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From: MR
Date: 1/27/03
Subject: My nightmare

I only wish I had read your article 'If It Works Don't Fix It' on the internet 26 months ago when I had a vasectomy. I was given a short counseling session (about 5 -10 minutes) immediately beforehand by a female counselor who, once establishing that we did not want any more children, gave me the following advice: “You’re lucky that the NHS (National Health Service) is paying for this operation it would normally cost you £180. It's much simpler for a man to have the operation than a woman and it's easier to reverse, although if you do have it reversed you will have to pay to have it done privately at a cost of approximately £1500. You will have to sign this disclaimer which basically says that if your partner becomes pregnant after the op you can't take legal action.”

The vasectomy was 'bi-lateral' (all 4 ends being sealed electronically) the only type available on the NHS. My concern was that sperm could build up in the closed tubes from the testicles and cause obvious problems. I was told not to worry about this as about 50,000 sperm would fit on a pin head. However I was not told that my testicles probably produce 50,000 per minute. Great! Anyway I foolishly went ahead with the operation and have lived to regret it. I suffered with PVPS for a good 6 months afterwards. I went to see my Dr and asked for a reversal. However he said that I would have to be referred to a consultant urologist and there was no way that I could have a reversal after only 6 months, I was told that the pain would probably go away in time.

Yes, for the next 12 months it did ease, but sex was never quite the same. Yes, I could get an erection, and yes I could ejaculate, but it’s not the same. I got pains after sex and also after any heavy lifting. Ever since the operation (I now call it my injury!) I have to wear tight fitting underpants 24/7 because I am uncomfortable. I can't remember exactly when my latest problem began occurring but certainly it was within the last 2 years. I have been a police officer for the last 21 years and work shifts. I suddenly found that I was not sleeping properly. Over the last 2 months, it got much worse - chronic insomnia. I have been off sick from work for about 6 weeks and only sleep about 1 - 2 hours per night. The rest of the time I have been pacing up and down wearing out the carpet or looking on the internet trying to find a solution. The many different sleeping tablets that I have been prescribed from the doctors no longer work properly as I have become tolerant to them.

I have been told that I have depression and that is why I am not sleeping. I suspected that somewhere along the line it was to due to the vasectomy and now I think I know why:

I have had a long term mild depression for about 15 years or so particularly during the dreary winter period, known as SAD (Seasonally Affective Disorder) in England. I always managed to cope with it on my own though. There is also a history of depression in my family. I discovered from a recent TV program that scientists have now discovered why we sleep; its all to do with the “hypothalamus” in the brain, when it releases a chemical/hormone known as “Olrexin” we wake up, when it doesn't we sleep. It's as simple as that (see www.bbc.uk/science/horizon/2003/narcolepsy/shtml ). As I am sure you know the 'hypothalamus' in conjunction with the “pituitary gland” is also responsible for producing other hormones such as “lieutenizing hormone” for testosterone production and “follicle stimulating hormone” for sperm production.

I believe I am correct in saying that when a man has a vasectomy the above hormones become unbalanced. I believe that this has happened in my case and my hypothalamus is now also releasing too much Olrexin, hence I am not sleeping. My doctor thinks I am mad! I now practically have to beg for a reversal even though I am paying the £1600 which I have had to borrow plus the £60 I have already paid to see a consultant. Oh, and now the PSVP is back! My doctor and the consultant are saying, “We don't think that you should have a reversal for that reason.”

I have had to take a blood test to see if my hormone levels show that I am good candidate for a reversal. I should get a result at the end of the week. However I honestly believe that they will refuse to do the operation on the grounds that I have mentioned and the fact that I have depression! Oh, and I also have had to get my wife's permission! I am going to have to fight this one! I only hope that, when I do eventually get a reversal, the pain will ease and I can get some normalcy back in my life. This just seems like a nightmare. I have got a lovely wife and 4 beautiful children so I have to be grateful for that. I wonder if you might have some information which would back up my theory?

