Prostatitis

How I wish I could go back in time and never have met these horrible Drs.

What are you sumptoms, Steven?  Its it just pain or what?

Pain in my prostate area tonght, Glenn and very tired. I'll write tomorrow.

 Steve

You might consider going to a major medical institution like the Mayo Clinic in Rochester, Minnesota or Jacksonville, FL, or a major university medical school. They will be up on latest research, and be most likely to be able to help.

Neal

Yes, Glenn just terrible discomfort. How do you go on with life when you think you have made an awful mistake. I am getting tired of 61/2 years like this. I have been to Mayo. No hope. The only one who is giving me hope right now is a Dr. I am seeing in Orlando.

 Steve 

Thank you for your response.  I'm so sorry that you must deal with what seems to be continual pain/discomfort.  I'm only 5 months into thinking I make the worst decision in my life when I had TURP.    In your case, is having a prostatectomy ever been discussed?   I do have some friends who have had that radical procedure, and they seem to have a decent life following that.

I think I may be headed into that direction, Glenn. Did your friends have the prostatectomy as a result of cancer or was their prostatitis involved as was my case + bad urinary problems. I'm interested in why you had turp done, my friend. Was your urinary symptoms That bad that you had to have it done or were you forced into a quick situation as I was? It happened so fast that I did not know what I was doing. The Dr. then took a flow test (which was terrible), made me fill out a urinary symptoms questionare and then scheduled surgery for the next day which was on a Dec 22 and the Christmas holidays were on the way which meant that nothing would be in operation for the next several wk. I was put in a situation where I had one night to think about it or I was going to be in pain until after the holidays. I had two things going on; BPH + Prostatitis !!!

   Steve 

My friends both had prostate cancer.

In my case, I had BPH for over a decade with fairly frequent urnination, and was up 3-5 times per night to pee.  Another doctor thought I was suffering from loss of sleep and referred me to the urologist.  (Over 10 years ago, I found I couldn't take Flomax when I ended up in the ER after falling unconscious with a BP of 65/35 after one dose of the med.)  He did the standard questionaire, then had urodynamics done, and then a cystoscopy that showed an enlarged median lobe.  He said if I didn't do something, I could end up with acute retention, failed bladder, and even kidney loss.  Scary, so I went right ahead with surgery.  For the last 5 months, less a week, I've been totally incontinent.  Only if I'm sitting and lying down does any urine stay in the bladder.  Consequently, the capacity of my bladder is half of what it was right after surgery.  I get wakened during the night, and will pee about 300 cc at most into a graduated urinal.  This happens 3-4 times at night.   Typically, I sleep about 6 hours or less, and often at 4 or 5 a.m., I give up at trying to go back to sleep as I'm just wondering, "is this the rest of my life?"    My children and grandkids are on the west coast, and I can't think of doing that trip any more.

I had BPH for over a decade too, Glenn . My Dr. didn't notice the the enlarged median lobe until he was up me doing turp. He did tell me though that my prostrate was swollen and was blocking part of my urethra. My urine flow was only 3.2 cc/sec.. I still feel though, Glenn like I made a mistake consenting for it. I just didn't know at the time what to do. Are they your same feelings and where do we go on from here? I'm very depressed about this. It's so nice having someone to talk with. I'm on an anti depressant right now trying to keep my feelings at bay.

   Your friend,

    Steve 

For myself, I am trying to find out how long is too long to wait for some sort of continence to return.  My doctor thinks I have an overactive bladder problem, and started me on a new medication, Myrbetriq, and so far, I'm not seeing any improvement.  He gave me a couple weeks sample of the drug; after that, I'm looking at over $300 per month, apparently not covered by my insurance plan.  I'm thinking that after 6-8 months total, or 1-3 months more, I'm going to see another doctor at a teaching hospital not too far away from where we live.   He does surgery to implant an artificial sphincter (AMS 800).  I've talked to one guy in FL, a friend of a friend, who had one implanted and he's very happy with it after suffering with total incontinence for nearly 3 years.  He had first had a prostatectomy, and never got control of his bladder.   The device is called an AMS 800 and it's been around for 40 years, so it's a proven technology.  In the meantime, I continue to do Kegels and a slew of other exercises each day.  Oh, they're providing me next with a device that electrically stimulates the pelvic floor muscles via a probe that's inserted in the anus.  I can't wait to start that.

In your situation,  I think you might get a second or third opinion as to where you can go from here.  It sounds as if your pain level is pretty significant, so if the short term (weeks) for surgery gives you a high probability of getting your life back, maybe it would be worth biting that bullet.  Also, I see that there is a prostatitis board at www dot prostatitis dot org.   I suspect you are aware of it already.

Glenn

Glenn,

  I have to go visit my cousin for a couple of days. I really don't want to go. Please hold that thought and I will be back on in a couple of days. Hopefully by Friday or Saturday. I would like to continue this conversation. My thoughts will be with you until then, my friend.

  Steve

This is to both Glenn and Steven, and anyone else with similar problems.

I know that this sounds drastic, but if you do decide to get a prosteotomy, you likely will end up incontinent, and impotent, and you are already half way there.

I have heard that there are implants that can provide urinary control. I know that you can get penile i?plants

This damn thing posted before I told it to.

Continuing :

...Implants that work wonderfully, because I have one. As to orgasms, I have wonderful ones, but I haven't had a prostatectomy, so I don't know how that would go, but even if you don't have them, and I know that would be a great loss, you would be able to provide a wonderful time to someone else. How all of this works out probably depends on the quality of your surgeon. If I were you, I would at least talk to Dr. J Francois Eid in NYC about both of these topics. Yes, you can reach him by phone, look him up on the internet. Also look up penile implant info on the Web for a wonderful blog.

Neal

I need to clarify my earlier 2 posts.

I'm writing about 2 different kinds of implant. One provides urinary control if you are incontinent. The other provides you with a wonderful erection if you are impotent.

Sorry for the confusion.

Neal

Neal, i was aware of both kinds.   My interest is limited to the AMS 800, which is the artifical sphincter.  Fortunately, there are three teaching hospitals within an hour of where we live, and they all can do the artificial sphincter surgery.   My total incontinence is such a heavyload for me that I've pretty much resigned myself to the idea that sex is history for me. 

Why did you have 2 Turps?

There is no reason for sex to be history for you, particularly after you get the AMS 800. Get it done, and move on with your life. I know very little about the 800, but, of course that information is available from AMS, and on the web at other forums like this one. But, I do know about penile implants, because I have one. My erection now is better than when I was 17, because it goes up when I want it to, and down when I want that. It even stays UP AFTER I ejaculate.

So move on and get your life back. Let us know how it's going, and if you have any questions about the penile implant, I'll be glad to help.

Neal

Even before the 800, you should be able to use a rubber to contain any urine which might come out during intercourse.

Neal

The Green Laser procedure  left a lot of hanging residue, even two months after the procedure, causing inflammation.  So a second procedure called Gyrus Turp was done to clear all the hanging debris.

I have inflammation even 6 years after a turp, glenn. Could a second procedure help me?

Glen,  I don't feel right down below. I don't know what to do. No one seems to want to help me.    Steve