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Remember, this is not intended as a forum for medical advice, only discussion.

From: Dr. J
Date: 2/8/01
Subject: A Urologist's "Exceedingly Rare" Message

I read your story in the New Times. Your experiences are unfortunate, but contrary to your assertions, rare. I perform vasectomies in the North County [of San Luis Obispo], and have had very favorable outcomes. Pain is variable, lasting one day to two weeks, but after performing greater than 100 vasectomies and being involved in many more in residency, I have never seen, heard of, or been involved in a case of post-vasectomy pain syndrome. I have to agree, it is not talked about in our circles, and that is because it is exceedingly rare - not 6-25% as you assert! In my practice, greater than 75% of all my vasectomy patients have no pain three days after the procedure.

There is no doubt that people should be aware of your rare consequences - this should be included in "informed consent." I also respect the research you put into this and the responsible way you communicated in the article. Unfortunately, I can't say the same for the author of the article, who is misinformed about very important aspects of the procedure, and makes claims that perpetuate myths about vasectomies. First, the penis is not cut as one might infer from the picture on the cover. Second, there is not a consensus of information that links prostate cancer with vasectomies - claims should not be made either way! Anatomically and physiologically, there is absolutely no explainable relationship between vasectomies and prostate cancer. Autoantibodies and sperm granuloma are common, up to 40%, but rarely an issue.

Also, there are numerous ways to perform the procedure. The diagram is not universal by any means. I use the No-Scalpel approach, which does not require any incisions, just a 3mm midline puncture. I fulgurate (burn) the prostatic end of the vas and use fascial interposition to cover that same end with the "purse" that normally holds the vas. I do not ligate either vas deferens as depicted in the picture. As Dr. Clayton alluded to, the physician should take great care not to cut or tie the nerve, or the possibility of chronic pain increases, as one would expect.

Not all vasectomies are the same - not all people are the same - and not all doctors are meticulous and conscientious. We have never seen your type of complication, and I don't expect we will. The article in New Times, to some extent perpetuates myths and looks at the procedure very simplistically and from one perspective. I think the article will unnecessarily scare prospective patients, and moves us back in time with respect to options regarding permanent sterilization.

Vasectomies are invasive procedures, and with invasive procedures come risks - but so does birth control pills and certainly tubal ligation. People die from tubal ligation and general anesthesia - I have not heard of this complication from vasectomies. As alluded to, pain syndromes are not well understood and can result from any type of invasive procedure, not just vasectomies. I am positive that there are reports of similar circumstances with tubal ligations and other operations.

Your circumstances are unfortunate. I will certainly be more exhaustive in my informed consents, but your experiences are not exclusive to vasectomies. I think the article was a tad irresponsible, short sighted, and unnecessarily scared a community about a procedure that is effective, well tolerated, and generally safe. I sincerely believe that it is the best method of permanent sterilization versus tubal ligation, and a better answer than abortion or unwanted pregnancies.

Best regards!

Response: Where do I start with this? First, I sincerely appreciate you taking the time to express this opinion in an open and eloquent manner, Dr. J. There are several points on which we do agree, and several others where we will obviously have to disagree.

First, in regards to the rarity of my circumstance and other men like me, please note: "Chronic scrotal pain is the most common post-vasectomy complaint that may adversely affect quality of life in men undergoing vasectomy" Choe et al, Journal of Urology, 1996. "A third of vasectomy patients develop chronic testicular discomfort but only a few develop more severe pain that requires further surgical treatment. Informed consent needs to take account of this finding" McMahon et al, British Journal of Urology, 1992. Those are not my words, but the words of your colleagues in your profession. Based upon this, it would appear that while the extremity of my pain experience may be more exceptional, the incidence of chronic pain following vasectomy is quite commonplace. Even a little bit of this stuff can be agonizing. The problem, in my experience, is that most doctors do not discuss this issue in any form before surgery, as was my case and many others. Additionally, doctors often do not ask their patients about any pain experiences and when patients do complain, they typically dismiss patient's complaints about pain developing after the procedure in a variety of ways as being inconsequential, and quite literally leave their patients flapping in the breeze. This has been seen over and over again, even with doctors you know personally.

