The symptoms which disappeared quickly did not return for another 6 months. Once again, antibiotics were prescribed, this time for a month. The attacks became more frequent and were continually handled with antibiotics, which reduced severity but never solved the problem. The symptoms were urinary frequency, pressure in the perineal area, perineal pain, and a general lack of energy especially when the attacks were at their peak. I was experiencing a very poor quality of life having given up most of the sports that I had enjoyed as exercise always seemed to bring on major attacks. In addition, my digestive system had become a continual problem thanks to the many prescriptions of various types of antibiotics and pain killers.
Through the first 10 years of my prostatitis, all the urologists I encountered had no answers and no compassion. In fact, I was a problem for them and one even suggested that the problem was in my mind and prescribed long term use of valium, which I refused to take. My prostate had been scoped a couple of times and everything always showed up as normal. My PSA count which was in the 4.0 to 6.0 range was the only tell tale sign that something was not right.
In the mid 1980s, I found a urologist who actually believed that I had chronic prostatitis and believed that prostatic massage was the only way to control the problem. He agreed to give me massages weekly or bi-weekly and kept me somewhat comfortable until 2001. He also diagnosed me with BPH and in 2001 he performed a bladder neck operation. Other than improving urine flow, this operation did nothing to help with the chronic prostatitis and my symptoms, especially the perineal pain, became worse.
In 2000, becoming desperate and with no local urologist with any answers, I headed to Arizona. There I tried vigorous daily massages coupled with heavy duty antibiotics: As many as three different types taken orally at the same time. The antibiotics were selected based on cultures taken which isolated the various bacteria in the prostate and their respective sensitivity. The strong antibiotic combinations really hammered my digestive system and I could never stay on the prescribed medication as long as recommended. However, the doctor showed a great deal of compassion and with two or three trips annually I was able to get by for a number of years. Still, a prostatitis attack was never far away.
In 2007, I heard about the treatment of prostatitis through direct antibiotic injections into the prostate. With new found hope, I headed to New York for a week of treatments which included an intravenous administered antibiotics cocktail. I found the treatments extremely painful and although the immediate results were positive, the symptoms returned within a month. I went back one more time and experienced the same result. In addition, the treatments caused hemorrhoid problems which resulted in an operation to solve this problem about a year later. As a side note, the total cost of these treatment trips to Arizona and New York were significant.
Two months later, with the perineal pain and discomfort worsening, my latest urologist recommended a TURP operation. The operation took place without any hiccups and I did receive some immediate relief throughout 2007 and into 2008. Once again, the symptoms returned with vengeance and I ended up back in Arizona in late 2008 and twice in early 2009. By this time, the perineal pain had not only worsened in severity but the pain had started to go down my legs.
My luck finally changed for the better in early May 2009, when my youngest son found Dr. Krongrad’s website. I was surprised that he had started to perform laparoscopic prostatectomy on patients with chronic prostatitis and no history of cancer. Prior to my TURP operation two years earlier, I had called a well known clinic in Michigan and tried to book a prostatectomy. The secretary told me on the telephone: “Give us a call when you get prostate cancer.”
I called Dr Krongrad’s office and after a brief overview was told that Dr. Krongrad would call me personally. To my surprise, he called me within a couple of hours (I live in Canada, where doctors do not call patients). It was quickly determined that I was a candidate for surgery. I was given and immediately contacted a number of references, one being David Radford. These references gave me all the comfort I needed.
Despite the risks, which were clearly pointed out by Dr. Krongrad, I booked an operation. From this point forward, everything was handled with professionalism by Dr. Krongrad and his team including Hope and Ruth. Dr. Krongrad is all about focus and attention to detail.
My wife and I spent one week in Florida before returning by air to Toronto. The operation was uneventful (no lost blood worth noting). Like everyone else, I had gas pains for a couple of days after the operation, which was annoying. Three days after the operation I met Dr Krongrad in his office and he gave me the pathology report which revealed that I also had prostate cancer; getting rid of the cancer was an added bonus.