Response: Thank you for sharing your story with me. I really understand how distressing this must be for you and I know what effects PVPS has on sleep (or lack thereof) energy, depression, and overall health. If a copy of the manuscript to my book would be helpful detailing the numerous medical journal articles showing hormone level changes following vasectomy, I will be glad to send it to you, just let me know your address. Be aware that the doctors may not want to be confused with facts since they obviously think they know what you should and shouldn't do. But then again, it's not their pain, is it?

I can get word out to other men in the UK to get referrals to doctors who really know what they are doing with PVPS, or give you the names of several in the US if you want to come here. Dr. Malcolm Carruthers in London is most familiar with PVPS, and hormone related problems related to vasectomy. His book and contact info are on the provider page and publications page of the web site.

If your pain is truly congestive in nature, a reversal can help. If there is nerve damage also, you may have only a minimal improvement as I did. It may be worth going on testosterone therapy for a while to diminish your sperm production to test the reversal theory. If you hurt less after several months, the chances of a reversal working would be better in addition to diminishing the body's autoimmune response to sperm in the bloodstream in the meantime. Doctors will look at you cross-eyed when you ask about that too, but believe me, it works and has led to a cure for numerous men.

Please feel free to call me in the U.S. at 805/459-8844 if you would like to discuss this further, or if any of the medical journal articles in the reference section of the web site might be of assistance.
From: MC
Date: 2/1/03
Subject: Erectile dysfunction following vasectomy

After having a second child, my boyfriend and his wife at the time, decided that he would have a vasectomy. Up until that time, he had had no sexual dysfunctions at all. After the vasectomy, however, he found that during intercourse, it was very difficult for him to maintain an erection long enough to reach an orgasm. I don't know why he didn't tell the doctor at the time. When I asked him why he didn't tell the doctor, his response was, "What could they do?" (He was 26 when this occurred.)

He is now 60. Recently, he tried Viagra which he bought through the Internet. It did not seem to help him maintain an erection. I have told him he really needs to see a doctor. Everything I have read so far says that having a vasectomy will not affect your sexual functioning, but it certainly did in his case. Could something have occurred as a result of the procedure that is causing this condition? And can anything be done at this date to help him? Thank you.

Response: Despite what many sources will claim, vasectomy can have major effects on sexual function. Most doctors will pass this off to psychological effects and castration anxiety, which are quite real, but study after study has shown that vasectomy affects many nerves along the pathways that contract during orgasm. Also, scar tissue builds up and the more fertile a man is, as in being a virile 26 when the procedure was done, the more scar tissue is likely to build up.
Prostatitis is more common after vasectomy and can most definitely affect sexual function, and so can the pain that often accompanies sexual excitement after the procedure. You didn't mention whether his ejaculations were ever painful after the procedure, but many men find this to be the case and don't want to say anything about it to their mate or a doctor because of all of the shaming and embarrassment men have grown up with that surrounds their genitals, especially when those kind of judgments come from an authoritative source, like a doctor.

Other problems in the genital tract can be exacerbated by the presence of the antibodies that form after vasectomy. In short, there are many reasons that a large percentage of men experience a change in sexual function after the procedure, which has been documented in numerous studies aside from anecdotal experiences such as you have shared. Because of the permanence of the procedure, though, many are unlikely to admit the problems, and some don't even want to recognize them, and neither do the doctors because of the liability involved.

The code of silence most men maintain about this kind of problem is a major reason why it continues. The fact that it is you, the partner, who has made this contact, as is the case so many times, is an example of the socializing problems that perpetuate the attitudes and shame surrounding the issue. I am amazed how many times men are suffering, but will not reach out for help. I am also amazed at how many times when men do finally reach out, they are completely rebuffed by their doctors and shamed back into silence. That is the shame, and the only shame, of the situation.
From: SC
Date: 2/3/03
Subject: Getting the truth in advance

I am Researching whether or not I should get a Vasectomy and I found your site as one of the few places to tell the other side of the story. I never accept the pro-medicine side which always glosses over the dangers to get you to utilize their services. I read all of your site and several others and ordered several books on the subject. I would now like to read several of the references you have listed on the site. I am requesting assistance in accessing that Information, it seems like you did massive research to get this stuff. I know that you know how crucial this decision is and I want to have all the facts. I would like to start with # 3, # 14, # 15, # 21, # 24, # 26, # 37, # 39, # 44, # 45, # 49, # 61, # 67, # 72, # 89, # 95, # 118, # 124, # 131, # 138, # 148. I commend you for doing this great service to the world after your experience. Please let me know ASAP, because within the next week or two I will read all those books and come to a decision. Thank you in advance for your time and consideration.