In regards to prostate cancer studies, yes you are right, there is controversy over this issue, and it should be presented to the patient as such. When I asked the question before my surgery, I was told that all of the studies demonstrating a link between vasectomy and prostate cancer had been "disproven." Actually, when 14 studies on the issue were analyzed by Bernal-Delgado et al and published in 1998, 11 of those 14 studies demonstrated a link between vasectomy and an increased incidence of prostate cancer. The key issue has been that doctors and researchers don't know exactly why this may happen, not that it doesn't necessarily happen. The information should be presented in this context, and again, let the patient decide what is relevant for him. In my case, I have a family history of prostate cancer going back at least two generations that I know of, and I would have wanted to know these facts in weighing my decision. I know I'm not alone in this.

My urologist used the No-Scalpel technique for my vasectomy per my request, as you use, and claimed to have performed over a thousand vasectomies at the time. I am sure that he is a competent and skilled surgeon in many ways, but the point is, negative outcomes can happen to anyone and have on a regular basis. This needs to be disclosed.

In regards to "scare tactics" used in the article, talk to any man who has experienced chronic testicular pain as the result of vasectomy about how scared he has felt. In regards to the lack of fatalities due to vasectomy, see Viddeleer et al, Journal of Urology, 1992, "Lethal Fournier's Gangrene Following Vasectomy." It's not pretty. Again, it can happen.

The core issue here is not sterilization, but contraception. Sterilization is just one way to accomplish this goal. The problem is that surgical sterilization, for men and women is often under-disclosed in terms of the risks and consequences. The same is true for hormonal contraception for women, though awareness about this issue is increasing. My contention is that if the truth were known about the effects of vasectomy and tubal ligation on the human body, most patients would choose another form of contraception. This also means that we all need to be more open about this issue, and develop better methods in the long run that do not sacrifice the health of the living for the sake of trying to ward off the unborn.

I commend your commitment to increased efforts at informed consent regarding vasectomy, and hope others will join you in that commitment. This effort of mine is not intended as doctor bashing, but as a wake up call to doctors and patients regarding an important issue. Thank you for answering the call.
 

From: CO
Date: 1/24/01
Subject: Docs Don't Really Know

Regarding the suggestion that urologists know how to treat those of us who get post-vasectomy pain, I beg to differ. I have been shuffled amongst many urologists. I was the subject of a conference meeting of 12 urologists in the Portland, Maine and Boston, Massachusetts areas. They had no idea what to do. They only expressed their views on what they personally wouldn't do. I have been to five pain clinics, and as of yet they really do not have the answers. Perhaps there is a silent conspiracy about post-vasectomy pain. The docs fear getting involved in such a hot and taboo diagnosis because they fear legal involvement and even worse fear the retribution form other doctors if they speak out. Every doctor I saw before the three-year sauté of limitations was up asked me if it was a legal case, and told me if it was, they wouldn't treat me. Doctors are too timid and afraid to do what their own profession suggests will work. There are a lot of documents that suggest EARLY interventions of many kinds (mostly surgical and steroid anti-inflamatories) are very successful in treating PVP. Yet all through the Northeast, including the Mecca of medicine in Boston, he doctors either don't admit to knowing or actually don't know of all these research findings. There are more articles on PVP from other countries than there are from the U.S. Is it any coincidence that the U. S. is litigation hell?

I really do not think the doctors know what to do with PVP. From the research I have found, it seems very apparent that until you stop the production of sperm, you will constantly have a supply trying to exit the testis and putting undue pressure on the tubules of the epididymis. If you do not shut off the supply, you are at great risk for continual leaks and sperm granulomas. I know a few guys who had vasectomy reversal to remove the obstruction and allow the sperm to pass without building up. These men no longer have pain. I know that the suggestions here end up making you think of drastic measures to relieve this simple plumbing problem of supply input without output.

Even in pain clinics that place intrathecal catheters in your spine and infuse morphine and other drugs into the cerebrospinal fluid, they are only hoping to interrupt the progression of pain impulses before they reach the brain. They have no real answers, only logical theoretical conclusions. But at least some of these doctors are willing to try. They demonstrate at least some analytic sense and investigative fervor. The doctors who fear getting involved don't. If any one of you finds a doctor that knows what to do, please post it here and we'll go see him or her. Now you know why I picked the email name "Ragingballs." They are raging in pain and I am raging in disgust for the lack of due diligence on the doctors' part.

