Chronic Prostatis and BPH, PAE, HOLEP
Posted , 12 users are following.
I have a 76cc prostate by 3T MRI. An ultrasound shows an enlarged median lobe pressing into bladder.
I have been suffering from chronic prostatis for 25 years which is my main complaint.
I have typical bph symptoms also but never so bad as to cause full retention.
I have been on antibiotics on and off the whole time which has completely screwed up my stomach.
In the end the antibiotics only take the edge off the pain a little bit but don't really help much.
I have taken the full gamet of supplements, etc.
I just recent consulted an IR doc at Yale about PAE. Between him and the resident they spent 2 hours
with me. The most impressive Dr visit I ever had in my life. In the end he said his patients have an
average of 170cc size prostate and the procedure works best for larger prostates.
He had a patient with a prostate similar in size to mine with concomitant chronic prostatitis whose
prostatitis symptoms did not improve much with the procedure. He wasn't too sure that it would help me.
He said PAE does not shrink the prostate much and kills cells mostly in the center of the prostate around the urethra which seems to be key to allowing people with retention to pee.
I also just recently consulted with Dr. Christopher DiBlasio of Bethpage, NY. He has been doing HOLEP for
9 years. He said that he has had a handful of patients with prostatitis that he treated with
HOLEP. He claims that the prostatitis patients had a large buildup of calcifications in and around the
ejaculatory ducts that was visible as he was doing the procedure. He aggressively removed the calcifications and the surrounding tissue around the ejaculatory ducts which inevitably caused retrograde ejaculation.
He claimed that the procedure effectively cured the prostatitis in these patients.
He believes this buildup around the ejaculatory ducts is also responsible for the extreme pain post
ejaculation in prostatitis patients.
He's the first urologist that I have encountered that claims to have actually helped people with prostatitis
using some procedure.
He also claims that Greenlight and Turp will probably make the prostatitis worse based on his experience with these procedures. He no longer does Greenlight. He also felt that Rezum and Urolift will probably not help or make things worse. He has also been doing Aquablation for about a year and he seemed really positive on that for BPH because retrograde ejaculation is much less likely than with HOLEP. However, he is not sure it would be helpful for prostatitis because he feels it essential to remove the ejaculatory ducts for it help prostatitis.
For many years I would always pee blood when I had a major flareup in symptoms. Since I started a low oxalate diet about 4 years ago I have not peed blood when getting a flareup. In addition, the burning pain has improved a little bit. He found this interesting given his finding of high calcification in
prostatitis patients. For those who might not know calcifications are frequently caused by formation of
Calcium Oxalate crystals.
He told me to try Finastride and Methenamine for about 3 months to see if they help before going for HOLEP.
He said I could do Finastride every other day
to avoid the side effects. My guess is that they either won't help at all or only a little bit just like
everything else I tried. At that point I will probably have him do the HOLEP procedure.
He claims there is a minimal chance of impotence or incontinence from the procedure.
I live in CT and he is out of network for my insurance Connecticare so I would have to pay out of pocket.
I turn 65 in January when I will go on medicare (original medicare not medicare advantage).
If I do the procedure I will do it then to have it covered. I just learned that it is important to get
original medicare and not medicare advantage because original medicare is not limited to a network like
medicare advantage. In addition, medicare advantage plans do not cover procedures such as PAE while
original medicare will. Also many Drs will take original medicare but not medicare advantage.
2 likes, 48 replies
keith42667 dantec
Posted
You're right. In America the insurance giants are scared to death that they and their millions of dollars in profits are going to get bipassed by older Americans who opt in to medicare. So they've come up with medicare advantage plans which is actually private insurance that uses your medicare elligibility to get reembursed. Some of these plans may have some benefits that regular medicare doesn't have but you're still at the mercy of some insurance executive who's main interest is increase profits for share-holders.
tom86211 keith42667
Posted
Profitability of health insurance companies is 4-5.25%, lowest of all insurance sector companies. Public companies have a mandate to attempt to make a profit for their shareholders - no profit, no investors, no company, no jobs. Tech companies, like Apple, are much more profitable. Apple's gross profit margin is about 38%. I have a Medicare Advantage plan and it covers the 20% that Medicare doesn't pay. Costs me $44 per month plus copays.
keith42667 tom86211
Posted
If "profitability" ; whatever that is; is only 4 - 5.25%, then why did the Affordable Care Act in the U.S. (Obamacare) have to make a point of limiting the amount of profit (monies not spent on patient care) to 20%? Before the ACA some companies in the U.S. were making 20-35% profit.