Response: I assume you are referring to the references I have cited on the web site and want a copy of them. I'd be glad to help you, just let me know what address to use for you. Thank you for your feedback about the web site. My sincere hope is that it helps other men like you avoid serious problems because of the spin and half-truths that are propagated about vasectomy. If you can know about the changes that definitely will occur, and what the painful ramifications can be, and choose to go ahead anyway, then at least you are going in with your eyes open. However, I feel that many men, including myself, would never willingly subject ourselves to the kind of dangers inherent in the procedure if we were just told the truth. But then, that would undermine an entire industry wouldn't it? Most of the medical sites are more sales vehicles than true information sites. It is conceivably difficult to ask a doctor to tell the whole truth about the negative side of something he is going to make a profit on. That is why I have chosen to let the recipients of the procedure tell their story, and only bring in the doctors who are truly willing to empathize and listen. I'll look forward to your response about where to send the information and what else might be of assistance.
From: GL
Date: 2/5/03
Subject: Anxiety before vasectomy

My wife scheduled an appointment for a consultation with a Urologist and the surgery date. I've already had the consultation two days ago. I experienced a lot of anxiety prior and during the consultation. The surgery date is in about 3 weeks. After stumbling onto your website, I am having serious second thoughts and thinking of canceling the procedure. I'm anxious and stressed out just thinking about it. Any advice? Thanks.

(Additional message) Kevin, I just e-mailed you but I had to share something else with you. The other day after my consultation with the urologist my wife said to me, "You don’t have to do this if you don’t want." Well I felt like it was my duty to do it and spare her from having a tubal ligation. So not even two days later after viewing your website and several others, she saw what I was viewing and said, "Don't look at that; it'll just scare you." Well I told her I'm not doing it, and now she's mad. I knew she would be disappointed. But after hearing the horror stories, how can I go thru with it?

Response: Your body is giving you signals for a very good reason. What is being proposed is not natural, and will be a significant insult to your genitals in particular and your body in general. No one can predict how you will react or what the outcome will be, and once the deed is done, in many ways it can never be undone. I can understand your wife's anxiousness to resolve a pressing birth control issue, but ask her how she will feel if you end up with years of testicular pain or other problems like I and so many others have who went in with the same good intentions. If she wonders how it might be for her, let her talk to my wife.

I'd be glad to discuss this with you and can completely empathize with the anxiety you feel. Those feelings caused me to cancel my vasectomy procedure the first time in 1995. It was only after another doctor assured me that his technique was so good, and he was so good at it that I nothing to be concerned about, that I agreed to go ahead with the procedure in 1999. I have been in constant pain for close to four years after 15 surgeries, 182 medications, and dozens of therapies and doctors have tried to resolve the problem.

The costs have been in excess of $400,000 due to medical expenses and lost wages, and the doctor still says, "Gee, I don't know what could have gone wrong" and is still refusing to tell men the truth about what can happen. It would cut into his profits too much if the truth were known upfront, since most reasonable men would opt not to do the procedure. No one ever told me of the changes that will happen to a man after a vasectomy, and the disastrous results those changes can bring, even after I asked directly about complications. Many doctors will claim this kind of result is rare without qualifying what that means, but when you talk to the patients you get a different story.

