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

From: EB
Date: 5-8-03
Subject: To Reverse or Not to Reverse

I appreciate your efforts to bring these issues to light. I had a vasectomy two years ago (closed ended). About 4 months later I started having pain when sexually aroused/having intercourse. I went back to my Urologist and described my symptoms. He said he'd never heard of anyone having such a complication. I even consulted another Urologist, a general surgeon, and spoke to a nurse in Urology at Duke. None of them had a clue about the problem.

It has felt to me like a "back-up" and I keep thinking that the vasectomy needs to be reversed. It wasn't until the last few days that I found lots of information on the Internet that seems to confirm my self-diagnosis. I faxed a bunch of information from the 'net to my Urologist and am going back to see him tomorrow in hopes of finding some help. I gather that insurance companies do not pay for reversals, but I am hoping for some kind of help. It's pretty frustrating when your doctor is clueless.

Needless to say, this is very unsettling. Any advice you can give me would be greatly appreciated.

Response: In regards to the reversal, let me say from personal experience that the surgery can be incredibly painful and difficult to recover from, so you need to be quite sure that pressure, ruptures and autoimmune responses are at the core of your pain experience. Another page of the forum has a picture of what I looked like after my reconstruction/reversal surgery. It is not a pretty sight. Give me a call at 805/459-8844 and we can discuss this further.

From KH
Date: 5-30-03
Subject: Anecdotes and prostitutes

Thanks for the site. I was looking for info and found it right there. I have a friend who is a doctor and he's letting me on his database, which he says is scary - Just forget about a vasectomy. By the way - 40% of men in New Zealand ages 40-74 have had the procedure.

Years ago, my best friend was thinking of a vasectomy, and I mounted a campaign to stop him, and was finally successful. Anyway, less than 2 years later his wife died of breast cancer and he had to start his love life over again. Phew!!

How about this anecdotal story? I was talking to a prostitute who has slept with over 10,000 men, and she says that men with vasectomies have really small testicles and penis, and they have trouble getting really hard, and often can't ejaculate. Sounds weird, but hey, would you believe a mechanic that said a brand of car was no good? You'd listen, eh?

More anecdotes: we were going over our friends and acquaintances, and of those who've had a vasectomy only one is still with the woman he had the vasectomy for. And that vasectomy was only 3 months ago.

And why is it that anyone (especially men) who questions the need for vasectomies,
is shouted down, mostly by women? I reckon life is risky enough as it is without messing with the tackle on purpose.

Response: That is the most unusual study technique I have heard of yet: not scientific, but hard to dispute! There are very few people (especially guys) who could attest to the size and sexual prowess of 10,000 men. My guess is that kind of information is not is your doctor friend’s database. As far as the relationship issues go, contraception tends to get tossed around like a hot potato. Most women are under the false impression that vasectomy is no big deal and is a quick fix. We know better, but unfortunately have had to live the downside of the untold story. Thanks for sharing these interesting perspectives and for helping to spread the word!

From: EC
Date: 6-9-03
Subject: Don’t make the mistake I did!

I went for a vasectomy pre-visit beginning of December 02 with a urologist. He described a simple procedure "no-laser vasectomy" which would take place in his office, could be done on a Friday, and would have me back to work on Monday. He described the risks as being "minimal" and that "very rarely" some complications occurred. I remember him quoting about less than 1 percent complication risk, and also saying these risks could be taken care of.

An appointment was made for the 10th Jan 2003 for the operation. Meanwhile I checked with friends who had it done, and one said he had complications, but all others (5 or 6) confirmed it was a no-problem procedure. I figured I had found one of the very few, though with hindsight my statistical side should have switched on.... But then I had the doc's assurances didn't I?! Additionally, I did a 3 to 4 hours search on the web, and mostly found the same stories: "easy", "quick recovery", "no complications, or very rare".
I wish I had done a search on "vasectomy pain" like the one that led me a few days ago to your site.

