Hello everyone. Let me first apologize for how long this post will be. This is my first post here @ HW, I used to post over @ Web MD but was told about this site 6 months ago. I have been sitting back monitoring, everyone here seems to give such good advice and support. However since Davids post I have been reminded of my own personal trip to Hell and Back (hence I appreciate your name Purgatory). David if you will allow me to share my journey you are not the only one who has gone through the gates of Hell.
A little background. I have a congenital absence of the lower extremities (smooth at the hips). I attended medical school here in the midwest, I also have a Masters Degree in Hospital Administration which I have retired from. In 2007 at the age of 49 I had a PSA of 12, I had no symptoms and normal DRE. This led to a prostate biopsy with a diagnosis of Prostate Cancer with a Gleason of 3 & 3. I referred myself to a Urology group where a med school colleague practiced. He recommended an associate of his who does Robotic Prostatectomy. This Uro had done over 150 of them, of course not on some one with no legs. LOL
I felt comfortable with this young surgeon and knew he had been top trained so on Jan. 25, 2008 underwent the Robotic procedure. The procedure went as planned with a final Gleason of 4 & 3, margins free, seminal vesical free, and no lymphnode involvement. While in the hospital I had horrible pelvic floor pain and bladder spasms. I went home after a couple of days in the hospital. Stayed in bed about a week had the foley removed 5 days post surgery on Jan. 30th. I returned to work 1/2 days the second postop week. Things were progressing nicely then the gate of hell opened!
On March 8th my wife and I went to dinner and a movie with her daughter (happens to be a lab supervisor at local hospital). That morning I noticed a problem urinating and thought it was because i had drank to much coffe and was a little dehydrated. Well after dinner and about half way through the movie I really need to urinate but could not go. So off to the local hospital we go and lucky that my step daughter works there they got me in pretty quick because the ER was packed. They called the Uro who did the surgery (who by the way is in a town 100 miles away) and he told them to cath me because I must be in retention. The nurse tried and tried each time going to a smaller size cath. Nothing was going through. By then it had been 9 hours since I last urinated. They called the Uro back and he said for me to come to him. Off we go 100 mile trip step daughter driving. We get to the ER where he was on call and after not being able to go he dilated a distal urethral stricture and placed a foley cath (yes David it was pure hell). But what a relief when my bladder emptied.
I removed the cath at home as told on March 12th. The next morning at work I could not pee. I call the Uro in his office and drive myself the 100 miles. He place another cath and tells me he is scheduling me for a cysto next week. On March 17, 2008 I go to the Surgery Center under general anesthesia he cystosopes me and performs urethral dilitation. He says he found a stricture in the bladder neck from some scarring. He leaves the cath in and sends me home. On March 24th I go for follow up the cath was pulled and I was started on Flomax.
March 31st I can't void call the Uro told to come to office, drive myself the 100 miles. In the office he tries to place a catheter and can't (hurts so bad). Send me over to the hospital to put me to sleep and cystosocpe. After 10 hours I am finally taken to surgery and scoped. He notices a vesical neck contracture (stricture) that he dilates. There were also three hemolock clips in the posterior aspect of the urethra just distal to the bladderneck for the initial Robotic surgery that he decides to remove just ot make sure they are not causing the ongoing problem. Sent home with cath to remove nxt Monday, April 7th. (Hey David do you see a similarity?)
Removed the cath thought I was good until a week or 10 days later. April 27th. Can't go pee, here we go again the wife drives me the 100 mile to the ER. My Uro is not on call but one of his associates is. He does the torture of pushing the metal sound/dilator through the urethra and after numerous tries gets it in and places a catheter. I am totally unnerved!
Call my Uro he schedules me for surgery under general anesthesia on May 1st during which time he opens a stricture at the bladder neck and injects it with a steroid in hopes that it will not grow back. He also places a suprapubic cath 3-4 inches below belly button for emergency to drain if the urethra shuts off again. By the way I did not mention I have been going to work everyday when not in the hospital draging the cath and bag around not fun with no legs.
I then develop a testicular pain and orchitis (testical swollen to the size of a softball). Treated with 5 days of Levaquin and things return to size. Folloy up office visit on May 28th. Things seem to be doing OK. Oh by the way my PSA has returned to zero during all this. Hooray!
The regular cath has been out but I still have the Suprapubic cath (my safety valve). The Uro decides it need to be changed, so he pulls it out and tries to put another in and can't get one in. Oh well maybe things are going to work OK. NOT!!!
I think everyone is getting the picture by now. June 15th can't pee, off to the 100 mile ER, another one of the associates on call. Off to the OR for another cysto and transurethral incision of bladder neck contracture. This Associate Uro says this is getting rediculous. My Uro comes in the next morning and tells me they can't fix me and they were going to refer me to a specialist for a possible rconstructive procedure such as a continent catheterizable bladder cap.
So I make appointments with three different specialist around the country. Just so happens the first one I see (mid July) thinks a perminent urostomy to catheterize is not a good idea and wants to fix my willie to do what it is supposed to do. However he removes the foley I have in place and sends me home to self cath every day to keep it open until he can schedule me to come in for surgery (he has to go out of the country to present a paper). I say well OK but what if it scars over again. He gives me 2 different size caths. I think you all know the story by now. Go home, daily self cath (the wife loves doing this torture) and about a week later can't Pee even call a neghbor nurse to try and cath me, she can't. This time I drive myself 180 miles (3 hours). See his resident who takes me to surgery and puts the suprapubic catheter in until his boss gets back in the country.
On August 15, 2008 the day after my 51st B-day the Specialist Uro does a surgical cystocopy. He says if this doesn't fix the problem he will have me come back and will place a stint in the bladder neck to keep it open, but he doesn't really want to because I will be incontinent. (Hey at this time anything is better than not being able to go at all right David).
Well the good news is it has almost been a year and I continue to be able to urinate with a good stream, I am fairly continent with a little leak from time to time which I wear 1 pad a day/nite. I am able to get a 75% erection with Viagra/Cialis and I do use a pump to help things out.
My thoughts: I was a healthy 50 year old with no symptoms or ED, who was born with out legs, but who has a good career, wife, and life in general. Having been through plenty of ups a downs in life not having legs, nothing compares to the pain, depression, torture, etc... that I went through last year. My PSA's remain ZERO which is what started this mess. If I had to do over again I would not have the surgery and would take my chances that I would probably die of something besides Prostate Cancer. The Specialist Uro tells me that 5% of men who have prostate surgery may develop contractures/strictures so I guess David and I are in another unwanted club. He has also entered me in a study he is doing for a Urology textbook on how to treat these. David my prayers are with you and I hope you finally get to a point where you can put this behind you as well. I apologize for the length of this post. Kbars