In the early years of my struggle with prostatitis, the disease was mainly a nuisance. I had multiple trips to the doctor, and rounds of antibiotics, but it was mainly a source of cyclical pain, not constant pain. When my prostatitis did flare up, antibiotics were sufficient.
At age 15 I had an operation for a urethral stricture. I don't know if either the stricture or the operation contributed to my prostatitis or played some other sort of role in the progress of the disease. I do know that I had come to strongly dislike having medical problems related to my genitals.
I feel like this mental aspect of my response to prostatitis greatly contributed to my problems with the disease. For whatever reason, as I grew older, I became completely unable to tune out the pain. I can ignore other sources of pain surprisingly well, but it was like my brain had become hard wired to notice pain from my nether regions.
By age 19, I was having more regular treatments, mainly antibiotics, and I was experiencing the illness as a cycle with a quite painful peak. I was hurting maybe 50% of the time. Although that was very unpleasant, the pain itself was usually just a low throbbing kind of pain. It interfered with sleep and concentration, but it did not make me dysfunctional.
By age 25, life sucked! The pain had grown steadily worse over the years, and nothing had made it go away. It had become a constant, extremely unwelcome companion. Antibiotics sometimes seemed to have some effect, but not a great effect. I had also become, through no conscious choice of my own, fixated on the pain. Ice was the only thing that saved me. Both sitting on ice bags and inserting small pieces of ice in my rectum were very effective methods of providing momentarily pain relief. There was no way to use ice to keep the pain away at all times, after all, I had to sleep, but this at least made it so that I could get through the day.
Around this time, I started using pain medicines full time. I hate opioids. They do weird things to my brain. For whatever reason, it seemed to take a lot of opioids to produce good pain control. So, for many years, I took a lot of opioids. This means that I learned to live with the side effects. The drugs made me paranoid and gave me strange mood swings. I was fighting through quite a bit of depression as well.
I am one of those people who quickly build a tolerance to opioids. This meant that I had to take regular drug holidays to regain my sensitivity to them. Drug holidays suck in the worst way. Basically, it involves going through opioid withdrawal while enduring double the normal amount of pain. Not fun.
The worst of my opioid side effects was the regular hallucinations. I would sometimes hear creepy voices saying creepy things. I sometimes saw and felt bugs crawling on me. I had other hallucinations that were worse than these, but I don't like to talk about them.
So, by age 29, I was depressed and kinda nuts. I alternated between living with the pain or controlling the pain with opioids and living with their side effects. I am proud of the fact that I managed to maintain a successful career during this time.
At age 30, I got a pain pump implanted. This proved to be an incredible blessing. By pumping a small quantity of an opioid directly into my spine, it required a much smaller quantity of the drug to control the pain, and that meant far fewer side effects. I still had a few hallucinations, but it was just minor auditory nonsense. I was no longer in pain and no longer bug-eyed crazy. All I had to do was get my pain pump refilled every six weeks, and life was good. The next year, I met the woman who would become my beautiful wife :)
So, in the course of a few months, my life went from sucking terribly to being great. I was in a great relationship and I was doing well in my job. I got married and, shortly after, produced our middle child. (Our first child is my stepdaughter.)
Shortly after she was born, my life did another 180, this time sinking lower than ever. I had a neuroexcitatory reaction to the opioid in my pain pump. At the time, we did not know what was happening. My pain specialist assured it me that it could not be a reaction to the medicine in the pump, while my GP assured me that it was not an infection, and was probably a reaction to the pain medicine. For a month, I endured a cycle of intense all-over pain, followed by a shorter period of relief. It was roughly 30 hours of pain and 18 hours of relief. This was a type of pain that is very difficult to describe. It felt different from normal pain, but was really really intense.
Through my own research, during the periods when I was functional, I found ample evidence that my problem was caused by the opioids. The evidence that I gathered was sufficient to even convince my pain specialist that the opioids were the problem. This part of my story is actually quite long and full of miserable details. The end result was that I survived the month-long neuroexcitatory reaction, but with a little bit of neurological damage. I could no longer take opioids for more than a few days, and I am sensitive to a number of other medications as well. I now have to take Neurontin 3 times per day.
However - I no longer had prostatitis! For reasons that I do not understand, my prostatitis had gone away. The pain was being blocked by the pain pump, so I had not realized that the actual source of the pain had gone away on its own. When I went off the pump, I was astonished to realize that I felt no pain down below.
So, for six years, I was pain free without opioids. This was wonderful. No pain and no hallucinations. We had our third child during this time.
Sadly, the prostatitis came back when I was 39. I am not sure what caused it to return, but, as with before, plenty of things helped a little but nothing removed the pain. Opioids were no longer an option and I got through this period with ample use of ice, good care by urologist David Cornell, and the cumulative effect of many minor drugs for pain. Unfortunately, the constant pain was, once again, making me more and more depressed. I hate pain.
My urologist was quite willing to experiment with different treatments. One of the treatments we tried was intraprostatic injections. These actually helped a good bit, but their effect diminished over time. The injections included a cocktail of antibiotics, anti-inflammatories (including a steroid), and anesthetics. This cocktail has had long-lasting effects for some patients, but did not for me. However, one thing we observed was the immediate, almost-complete, pain relief I would get during the period of effect from the anesthetics. This provided evidence that numbing my prostate removed the pain.
There is some controversy as to whether prostatitis actually takes place in the prostate. In my case, the evidence from the injections, combined with the fact that my prostate constantly produced pus-filled nodules that blocked fluid movement through the acini, convinced us that the pain was, most likely, actually occurring in the prostate. I interpreted this to mean that I was a good candidate for a prostatectomy. If my prostate was my problem, then removing it would remove the problem.
So, I made arrangements with Dr. Krongrad to undergo a laparoscopic prostatectomy. When I arrived in Aventura for the surgery, I kept screwing everything up. Pain causes me to dissociate a bit, and by the time my surgery had arrived I was in full dingbat mode. Dr. Krongrad and staff were patient with me and guided me through everything I needed to do to get ready for the surgery.
The surgery itself was not too bad. I went to sleep, then woke up without any prostate pain. The difference was immediately noticeable. The catheter was not pleasant, but the prostate pain was gone.
My recovery was pretty rough at first. I had a bladder infection that spread to my kidneys. I also had other illnesses that were not related to the surgery, but made the recovery period difficult.
It was worth it. At six months out from the operation, I am doing well. I have no prostatitis pain at all. I am going to restate that, for emphasis. My prostate pain is zero!
I do still have a little bit of exertional incontinence. That means I sometimes leak a few drops when I do something strenuous. The incontinence was bad enough to require wearing diapers for the first two months, but taking Vesicare and meclizine brought it under control.
Now, to answer the big (or not so big) question that everyone is wondering - how is my erectile function? I still have not had a full erection while I am awake. A couple times I have woken up with erections, and sometimes I see signs of life when it grows to half mast. From what I understand, these signs of life are good indicators that my erectile function will return to full normal.
I do have orgasms, and they are actually stronger than they used to be.
For me, the surgery has very much been worth it. The constant pain was beating me down in a bad way. My life has returned to almost normal, and my family is happy to have me back. I still feel like my motivation is not where I would like it to be, but that it is slowly returning. Chronic pain does bad things to the brain, and I wish I had gotten the surgery earlier, to be honest.
My wife says she is really glad that I am back with her and my family -- that I am living in the real world now, rather than living in the place inside my head to which I had learned to retreat.