You are much better off to use the best barrier method of contraception available to both of you, or several at a time if you want, and incorporate some of the more scientific natural contraception techniques now available, or even alter you sexual practice enough to minimize the risk of unintended pregnancy than to have either of you sterilized surgically. It's just too risky with no path of return guaranteed. Anyone who tries to guarantee anything for you is either ignorant or lying. If you would like any of the medical journal articles that back up what I say, I'd be glad to share them with you and your wife. I realize this is a very strong opinion, but it has come from a really agonizing experience that I didn't even realize was possible, and I don't want to see anyone else have the same result. Many others would tell you the same.
From: JM
Date: 2/6/03
Subject: Painful lumps

I am writing to you because we have only just begun the nightmare journey. My husband had a vasectomy in November of 2001, and ever since then, has had lumps and pain in his testicles. His doctor has given him antibiotics to take once, but other than that, has pretty much brushed him off. He has another appointment on the 10th, because the lumps have gotten bigger again.
I saw mention of hormone therapy on your website, where can I find more information on this? It is very hard to find any type of information about difficulties resulting from a vasectomy!! I have spent hours on the internet trying to get answers that his doctor doesn’t seem to want to give. Thank you, ahead of time, for any help.

Response: I hope the appointment on the 10th went well, though with what you have said, I have to wonder. I can get you copies of the World Health Organization studies from various medical journals that detail the trials of testosterone therapy to eliminate sperm production in men. Or, alternately, I can send you a copy of the manuscript from my book (at no charge) that references all of them and tells the story of how I developed and implemented this idea with the help of several of my more open-minded doctors. Most doctors want to just treat the symptoms if they try anything at all. You need to get to the root cause which is continued sperm production by the millions each day causing the immune system to go wild and form the lumps you spoke of.

Which brings me to the next point: Being "brushed off" by the doctor who did the original vasectomy is a common experience, so you will likely need to see someone who actually treats men for post-vasectomy pain and other problems in an honest and progressive manner. Unfortunately, doctors of this type are few and far between, but if you let me know where you are, I'll try to refer you to someone. If you go with the information and references from the book in hand, you will probably be better off getting what you want.

Just so you know, I started out after a reconstructive surgery three years ago with MRI and ultrasound studies that showed epididymitis (swelling of the epididymis), hydroceles (fluid cysts in the scrotum), and an epididymal cyst (a lump of trapped sperm in the epididymis), all of which went away after several months of testosterone therapy when my sperm count fell to zero. When I went off of the testosterone therapy for several months, all of those symptoms came back. This pattern repeated itself again when my testosterone therapy inadvertently ran out prematurely in the middle of last year and I became fertile again. Once again, getting back on the testosterone therapy resolved those symptoms. Other men have experienced similar results.

In my case, there is underlying nerve damage that is aggravated by these autoimmune responses that occur when I am fertile, so I not only experience pain, but feel sick like I have the flu every few days. That pattern has diminished since I started the testosterone therapy, and I am left with the nerve damage (neuropathy) pain to contend with, which is more than enough, but at least I can get out of bed on most days. I'm hoping your husband's situation is not so severe in regards to the nerve damage, but regardless, using the testosterone therapy to eliminate the autoimmune reactions will give him a good chance of getting rid of the lumps without further surgery, or at least making it easier if there is something further that really is needed in regards to surgery. Let me know if there is any other information that would be helpful, and be cautious.
From: LE
Date: 2/8/03
Subject: Pregnant after vasectomy

I found your web site from as a link from the NFP discussion board. I work in the OR, and for some reason I don't have the "guts" to ask one of our docs. I have a friend who had a vasectomy several years ago. He was in his mid twenties, and had no children, and was unmarried. I don't know why the doctor did it; I know here they won't do a tubal ligation if you don't have at least two children or you are 30. Anyway I know he has numerous problems, he wakes up several times I night to urinate.

In July of 2001, I became pregnant. I had all the symptoms of pregnancy, but I didn't think it was possible because of his vasectomy. I finally bought a pregnancy test, and it was positive. I had an ultrasound done at the doctor’s office, which confirmed it. Two weeks after the ultrasound, I started cramping and bleeding. A week later, I had an Hcg count done, and it was less than 5.

