the surgery. Unfortunately, that procedure required filling the
bladder with water which pushes out the ball valve and does not show it as
well. So his report did not mention the ball valve. I had to remind him of it.
He then recommended TUNA (which I had dismissed since it said it did not work
on median lobe growths – exactly why this Urologist said he wouldn’t do a
TUMT). He explained that the TUNA only vaporizes glandular tissue and not
muscular and so would be safe to remove the ball-valve if the growth was
glandular and not muscular. I decided to try that. Then the damn insurance
company got involved. They would not provide a recovery center for me and
said therefore I could not get the outpatient surgery. So my Urologist
switched to the inpatient regular TURP. I went to get that surgery on 01-15-
2007 (at age 49, 20 years after the first BPH symptoms appeared, 20 years
sooner than the average age of 69 for that surgery). The doctor at the last
second switched the surgery to the PVP (forgetting that we had discussed not
doing that due to the ball valve). By then, I was unwilling to
psychologically prepare for a different surgery date and I consented. I asked
for a general and woke up with a ½-inch catheter in place and constant
bladder irrigation being done. I could not believe that such a huge garden
hose could be stuck inside me. At 5 pm (10 hours after the surgery), I said I
had throbbing pain that felt like I had been kicked in the crotch, they gave
me a single Vicodin for that, and it worked. At 10 pm (15 hours after the
surgery) the nurse decided to mentally torture me by saying they would stop
the irrigation at midnight and come in at 6 am to remove the catheter. I
asked if that would hurt and she said “of course”. Try to sleep with that on
you mind! At 6 am they removed the catheter (and yes, it did hurt a bit).
Meanwhile my semi-private roommate was being released after only 24 hours and
having had his abdomen cut to do some surgery on him. I thought it was ironic
that I was still hospitalized while he could go home. They then told me to
try to urinate. The first time it really hurt like crazy. I was gasping from
the pain. They gave me a drug that is a pain killer that is supposed to help
with that (while turning the urine orange). The next urination I was standing
in a cold sweat in anticipation of the pain, but the drug did help it a bit
and it was less painful. Then the nurses forgot about me and neglected to
give me the drug and the next three urinations hurt like crazy (like peeing
shards of glass). When they put me back on the drug, it hurt less again. I
was released that night and about every other urination after that hurt and
now it is down to about one in ten hurting (and occasional abdominal
throbbing pain that then subsides). I went for the follow-up intending to ask
about the ball valve, but it was clear that the doctor wasn’t concerned about
that. He said the surgery looked good and that the melted tissue would
gradually slough out of the body and he set an appointment for one year later
and said “avoid sexual activity for four more weeks”. I didn’t tell him that
I had already had a major case of blue balls that led to unstoppable
nighttime “ejaculation” (though it was retrograde and nothing came out). How
can I stop that from occurring? It hurt like hell when it happened. I guess I
will ask my Italian doctor to see if the ball valve was taken care of via the
PVP operation because I still do not know. He also gave himself an “out” by
declaring that I was stupid to continue the hormone replacement as that might
cause the BPH to recur. I told him about the German, Japanese, and Italian
studies that said that improper balance of testosterone, free testosterone,
and estrogen seemed to be a cause of BPH and that restoring the correct
balance of testosterone could prevent it. He dismissed it of course (I now
only give credence to studies done in other countries). I’m already urinating
better and my leg pains are less. I surmise that I am no longer putting
pressure on my kidneys with PVR and therefore have stopped the swelling in my
legs (edemas) caused by kidney problems. The urologists do not believe my
kidneys have been affected by this but the evidence points otherwise. As soon
as I can, I will be leaving the United States so I can start getting decent
male health care.