Hope you are all getting better. I certainly am not.

Response: This opinion is difficult to dispute in light of his experience, isn't it? I've had good luck with the Pain Clinic at Stanford University Hospital in Palo Alto, CA. Dr. Steve Mangar has been excellent in his approach to my treatment. The pain clinic phone number is 650-723-6238. Mention my name to him and he'll get the picture of what you're talking about.

Kevin
 

From: DG
Date: 1/21/01
Subject: Kevin's Book

Great read. I just finished it. Good luck getting it published. Why not publish it online?

Response: Thanks! Several guys have told me that the book has told the story of their lives also. If any of you have a connection in the publishing business for the book, please let me know. A key issue for me is the appropriate marketing and publicity that will get the issue out in the public's eye, including online publishing. That, unfortunately, is where we need to go to spur action and change on the part of doctors.
 

From: DG
Date: 1/20/01
Subject: Why PVP is so often undiagnosed

Although Kevin doesn't believe in a conspiracy surrounding post-vasectomy pain syndrome, I call it a Conspiracy of Silence in the medical community. What we don't say anything about won't hurt until it happens. The urologists know how to handle those of us that get PVS. They aren't going to mess with a great financial windfall until it gets the public attention that it should.

Response: I have to respect your opinion. Oliver Stone would be proud.
 

From: KP
Date: 1/15/01
Subject: Drug Therapy

I'd like to alert everyone about drug interactions. I had my first appointment with my new pain clinic. The doctor was very professional and talked in depth about how I felt about all this. At the end of the appointment, he told me that I needed to take a new antidepressant because Prozac didn't work as well as Nortiptyline with the Neurontin I'm on. He also adjusted the amount of the Neurontin and Oxycontin I was on. Upon starting this new drug therapy, I noticed a slight tremor in my knees and hands, and found that I got irritable very quickly. I checked the PDR and it said that if you have been taking Prozac, you should wait four to five weeks before taking Nortiptyline. I am certain that anyone in a situation like ours shouldn't leave it up to the doctors and the pharmacy to be 100% correct. I know they should be aware of these interactions, but that's not always the case.

Response: My dentist once told me that medications are all "selective poisons," which is why you don't take too much of them as you would food. Doctors sometimes have a way of wielding medications with strong effects in a rather cavalier manner. Everyone's body is a little different. Listen to yours.
 

From: Kevin Hauber
Date: 12/15/00
Subject: Post-Vasectomy Pain Information Available

To anyone out there who is experiencing post-vasectomy pain and other complications, or anyone interested in the subject: I have compiled over 150 medical journal articles on the subject of vasectomy and its consequences which I would be happy to share with you. If you would like a copy of my book with a complete reference list, just let me know. My email is sadsacks@dontfixit.org.
 

From: DG
Date: 12/11/00
Subject: TV Story on PVP

I'm new here on this site, but have been through it all with my vasectomy experience. I know of urologists and pain doctors in the Southeast I could suggest for you.

I also have an undercover TV story that was done by an Atlanta station about what doctors do and don't tell us when we go in for our consultation. The story never got any further than the Atlanta area. If anyone has contacts in the TV business, let me know.

From all the research I've done the cure for chronic epididymal pain after vasectomy is a vasoepididymostomy reversal. I know of several guys who have benefited from this.

Dave
wyzguy@yahoo.com

Response: Let's tell the story in any way we can.
 

From: KP
Date 12/02/00
Subject: Castration doesn't solve PVP

My urologist told me that the only way to get rid of my pain was to take the testicle out. I've got news for him; it didn't work and now he doesn't want to have anything to do with me. Just two weeks ago, I called him to tell him that the pain was back with a vengeance. It took him four hours to return my first call, then the next day he wouldn't return my call at all. Really nice, huh? To all of you out there being told that this is going to help you, it won't work and it's just another way to get more money from you. I think a mandatory pamphlet disclosing these types of facts would turn a lot of heads

Response: The research on the subject of castration to alleviate chronic testicular pain shows mixed results. It seems that appropriate diagnosis is a key issue, which many doctors are not experienced enough to give.
 

 

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