The trepidation about flying back to Canada with a catheter and bag was worse than the actual flight. The perineal pain did not disappear immediately, so at the time I was worried as to whether the operation had been successful. Two weeks after the operation, I had the catheter removed (a nothing event) by my doctor, who commented on the precision of the operation and stitches as shown in the photo report given to me prior to leaving Florida.
There is no question that Dr. Krongrad is a terrific surgeon and a pioneer in his field. However, given the references, this was what I expected. But what impressed me the most – and was unexpected – was the compassion and support shown by everyone: Hope, Ruth, Dr. Krongrad, the assisting surgeon, the nurses … Dr. Krongrad himself was always available (with the exception of when he was in surgery) to answer any questions by e-mail or telephone. There were few questions that Hope and Ruth could not answer as well. The biggest issue with the recovery, at least for me, was concern or fear over what I was going through. Each time a concern arose, it was eliminated almost immediately. Not everyone’s recovery is the same, but this team had SO much experience that there were no concerns that could not be addressed.
I took life very easy for the first 90 days after the operation by working out of my home. The perineal pain slowly but surely dissipated.
The biggest issue I had to deal with was the stress incontinence, which I experienced after the catheter was removed. However, very slowly but surely this bladder issue has improved. Now 8 months after the operation, I wear a small pad. There are days when I do not need the pad, but when I get very tired or exercise aggressively I can experience some leakage. I am sure that having the bladder traumatized with 3 operations within the past year has slowed things down. I am hopeful this issue also disappears over time but this is in no way slowing me down. The erectile dysfunction has been improving slowly in line with what I had expected.
I have been working out aggressively for the past 90 days with no ill effects. Due to the discomfort and pain caused by the prostatitis I had not been on a bike of any kind in 25 years! Now, I am doing all of my cardio work on a stationary bike without any pain or discomfort whatsoever. In retrospect, I now realize that my quality of life had become so poor that I did not know how bad I really was.
The following are some of the changes I have experienced as the result of the operation:
I was also fortunate that I have a wife and children who believed in and put up with me through the many years I lived with chronic prostatitis. In particular, my wife has supported me through it all and I am not sure how I could have made it through the past year and the operation without her. I also want to thank Dr. Krongrad for believing that chronic prostatitis is a debilitating disease and having the conviction to do something about it. His laparoscopic prostatectomy surgery has given me a new life.
------------- Addendum at 18 months After Surgery -------------
It is now just past the 18 month anniversary of my operation and I thought it might be useful to bring my story up to date.
First of all, things are going extremely well. Without exaggeration, I think it would be safe to say that I was able to do more in my life this past year than I was able to do in the past 10 years prior to the operation. There is no pain or lack of energy slowing me down and I am really enjoying life. Healthy people do not know how lucky they are until their health disappears. Now that my health is back, I understand how fortunate I am.
What I also want to get across is that the post-surgical healing process seemed to happen in stages: There was an immediate gain, as I described in my 8-month report above, and there has been a longer and slower second stage, which is what I am describing now.
At the end of 8 months, I could still generate some perineal discomfort through a very difficult workout. At the end of 8 months, I still had a degree of stress incontinence and erectile dysfunction.
Now at the end of 18 months, regardless of how hard I now work out, I can no longer produce any perineal discomfort. In fact, this week I just finished some long distance snowmobiling at aggressive speeds with my sons and their friends all of whom are less than half my age. I have a number of sore muscles, as they do, but absolutely no perineal pain or soreness. From my viewpoint that is a miracle!
As far as the stress incontinence and the erectile dysfunction are concerned, I continue to see improvements and may never get to 100% normal (I am not sure what the exact definition of normal in either case is for men in their 60s who have had 3 prostate operations, as I have). Either way, I am now close enough that neither of these issues concern me or affect my quality of life in any way. Believe me if I had any bladder leaking issues, the snowmobiling noted above would have produced them.
From time to time, I use drugs to improve the erectile issues, which is not a big deal, and the orgasms are as strong as ever. By the way, my latest PSA score was 0.05 ng/ml, which is basically negligible.
I am obviously well aware of how difficult it is to take a leap of faith and have a prostate removed as an answer to chronic prostatitis. When all other treatments have failed, and keeping in mind that at that point the odds of having cancer appear to be high, I am convinced surgery is the only real solution.