Anyway, when I showed my friend the pregnancy test, and told him about the ultrasound, he had a hard time believing it. I've begged and begged him to go and get his prostate checked, from all the urinating he does at night, but he refuses. So I have two questions. Have you ever heard of the vasectomy failing, even after the initial 90 day sperm count check? Have you heard of frequent urination has a side effect of vasectomy? This is a young man, he just turned 30. Thank you for your help.

Response: Yes, vasectomies do fail. Very cocky doctors will claim a zero failure rate. My original urologist did, then, several years later, I saw an acquaintance for whom my original urologist did a vasectomy. The man and his wife had just conceived his fourth child well after he was given his clearance from the doctor, confirmed by DNA tests and all. The man was more than a little upset.

Actually, in the literature, studies have shown failure rates as high as 6%. Here’s why: After the vasectomy chronic inflammatory responses set in as a result of the autoimmune reactions that occur when sperm ruptures out of the vas or epididymis and gets into the blood stream. The higher the sperm count, as in a virile young man in his 20’s, the higher the likelihood of an autoimmune response.

The most common chronic inflammatory reaction is a lump called a granuloma or vasitis nodosa depending on the form it takes. Often this occurs at the cut end of the vas, and becomes large enough to reach the other cut end of the vas and form a channel for sperm to escape. This is called “recanalization.” Commonly, these pregnancies get blamed on the milkman in error or in anger, which causes a great deal of relationship/marital discord.

Another common response to the autoimmune reaction inherent in vasectomy is that a man’s prostate gland becomes inflamed from the autoimmune response too, causing various forms of a condition known as prostatitis. Check out www.prostate.org/vasectomy.html and see for yourself. Frequent urination is just one sign of this type of prostate problem, and, yes, he should get checked out or he could really suffer as he gets older. Finding someone in urology with a bit of compassion in these matters can be difficult, and don’t expect any doctor to admit that the vasectomy led to his prostate problems, but go ahead and find someone anyway. I can try to get referrals for you if you like.

Most men are extremely reluctant to have anything checked out in the area of their genitals with all of the shaming and conditioning we receive while growing up about “those parts down there.” Often, I’ve heard of men in excruciating post-vasectomy pain unwilling to do anything about it, and in the end it has been their wife or girlfriend who contacts this web site to find out what’s going on and what to do.

On one hand it’s unfortunate that this is the case, on the other it is a real health hazard, and also prevents many doctors from fully knowing the ramifications of what they are doing in performing these procedures. This attitude is reinforced by the doctors themselves many times, so when a patient comes in with this kind of complaint it is either discounted or the doctor tells the patient it is all in his head and to go get psychological counseling.

In the case of pain, the other extreme I hear often is that the doctor says if the problem continues, he’ll need to remove the man’s testicles. These are all effective ways of getting patients not to come back and spoil an otherwise perfect track record for the doctor.

The truth is beginning to come out though. In my case, I’ve been very open about what happened, and dozens of men locally, some of whom were my friends and acquaintances before my vasectomy, have told me of their horror stories surrounding their vasectomies and the side effects they experienced. I see it as a step toward good health when a man can open up and discuss any part of his body that he has a question or concern about. Let’s all keep on encouraging that, and expect our doctors to listen and respond appropriately and maybe these nightmare scenarios will occur less often.
From: MA
Date: 3/4/03
Subject: The numbers don’t add up

I have recently been thinking about getting a vasectomy, and have wondered about many of the items at your web page, and would be very interested in your book. One of the more interesting areas for me is the fact that I have Hashimoto's syndrome, which is an autoimmune disorder where my body has attacked my thyroid, so that I am now hypothyroid. I don't want to complicate that even more.

I found your information to be informative, and am interested in searching the studies on which you have founded your conclusions, especially those on statistics. I thank you very much for helping me rethink the procedure, and am kind of pissed at the "medical establishment" for not giving a clearer view of this.