Another point: Health care is not a widget to be made profitable for the manufacturer. There are just SOME things that shouldn't be privatized and made into a for-profit model. Medicare Advantage plans are nothing more than the industry's attempt to undermine one of the most successful and popular social programs in America.
tom86211 keith42667
Posted
Profitability is a readily available statistic and can be looked up for all public companies. It's basically the income after expenses as a percentage. I have been doing financial analysis of companies for decades. "Before the ACA some companies in the U.S. were making 20-35% profit." Which ones?
"There are just SOME things that shouldn't be privatized and made into a for-profit model." How about food? Should grocery stores be non-profit? I would think that food is at least as important as health care.
tom86211 keith42667
Posted
Keith,
Here are the latest stats for all the companies that provide health care plans in the USA:
CompanyProfit Margin
Anthem, Inc.4.20%
Cigna Corporation3.60%
Centene Corporation1.80%
CVS Health Corporation1.90%
Health Insurance Innovations, Inc.2.70%
Humana Inc.4.10%
Magellan Health, Inc.0.20%
Molina Healthcare, Inc.4.50%
UnitedHealth Group Incorporated5.50%
WellCare Health Plans, Inc.2.10%
All of these stats are public information.
Tom
stebrunner dantec
Posted
Hi, Dantec,
Thanks for mentioning the low oxalate diet! You caused me to do some research, as I have a kidney stone. It surprised me to see how many high oxalate foods I've been eating. Two urologists that I've seen since a CAT scan revealed the stone did not suggest this diet. They only recommended drinking more water. Will be making some changes to my diet.
Stebrunner
hank1953 stebrunner
Posted
What kind of stone did you have, kidney or bladder, from the scan ?
dantec stebrunner
Posted
I don't have a full blown kidney stone as detectable with imaging. However, there is a theory out there not generally recognized by the conventional medical establishment that you could form microscopic crystals of calcium oxalate in you urogenital tract that could irritate and inflame the linings of your bladder, urethra and embed in your prostate. As I said, a low oxalate diet has eliminated the blood from my urine and improved the prostatitis pain a little bit.
Most urologists recommend a low oxalate diet for kidney stones.
MichaelVM7 dantec
Posted
dantec,
A good friend of mine has been treated multiple times over 10 years for kidney stones, UTIs and stones lodged in his prostate. His high PSA was thought to be due to the above, but after an MRI his biopsy showed Gleason 8 cancer.
He's in good hands now and will have robotic prostatectomy. He's also aware of his need to be on a low oxalate diet.
My father was susceptible to kidney stones, and he passed some large ones. I was always impressed with his courage and ability to endure pain. I wish my dad was around now so I could talk to him as I face prostate issues. When my dad followed a low oxalate diet, he was no longer plagued with kidney stones.
The fact you've seen improvement in your pain level from prostatitis (which can be very painful) by following a low oxalate diet is encouraging, and I will look into which foods to avoid.
The crystals that form stones are jagged and can result in micro tears in the urinary tract, and is probably the cause of blood in your urine. Glad to read that's now gone!
Thanks,
Michael
stebrunner dantec
Posted
Hi, Hank,
The scan showed both. The urologists said the bladder stones were caused by my urine retention. The kidney stone wasn't really discussed. They said to leave the kidney stone alone until it became problematic. The bladder stones were removed about 2 and a half years ago.
Stebrunner
MichaelVM7 stebrunner
Posted
stebrunner,
Would that mean, then, that bladder stones are not the result of a high oxalate diet but only caused my urinary retention?
thanks,
Michael
stebrunner MichaelVM7
Posted
Hi, Michael,
The urologists told me the bladder stones were caused by my urine retention. Keep in mind my retention was extreme. They drained 7 liters out! The retention evidently came on slowly because I had no pain, so I had a lot of stale urine sitting in my bladder. Personally, I believe my high oxalate diet contributed to the bladder stone formation as well. The urologists I dealt with didn't discuss diet in regards to any of my stones. Their focus was on surgery.
Stebrunner
MichaelVM7 stebrunner
Posted
Stebrunner,
Wow, 7 liters! I can't imagine how much discomfort you were in. 😦
How long have you followed a low oxalate diet, and what changes have you noticed?
