My Failed LRP

[Chris]

 

 On January 2009, I underwent LRP surgery for chronic and intractable prostate pain. Like most long-term sufferers, I can’t remember the exact number of years the pain had lived inside me. But if somebody put a gun to my head, I would say at least 20 years.

Making the decision to have my prostate removed wasn’t easy. I thought long and hard. If I could pinpoint the one deciding factor in the decision-making process, it was this, “If the LRP leaves me impotent, at least I won’t be in any pain. Or if the LRP leaves me in some way incontinent, at least I won’t be in any pain.”

So I made a deal with myself: I’ll get rid of the prostate, in exchange for a pain free life.

Wrong. Sixteen months on, I still suffer chronic pain between my legs. What’s striking is the pain seems to originate from the site of the prostate, before radiating down each leg—sometimes as far as the knee. Also, I have been experiencing intermittent blood loss from the end of my penis, as well as poor urine flow.

Last month, my urologist—who strongly advised against prostate removal—ordered a cystoscopy. A metal clip was found lying inside my bladder, close to the urethral join. My urologist also observed that the urethral join was “too tight”. I have since undergone corrective surgery, to remove the metal clip—a leftover from the original LRP. At the same time, the urologist dilated my urethra, which has improved urine flow markedly 

Unfortunately, the pain continues unabated. I now take more pain-killers than pre-surgery.

So for the men out there considering LRP, think very carefully before deciding on surgery.

I should add, that Dr Kongrad didn’t carry out my LRP. It was done in the UK.

 

[Chris]

Another question for the good doctor.

Is it normal, 7 days after LRP, for the catheter bag to fill with blood during a bowel movement? This continued for 5 or 6 days, then the blood stopped.

Strangely, the 6 days immediately after surgery, the catheter bag was clear of any blood.

[Arnon Krongrad, MD]

Bleeding occurs on and off after surgery. The pressure of a BM or good cough can certainly intensify it. The blood may be new bleeding ot the expulsion of old blood collected at the time of surgery. The amount you describe may have been extreme, but yes, post-op bleeding happens.

[Chris]

I see.

What about blood coming out of the end of my penis 1 year after surgery? Is this normal too? Some mornings there was large splashes of blood on my underwear, some days nothing. I took pictures, and showed my urologist. He freaked out and ordered an immediate cystoscopy.

I think I know the answer. But I'm interested in your considered opinion.

As you suggested, I've been doing some reasearch on Reiter's Syndome. I don't think I fall into that category of disease. My reasons are that the conjunctivitus happened more than 30 years, was a one-off event of staying in the sun for too long, and has not returned. Also, there is no burning on urination, nor do I suffer from any inflamed or swollen joints--which according to my research, is the key marker for Reiter's Syndrome.

I'm curious. Are you saying that a man with Reiter's Syndrome may not be a good candidate for LRP? And if so, why?

[Arnon Krongrad, MD]

I am absolutely not suggesting surgery for Reiter's.

I am suggesting that: 1) Bizarre combinations of aches -- conjuctiva, bones, urethra/prostate -- can be rheumatological; 2) not every patient falls neatly into patters seen and initially described by Dr. Reiter; and 3) one cannot do the same thing over and over and expect different results, so it may be productive to reconceive the issues and consider a rheumatological consultation. In your case, given the seemingly clear explanation for the conjuctivitis that is not reactive to such infection as Chlamydia, the pattern breaks down and the argument for rheumatological illness breaks down. Or does it?

Urethral bloody discharge is a nonspecific and nondiagnostic sign. Have you had the cysto, an appropriate investigative step?

[Chris]

You suggestions are wrong, Arnon. You are trying to suggest that I suffer from a "combination of bizarre aches". What's the next suggestion you have up your sleeve? That all the pain's in my mind--right? And that if the rheumatologist can't help me, I should go and see a shrink.

Is this your crude attempt to discredit me?

Seeing you don't want to answer my question of blood seeping out of my penis, I'll answer it myself. The blood was caused by the metal clip, left behind from the original LRP. This theory is supported by the surgeon who carried out the corrective surgery.

I've had no bood loss since the second surgery.