Interesting anecdote....I was trained in college as a chemist, and now work as a business analyst. I have discussed vasectomies with many men, and the anecdotal evidence even supports your claims. Half of the men I have talked to have had painful, extended after effects which have lasted at a minimum of 3 months. Because of this, I have been searching more and more materials to find if the "other point of view" existed. Please keep me informed.

Response: What address would you like the book sent to? By the way, one of the confounding factors in getting to the truth of this matter is that the data about problems from vasectomies comes from the doctors who do them for a living; a compromising position to say the least.

When you talk to the men who were on the receiving end, the story is much different, and studies which did surveys of patients have found this to be true. I'll be glad to get you whatever information you need in your decision making process.

By the way, one of your best resources about the interrelationship of autoimmune diseases and circulating immune complexes may come from the American Autoimmune Related Diseases Association. They could offer you a surprising perspective on the extent and severity of autoimmune conditions and good reason for not wanting to induce one in our bodies with a procedure such as vasectomy.
From: MH
Date: 11-18-03
Subject: Genital and relationship pain

After reading the info on your website, I have struggled with the decision on what to do with my pain. It sounds like there is no easy answer. I have done all the antibiotics I'm going to do as well as Vioxx and the rest of the crap. For me, I guess the best thing to do is to return my body the way God intended it to be. I guess that's why I have chosen the reversal. For the past year I have been talking with Dr. Sheldon Marks from Arizona. Have you heard any things about him and his skills??? He and his partner do one reversal a day, 5 days a week and have for the past 17 years. I have done a lot of research on this guy and have spoken to him on 3 different occasions by phone. He does about 10-13 reversals a year just for pain. The rest are for fertility restoration purposes. He was very honest about my chances for a reversal of the pain. He basically said there is no way of knowing. Some guys get relief and some do not according to his experience.

My pain started out as prostate pain only about 2 years following the vasectomy and has gradually turned into epididymitis with increased pain. I'm 8 years out and didn't have a bit of trouble from the initial surgery therefore I feel it is basically congestive epididymitis. From what I understand that has the best chance of getting relief from a reversal. Dr. Mark’s fee is reasonable. Total inclusive price is $6,800.00

As far a sexual functioning, forget it. My wife and I haven't had "successful" sex in months due to erection problems and premature ejaculation problems. She basically doesn't want to mess with me and my frustration levels. She has basically given up on me and the marriage. I don't know if the reversal will reverse the attitudes and frustration. It's basically an issue of psychogenic impotence now. Maybe the reversal will add some relief. Do you have any thoughts on the functioning aspects - sexual functioning with problems you had???

Thanks for listening. At this point I am in contact with a lawyer to possibly go after the urologist that did this. I don't believe the consent form said anything about PVPS.

Response: I'm putting a disk with the book on it in the mail to you today. Let me know what else might be helpful.

Testosterone therapy has helped me both in term of pain and energy levels, and libido for that matter. I can offer a more detailed description if needed, but others have found this to be true also. Interestingly, this is one type of therapy prescribed for erectile dysfunction, which is a common result of vasectomy.

As far as sexual function goes, I can say for myself that pain and fear of increased pain are huge factors. I usually try to sit in a warm tub for an hour or two before attempting intercourse to get my pelvis to relax as much as possible and to mitigate pain initially. I found Oxycontin helps keep the spikes minimized, and Viagra helps with erections since I have to stop often and wait for waves of pain to pass, but these are band-aids at best. Beyond that, being very cautious and non-goal oriented (i.e. not ejaculating each time) are key since rigorous thrusting and ejaculating tends to make my groin feel like it is in a vice. Consequently, intercourse doesn't happen very often for me either. There are some resource materials I can recommend as reading on the subject of "retraining" your body's sexual response, which I have found quite necessary.

The reversal may be a good idea depending on the skill of the surgeon and how well your body reacts to surgery. The testosterone therapy may help minimize the autoimmune response and chronic inflammation that follows reversal.

My heart goes out to you. I know this is a miserable circumstance that affects every aspect of life: health, relationship, work, play, everything. Let me know how I can help if at all possible. My number is 805/459-8844.

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