Yes, urologists would look to meds or surgery, and not generally be inclined to look at things more holistically, e.g., diet.
I hope you're on a path to health and don't go through that again.
Michael
stebrunner MichaelVM7
Posted
Hi, Michael,
Thanks for your good thoughts! Just started the low oxalate diet 3 days ago, so it's too early to tell what improvements I might see.
Since my great retention, I have to self cath 4 to 6 times daily. I can void some on my own. Your comment and Dantec's comment about the oxalate crystals that form made me wonder about a cathing problem I sometimes have. Every so often I experience pain when cathing. I don't have symptoms of a UTI, but when I insert the catheter, it feels like shards of glass at various points along the way to my bladder. And sometimes I experience the same pain as I withdraw the catheter. When I void naturally, I don't have this pain. It will be interesting to see if the diet changes this. I certainly don't want the kidney stone to grow!
Stebrunner
keith42667 stebrunner
Posted
Hi Stebrunner
I forget.. what kind of catheter are you using? I've been using a Speedicath hydrophilic 12FR coude tip. Tomorrow I'm going back to the straight tip speedicath as I get some of that scratchy feeling sometimes from the bent tip that is kind of sharp on the coloplast coude. Don't know if that is part of your problem with this or not.
stebrunner keith42667
Posted
Hi, Keith,
I use the same catheter that you use. I also keep on hand some FR14 coudes in case I'm having trouble getting through. My prostate was 90cc the last time measured. You may be right about a coude tip causing the scratchy feeling. Not sure a straight tip would get past my prostate. I tried a straight tip once early on, and it didn't feel very good, either.
Stebrunner
hank1953 stebrunner
Posted
My similar problems went away after I switched to softer catheters.
keith42667 stebrunner
Posted
By the same catheter I use, I'm not sure if you meant the FR12. That's the one I've been using for well over two years now. My last order from my supplier just came yesterday. They sent me FR14 straight tip rather than FR12 which I requested. (I had asked to go back to straight tip.)
I can use these 14s but they are definitely harder to insert than the 12s. I'm trying to decide whether to use these or try to get them to correct the order. Maybe the 14s will open me up a little more. They are faster draining, that's for sure. I'm just afraid that the combination of larger diameter and straight tip are going to cause me problems after awhile. So far, so good though. I'm going to let the supplier know that they sent me the wrong thing and see what they say.
TKM keith42667
Posted
Keith,
In the pre-lubed type of catheters like Speedicath I prefer FR12. The Speedicath is stiff and when you go to FR14 it is more difficult (not impossible) to pass through.
If you use the Red Rubber/Latex type with external lube, they are much more flexible and you can easily go up to FR16 with no problem. I tried a FR20 and could not get it passed the bladder neck sphincter.
Thomas
keith42667 TKM
Posted
Yes, when I try to use these FR14s it works fine for the first 5-6 inches and then I hit a wall with it. The 12s seem to go right through although I do have to lower my penis about 45 degrees to slide it in. Then its about another 3-4 inches to the bladder opening when the urine starts flowing.
dantec keith42667
Posted
I have never self cathed but I wanted to experiment with it in preparation for a possible upcoming HOLEP procedure. I will have the HOLEP done by a Dr who isn't local and I want to be prepared in the event I get blockage after the proceedure to be able to self cath rather than rush to an emergency room.
I have seen discussions about the pro's and con's of different types and sizes of catheters. I was looking for suggestions about specific brands, sizes and types. thanks.
TKM dantec
Posted
Dantec,
When you first start I would recommend the red rubber/latex type, like the GentleCath from Bard. Size FR14 would be good to start with. They are the least likely to cause abrasion. You have to use external lube with them. KY Jelly (sex lube) is a good one to use. Walmart also has their Equate lube. You can squeeze some onto a sterile gauze pad or paper towel, and twirl the tip of the cath in it. You will have to push the cath in with your fingers so make sure you clean your hands very well. You will also have to clean around the opening to the urethra with soap (antibacterial is best) and water. I clean with Provadone Iodine, sometimes called Betadine.
Watch some videos on-line about self cath.
After several days , if you are not bleeding , you can try some other catheters, like the pre-lubed (hydrophylic) type. You can also experiment with size 12 or 16.
It is a good idea to collect the urine in a measuring cup and check the amount color and smell. If you show any signs of urinary track infection, like cloudiness or bad smell, get help right away and beware that doctor's offices are closed evenings and weekends.
Good luck,
Thomas