So on the 10th January I went for the procedure, and the doc began on the right testicle. I felt a sharp pain as he began, and mentioned it to my wife. I do a lot of very active sports, and I am quite used to some pain. My idea of fun is to surf a sand cliff in a kayak (yes you read correctly!), and once in a while pain happens.... Just to say that the pain I felt was well beyond a normal procedure. Well beyond what the Doc had described I would experience. When he moved to the left testicle, the procedure wasn't painful at all, a sign of things to come.

Upon returning home, my right testicle swelled to a hugely ridiculous, painful size. Not only was it swollen, it was very hard and there was obviously some small internal bleeding in the scrotum. On the Monday, rather than going back to work, I went in the doc quite worried, and he said, "These things happen, don't worry, take some time off, pain medicine and everything will be fine".

I took 4 weeks off (thanks to short term disability!), loosing 33% of my income for that period. The pain was almost constant, and I had to take Lortab, a strong pain medicine. Since I hate these things, I took as few as I could. I don't drink, smoke, or do drugs, and am in very good health: Pumping myself silly with narcotics is not what I want to do. Neither is sitting on a couch for any extent of time, let alone 4 weeks.

By the end of the 4 weeks, my right testicle was still enlarged, still painful: A dull lingering pain came in and out depending on the time of the day. The left testicle had returned to normal in 3 days, as in a successful procedure. In April, with no real progress, daily pain and a very hard spot on my right testicle the doc said I needed another operation to take a hematoma out. He led me to believe at first that that would take care of the problem, though as we got closer to the set date (April 24th) he starting saying that all operations have risks.

You guessed it: the second operation did not exactly improve things. After the operation I took another 4 weeks off work, was in pain every day, and popping pain pills as needed once again, hating every minute of it. I am normally very active; I lead a group of "lunatics" and we play hard every weekend, engaging in all sorts of outdoors activities.

Now my right testicle is larger than before the 2nd operation, although not as hard. The scar still hurts once in a while, but more worrisome to me is that the testicle is attached by some sort of tissue to the skin of the scrotum. I even wonder if the doc caught the testicle when closing the scar?

I am seeing a second urologist from the same office and he has not much to say apart from "be patient", and even after seeing some ultrasounds wasn't able to give me a good explanation to my problems: Even less of a real road map to solve it. He does confirm that the testicle is now linked to the scrotum somehow, though he gave no explanation. During my last visit, just as we were making an appointment for early July, he said if by then I was still in pain we could take the testicle out.... That's what sparked my revolt. I am now looking for a third opinion, from a pro that has strong experience in PVPS.

I am very unhappy to say the least, not that the operation failed (after all there is a risk and s***t happens), but that it appears from your web site, your links and documentation that the risk was seriously underrepresented, even misrepresented to me. If some studies say 27% of men suffer for the next year, I think my doc should have warned me so. I am fairly certain that presented with this accurate information I would NOT have gone through with an operation that, after all, I didn't need. I just did it for the convenience of not using a condom with my wife during intercourse. Not exactly a good reason to take a high risk of pain.

Now, as I see it, either my doc knows about those studies and says nothing to me (so he doesn't loose business?), OR he doesn't know about them (and he is negligent/unprofessional). Both cases are thoroughly unprofessional in my opinion. I didn't go to a local generalist, but to a reputed local urologist.

So at this stage I am thinking of a 2 pronged approach: First, and most importantly, take care of my medical condition. Your assistance in finding a top specialist is much appreciated. Any ideas and advice you can give me is also appreciated. Second, after I find out what is wrong with me, I will investigate suing my urologist. Not for money, I couldn't care less about money, but to force them to give full disclosure of the potential risks. Have you heard of similar cases? I can't escape the feeling that their "be patient" approach is to push me until the time limitation expires, not for medical reasons.

Well, as short as my first e-mail was, I sure compensated with this one. I hope I didn't overload you, and thank you again for your assistance. Being in pain everyday for 6 months now, finding someone to share the experience with, and finding some help is a huge comfort. Also, I would love to use the internet to heavily discourage men from vasectomy.

I guess you know vasectomies are forbidden in France: When I asked a female friend doctor in France (not in the same field as she is a cancer researcher) why vasectomies were forbidden she said she thought it was because the country is macho.... With hindsight I wonder if the French authorities know something we don't!!!

