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Spreading the word to stop the butchering - it's time to take action


#1

This has been bounced around in several threads, but I’m not sure if we have an official thread for this, so let’s decide on our plan of action to change the course of the vasectomy industry. I spoke to my attorney yesterday and I have no case against my vasectomy doc (statute of limitations) and he says we can’t take on the AUA. His advice was to spread the word through any channel possible, especially big media.

The web is littered with PVPS posts, yahoo replies, various forums (this being far and away the best), and websites. I’m sure there has been an impact, but it’s not enough. PVPS is obviously widespread and varies in severity. We simply need to join together and get the word out. We have to make the risks known by the larger public. We have to make it something every man thinks about when contemplating a vasectomy. We have to make an impact on women fighting to get their men cut. And finally, we have to make the doctors have to consistently deal with the reality of PVPS when selling their vasectomies. We won’t succeed until doctors and women face an uphill battle to sell a vasectomy.

We have to get studies started, the literature changed, required proper notification to patients updated, the risks mainstreamed, and choke the vasectomy industry. I’ve never cared about suing my urologist for the sake of money. I just want to stop the butchering. We need to gather PVPS sufferers from across the web to strengthen our ranks. We have to decide on a plan of action and move forward. Even if we have to change our plan along the way due to setbacks, we have to stay focused and keep moving forward. We need to move on many fronts at the same time. Let’s brainstorm the plan here, make some decisions, and roll. It’s time to take action. We won’t be brushed off as a false statistic any longer. Post your thoughts and give your opinions. And remember, we’re going to make a change because this isn’t academic any longer.


#2

I always thought a letter writing or awareness campaign. Two letters. One in general and one for the providers of guys that end up here or an attachment that says “You are receiving this letter because one of your patients is a member of our community etc…” Mail them out and keep track of providers that receive them with verbage like “We have kept a record of sending this correspondence to you for reference to members of our community and any future patients who wish to know who has received our literature etc…”

That way they know there is a record they either have a pain patient or they recieved literature and it was recorded as sent to them.

That’s about all we can do I’m afraid.


#3

Many of us have had the same thoughts on awareness. I’m not sure anything can stop the vasectomy juggernaut. The vas juggernaut is to powerful. It goes way beyond making men sterile by their own choice. The way vasectomys are sold is the big problem, and I wouldn’t expect it to change anytime soon. The planet has many huge problem’s, and one of the biggies is overpopulation. Men’s scrotom are easy to access, and in a matter of minutes, at least one less kid won’t be brought into this crowded, problematic world. If it wasn’t for the internet, we would all be lost, and we would think we must be alone, and never find some truth, and/or help.

My wife wrote the board of medicine in our state in regard to how my vasectomy was sold to me. I was sold lies, half the truths, the typical bs, plain and simple.

Earlier this year, we heard news through a local legal channel that the urologist who sold, and performed my vasectomy had his license to practice revoked by the state. I cant say that our letter had anything to do with this action against him, but I would like to think it did. That guy has been playing god for to long. I’ve heard stories about malpractice, wrong diagnosis, etc, about that guy. Of course I hadn’t heard anything before I listened to him, and let him perform his seemingly low risk vasectomy.

My wife wrote that guy letters and sent them certified. She never got a response.

As others have already said, the laws in most countries, including the USA, are set up to protect the doctors, not the patients. More bs :frowning:


#4

I will add onto this and say again, there is no excuse that all men, and their families are not properly informed about the real risks of vasectomy this day and age. Every man deserves the same warning, not some cob job, self serving, deceptive paperwork, and consultation. Everyone’s paperwork, and consultation should be the same, and should be full disclosure.

There is to much stuff the urological community doesn’t know about vasectomy, yet they sell them like they know all about it. A big double standard going on here, and it wrecks many men’s lives, and their families.

Hard to believe this is what’s going on, but this is exactly what’s going on. It’s gone on long enough.


#5

I agree with the juggernaut concept and all of us have felt too small to make a difference at some point. I believe we can change things though. It will take time and various tactics, but I’m tired of doing nothing and seeing more men butchered.


#6

I like the letter idea. How about tracking which doctor caused the PVPS? A database of sorts. Guys looking up info about vasectomies could see if their doc caused others harm.


#7

I used to have a website of sorts that detailed my personal account with vasectomy, and what I had to say about it. I used to get hate messages, flamboyant stupid comments left for me, all kinds of stressful, not helpful rubbish. Unfortunately, some of the comments were left by urologists, and other internet trolls. I couldn’t deal w the stress of maintaining the website, so, after many years of it, I got rid of it. It took no less than one day for a pro vasectomy website to take the web address I was using, and turn it into more pro vasectomy propaganda.