[Arnon Krongrad, MD]

Read again. The 3 generic points are absolutely correct. Now, as applied to your circumstances, they do not lead to an overwhelming argument that your complaints are rheumatological. Nor do they rule it out. Until we examine this possibility, we will not know.

How does answering your question constitute not wanting to answer? You lost me. Having never seen you or even seen your operative records or any other record, would you really expect me to know what happened to a stranger in a faraway country at some point in the past? That would be silly. Heck, without seeing so much as the pictures you mentioned it's not even clear on my end that it was bloody urethral discharge. Your doctor "freaking out" is not diagnostically useful from my end. So from where I sit it might have been a clot passed in response to a stone that you passed from your kidney. Blood comes from many things. Many. No thoughtful doctor tells you you have X when the list of possible answers may be X, Y, and Z.

In complex cases, and yours is an example, particularly when conventional actions have yielded nothing useful, we consider varying scenarios and new explanations. Obviously it may well be that the complex of conjuctivitis, bone pain, and pelvic/prostate pains are not rheumatological; we've already reviewed this. However, not every construct in medicine is rigid. In other words, many patients have complaints that absolutely do not fit convention. Suggesting new directions and conceptions is at time the only way to make progress. How would taking a more complete history, thinking through the reported facts, and raising the new concept of rheumatological illness add up to an effort to discredit a patient?

[Chris]

Arnon, I don't think my case is complex at all. It's really quite simple. So there's no need for these imaginative theories you are putting forward as a reason for my 16 months of post-operative pain (is this a world record?).

Here's a clue. The excruciating pain started in the recovery room, where the nurse recorded that my "buttocks were clenched", and I was "screaming and shouting". I have the notes in front of me right now. Looking at them, it's like looking at my autopsy report. It's really quite disturbing, because my mind goes back to those awful minutes while I was in recovery. Now there's a misnomer.

Here's another clue. If you re-read my orignal post, I highlight one word--originate. I do that for a reason. Because that's the exact spot where the pain originates--every day, every night.. It was the same in the recovery room. The words I use in my letter to the surgeon who carried out the LRP, were, "it felt as though my prostate had been ripped out with a pair of pliars."

Sixteen months on, I stand by that rather crude decription. But that's exactly how it felt, and although I have managed to quell the pain since--with the help of numerous pain-killers--the site of the prostate is still where the pain originates.

So when you think about it, and you put all the evidence together, it's really quite simple what has happened. The operation was botched.

[Arnon Krongrad, MD]

Sorry. I didn't understand that you were referring to the surgery only. Some of the above relates to the prostatitis, not surgery.

May I please know how much, how long, and what kind of pain meds you used before surgery?

[imnotcrazy]

im a expert on addictions . no withdrawls with make your groin, ass , nut etc. hurt . period !
even the worse methadone detox i have worked with has never spoke of pain the that area .
i have been in the detox field for over 14yrs . and have worked with thousands of people detoxing from all forms of pain meds . not once was that ever spoke of pain in that area of the body. i have heard pretty much every other part of the body but there. so lets no go there . so it dont look like your reaching for any excuse!

[Chris]

Pre-LRP...Ibufrophen 3 times a day.

Post-LRP...Diclofenac Sodium 2 times a day. Amitrypityline 2 times a day. Lyrica 1 time a day.


Arnon, I want to ask you more questions--specifically about the Carbon Dioxide gas which is used during LRP. An anesthetist I questioned recently told me some disturbing stories. But not now, it's late where I am.......tomorrow maybe.

[imnotcrazy]

none of those medications would cause any withdrawl symptoms.
good luck chris , its a shame you got a bad doctor ! i have a list of them that are all harm and no good.
a damn shame.
GOD BLESS!

[Arnon Krongrad, MD]

The medications listed would not be associated with physiological withdrawal. They contrast with what I described earlier for the man who took MS Contin for years.

Things migrate in the body. Among items crossing my transom in recent times include a reservoir for a penile prosthesis and radiation seeds used in prostate irradiation. Others of which I am aware over the years include objects periodically passing through the urinary tract: clots, stones, renal papilla, sutures, one radio transistor, and one toothpick. A spit staple fits neatly into this cavalcade of migratory items and does not denote a "bad doctor."

Onward to CO2 whenever you are ready.