Response: I think the French must have a different level of respect for their natural apparatus vs. the opinions of urologists. That law is an old “anti-mutilation” law, which puts vasectomy in an interesting light.

The best doctor I know of in Europe is Dr. Malcolm Carruthers in London. He has written a book noted on the publications page of this web site discussing PVPS and related issues.

I understand your desire to force the doctor who did your procedure to disclose fully. I’m doing the same thing, and finding very little change occurring. So shining the light of negative publicity is the best medicine I can find now. Radio talk shows and TV news spots have been a good route, along with newspaper and magazine articles. If a number of us join together in chorus, it tends to get noticed.

I surely hope your physical situation resolves. Frankly, it doesn’t sound like more surgery will be helpful. Remember, when you are talking to urologists, they are trained as surgeons who know about cutting and sewing. The old adage applies: “When all you have is a hammer, everything looks like a nail!” Don’t get nailed in the balls any more if you can avoid it. Bodies don’t like that.
From: MS
Date: 6-14-03
Subject: Everything Changed

I do not know where to even begin to start…. I am married and a father of two. I decided to have a vasectomy this past fall. It has not turned out anything like I had expected. I was told prior that I would not feel any different afterward. Yeah, that’s coming from a surgeon that never had the procedure done on himself. I found that out during my procedure.

Basically my after life has changed and I do not know what to do. I stumbled onto your web site by pure luck. I would give anything to be my old self. My libido has dropped and my testicular region feels like a stopped up pipe, so to speak. Sexual intercourse has even downgraded for me. Orgasm is not as strong anymore and I feel like everything is backed up like a clogged drainage pip. Misery...What direction do I turn? I'm confused! Please help me....

Response: Doctors will try to tell you that nothing changes in your body after a vasectomy. You experience and that of thousands of others says otherwise. There are so many changes: congestive epididymitis, ruptures, hormonal, autoimmune, psychological, neurological, and so forth that are complex and varied. It is often difficult to determine just what the cause(s) of problems that develop after vasectomy are, and your doctor will surely deny that the surgery had anything to do with what you are now experiencing. Expect responses similar to what I received: “there must be something wrong with you,” as if the surgeon could never cause a problem. Or better yet, “You should get psychological counseling,” denying the impact of what genital surgery does to the physical structures of the body.

I hope your body can adjust as time goes on. I hear stories both ways: sometimes the symptoms improve, and sometimes they get worse. Let me know if you would like to discuss specific options further. Good luck.
From: C.J.
Date: 6-15-03
Subject: Vasectomy leads to castration

I would like to relate a tale of utter horror I have gone through with my vasectomy. In June of 2002 I had a vasectomy performed. Right away there were complications, namely an infection that spread to my testicles. After 3 rounds of antibiotics, my general practitioner referred me to a urologist who informed me that I needed a dual orchiectomy, in essence making me a eunuch. My wife was rather concerned about this procedure, but after 5 separate second consultations I knew I had to have the operation. The antibiotics had failed and I was in severe pain and had massive swelling in my testicles and scrotum.

The orchiectomy was performed and the pain and swelling subsided within a week. Now I was faced with the fact that I had to live my life as a eunuch and had some psychological problems to deal with. Months of counseling helped, but there was one more insult to add to my injury. My wife told me she wanted another child. We have 2 wonderful kids already. This reversal of her decision caused me to become very angry and resentful of her because of the shared decision we had made for me to get a vasectomy.

My wife informed me that she wanted to adopt another child, I told her NO, since I had become a eunuch and had to wear testosterone patches, she would not get to adopt a child. She had her chance to have another child when I was still fully functional. As you would expect, this has caused friction in the relationship, but too damn bad! I made the ultimate sacrifice for our relationship and I will have a large say on how our lives will progress.

I used to be a robust man of 6' 5", 220 lbs. Now I weigh 153 lbs. Quite a change, I think most of it is due to psychological factors, but never the less, I cannot put on muscle mass even though I eat right and work out diligently.

Since the operation I have been non-functional sexually and have erectile dysfunction. Viagra does not do the trick, I need to use that damn Caverject, you know-the tube you have to stick in your penis to squirt the Caverject compound into the urethra.

Sex is actually painful for me now, my wife tries to understand, but she cannot fully understand the physical changes a man goes through when he loses his "manhood." I take full responsibility for my actions, I underwent the vasectomy because my wife and I had decided not to have anymore children. It was also a shared decision as man and wife. To this day she is reluctant to accept any responsibility for her part in the decision process. I understand her: She cannot accept the fact that she played decision role in my mutilation.

The final insult to this nightmare happened on my 35th birthday. I had just come from an appointment at my urologist for a 90 day post-op checkup. My wife had a planned a birthday party for me, I arrived and was talking with my friends and having a good time, suddenly I felt some something warm trickling down my leg, I had urinated on myself. There was no urge to go to the bathroom; it just happened. I was highly embarrassed by this situation. While I went to the bedroom to change clothes, my wife actually told some of our friends that I had a botched vasectomy and had another operation to remove my testicles.

So you now can add incontinence to my medical issues. My friends never looked at me the same again after my wife told them my complete shame as an ex-man. That night I packed my stuff and moved out, I told my wife I could not put up with her intentional breach of my personal privacy.

My urologist thinks that there is some residual nerve damage from the operation. I am now on three different medications for incontinence, loss of testosterone (the patch), Xanax, and Procain tablets.

As it stands now, I have reconciled with my wife. I needed her to accept her role in what had happened to me, and through counseling she finally accepted her role in the nightmare. I laid down some fairly tough needs and desires that had to be met by her if our relationship was to stay alive. I would not compromise on several key relationship issues: It was a "take it or leave it" situation.

To all men thinking about a vasectomy: DON'T DO IT! Condoms are much cheaper than your manhood. If your wife or girlfriend's pressure you to have a vasectomy, tell them to have a radical mastectomy and have them think how they would feel afterward.

Response: Every time I hear a story like this, and it has been numerous times now, I find it hard to believe that such horrific things can occur because of this "simple" procedure we all have been talked into. And to make matters worse, the relationship that was to benefit from the vasectomy to begin with can be destroyed by the results. But here is the bottom line: You didn't know this could happen, and neither did she. If you had known, you would have made another choice, and so would she. This is the result of a system that plays down the risks of messing with nature and avoids true informed consent. The problem is, if the doctor has a bad day, you get to live with the results, not him. Some have even died from the results.

I wish I could offer you some consolation or words of wisdom that might make things better, but I don't believe that is possible or appropriate. I commend your willingness to share your story for the benefit of others. If there is anything I can offer you that would be of assistance, please say so. I will gladly share the research and story in my book with you if it would be of any benefit. I know there are many others who have to contend with the same types of issues you mentioned. This is not something most people can understand unless they live the nightmare, so if and when you need an sympathetic ear, let me know.

Can I send you a copy of my book (free of charge) on disk with the bibliography that may help you with references about testosterone therapy, nerve pain and the other issues you are facing? I'd be glad to do so if you will give me a mailing address to use.
From: MR
Date: 6-23-03
Subject: The pain is going away!

You may remember me sending you some emails about 'my nightmare' vasectomy. I hope that this email finds you fit & well.

Since having a reversal about 3 months ago, I am feeling better by the day, I don't have PVPS anymore and I am not waking up thinking of suicide anymore. I am still a little uncomfortable because of the reversal, but I believe my body will heal itself given time.
I am really ripping into the local NHS clinic where I was butchered. I have to say I am enjoying it! They are really wriggling and squirming, trying every trick in the book to avoid giving any straight answers. I shall persist using every channel available to me.

I have a friend at work whose brother is seriously ill due to liver failure; some kind of autoimmune problem. He was fit and well up until this year. He had a vasectomy about 5 years ago. My friend wondered whether there might be a connection? I thought you would be the best person to ask.

Response: I'm glad to hear you are feeling better. I have a friend locally who had his reversal a year ago after several months of serious pain following his vasectomy. He now says he is 99% better and the nightmare is over for him. I hope the same is going to be true for you in the long run and I am glad you found out what you needed and got the care you needed in time. As far as your friend goes, the autoimmune cascade vasectomy sets off is so extensive that anything is possible, even liver disease such as you mentioned. You may want to check out Dr. Roberts’ book specifically in this regard. See the publications page. Also, the American Autoimmune Related Diseases Association has a web site and information on over 80 different autoimmune diseases, so you may want to check that source for info. Be well.
From: LF
Date: 6-25-03
Subject: Thanks

I'll gladly express my appreciation for your posting your vasectomy experience and that of others on your www.dontfixit.org website. I had PVPS pain as well as anxiety over my predicament for over a year after the procedure and turned to the web for information. Your website provides a wealth of information and moral support for those thinking they could be suffering alone (They clearly aren't).

Kevin, I hope your litigation will be successful for your own compensation and also as a catalyst for change in informed consent requirements for persons considering vasectomy. The public must be informed of the notable risk of having PVPS after the surgery which is documented in urologist's own journals. Information pamphlets dispensed by urologists must accurately report this risk. If anyone doubts incidents of PVPS are significant they should note the opinion of a practicing urologist who I saw separately for my pain. He said he quit performing vasectomies early on in his career due to high incidences in testicular pain in his patients. Thanks again Kevin.

Response: Thank you, and I’m glad you are doing better. I couldn’t agree with you more about the need for the truth to be told up front.
From: CP
Date: 6-27-03
Subject: Why wasn’t I told?

I'd like to think I made a knowledgeable decision to cancel my vasectomy that was
scheduled for today at 9:30 am. Before yesterday, my main source of vasectomy related information came from vasectomized friends and www.vasectomy.com. Both of those sources claimed how easy a vasectomy is and the fact that millions of men have had it done.

Then a few days ago, my neighbor mentioned how some men feel pain for extended periods of time after a vasectomy. How come I did not read anything of the sort? I visited the Google search site and typed in vasectomy + pain. Low and behold, www.dontfixit.org was returned as a match. I spent a good deal of time navigating your site and reading horror stories from vasectomized men.

During my pre-vasectomy consultation, why didn't my doctor mention possible post-vasectomy complications? In fact, prior to my consultation, I had done some research and realized that prostate cancer may be linked to vasectomies, so I mentioned it to my doctor. His response was quick and short by saying those claims are untrue.

Unfortunately, my scheduled appointment was well publicized throughout my circle of friends (including wives). My wife was extremely disappointed after I broke the news of my cancellation to her. Her response was "how come everyone else that has had it done is fine?" I'm already facing ridicule from friends and expect more of it in the next few days.

I'm really interested in long term studies and how vasectomies may be linked to other complications such as: prostate cancer, testicular cancer, kidney stones, etc. If the medical field is "sweeping these issues under the carpet" they need to be exposed. According to what I've read, a small percentage (2 - 3%) of vasectomized men encounter life-changing severe pain after a vasectomy. I think the numbers may be higher because men are not speaking out.

I commend you for creating an open forum where men can explain their vasectomy related experiences and providing an opposing view to the well accepted claim that vasectomies are an easy and safe birth control mechanism that millions of "happy" men have undergone. If you would, please reply to this email and attach the manuscript. I will read it and spread the word. Thanks so much.

Response: I'm glad you have been able to find this information before the procedure was done. The two main problems that you wouldn't normally be advised of beforehand are that (1) No one can predict how your body will react to the procedure or if the doctor will have a bad day and cause a significant injury, and (2) Once the problems and reactions start, they can be nearly impossible to stop. The question of how many men aren't willing to speak out is completely valid. When men are surveyed about the problems resulting from their vasectomy procedures, the numbers are much higher than what doctors typically quoted for complication rates. So who are you more willing to believe, the car salesman, or the car buyers?

Don't worry about everybody's criticism of you for not having the vasectomy. It's not their body. Ask them if they'd be willing to have their genitals removed as a sacrifice if something goes wrong with your vasectomy and see what they say.

The book is too large of a file to send over the Internet, but I’d be glad to send it to you on disk, or you can order it in paperback from the publisher. The research you asked for is in it. Share some of the facts with your friends and their tune may change.

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