I agree that we need to be proactive, but the juggernaut cannot be stopped. The investments into pro vasectomy category are huge, like mind blowing huge.

I remember asking a highly respected pvps doctor about “why” they don’t know much of crap about vasectomy? They don’t know much of anything that’s undisputable about hormones, blood testies barrier being broken, and on, and on, and on. The answer I got was, there isn’t any funding for those studies. How rediculas is that?


#8

You have to remember that this is to raise awareness and not in any way to smear or impugn doctors and it has to be couched that way. I think it’s the procedure and not the provider. I truly believe that many doctors shut us out of their minds and truly believe it’s a safe operation. If you asked them on a lie detector test they would say it’s safe and they would not be lying even if they had some guys like us. It’s to raise awareness. It is harder to forget about a bad outcome if you are reminded by an outside party. It would require collecting data and would probably require that anonymity be surrendered. I form with a notary mailed or faxed to someone that compiled the database would be good. It would of course not be given out under any circumstance but if a provider decided to go after the site as long as everthing was factual and as objective as possible it would likely be okay.

Again, this is not in anyway punitive or meant to impugn providers. They don’t set out to harm people to make a buck when they get up in the morning.


#9

What was the name of your website? I’ve considered something similar. I’m tempted to either not allow comments or contact, or just post the useful and delete the rest.


#10

@Choohooo, I will PM you the web address I was using.

I’m not here to make a smear campaign toward anyone that actually cares about what’s happening to the 2%ers, or the 10%ers. Even if it was 1%, or a half of a percent that had their life flipped upside down by a vasectomy. I just don’t understand the arrogance, and ignorance that seen to go hand in hand with this subject.

I don’t think anyone gets up on the morning and is thinking, hmmm, who am I going to screw up today? I think they have been getting away with telling men it may take several years to get better, or, the pain is in your head AFTER they sell you on the simple safe procedure BS. That’s not cool!

These people know what really happens to many that have the procedure. I do beleive this very subject gets swept under the rug very tidy amongst the medical community in general. It’s probably easier to refer to many as “pain is in your head”, bunch of crazy’s, wasn’t manly enough to handle the vasectomy, and so on.

We could go a step further here, and it’s probably fair to say, there is a lot of stuff in the medical field that most people are clueless about, including the people that are doing these things. It’s that way with so many things in the modern world.


#11

Hi guys. Dontfixit.org is a good place to start spreading the word. check it out.

I’m in the same boat with everyone here living day by day with the pain with no treatment. So I feel for you guys. good luck and take care


#12

Perhaps if we all contacted various news outlets (i.e. CNN NY Times, BBC, CBC, MSNBC etc.) and agreed to be interviewed and provided data that the AUA themselves provide (i.e. 1-2% with severe pain) then maybe we could start getting somewhere.

I remember seeing an article about a guy with PVPS in the UK, I think it was in the daily mail or something, but the guy described his pain as an ache in his testicle that came and went. We have a lot of members here who have been seriously fucked up by a vas, way more than just an ache in the testes.

If we can get major news outlets to at least do a story or two (perhaps we can get some help from Kevin Hauber) and stir the pot, at least when people google post-vasectomy pain syndrome, a lot more will come up than just the wikipedia article.

Before I got my vas I googled pvps and all I saw was the wikipedia article and this site, which only had say 200 or so registered users. I figured that if 500,000 men per year got vasectomies and 10% were in pain and 1-2% having severe pain, then there would be WAAAAY more users on this site. But, I was wrong. Men don’t wanna talk about this shit, or are embarassed to. I mean, it’s perfectly fine to say to random folks ‘I have lung cancer’ or ‘I have leukemia’ but to say I have chronic genital pain from a vasectomy to random people? It’s inappropriate, or TMI right?

Anyways, if my vasectomist, Dr. Ronald Weiss (yeah the no-scalpel guy in Ottawa who’s done 40,000) had told me that it was about a 1 in 50 chance of having pain, I would have walked out the door. Instead, he told me it was 1 in 10,000 chance of a ‘kind of chronic ache in the testicle, for which a reversal is required.’ Of course, I figured, well, you know, doctors can’t really lie about risks from medical procedures, what with liability issues and all right?

Boy was I wrong. Hell, even if you read this guy’s RateMD’s profile, there are like 10 or 15 guys who have complained of pain. If he’s done 40,000 vasectomies, there should only be 4 PVPS guys… right?

Another thing I just thought of…it’s a long shot though, and I don’t think very highly of the guy anyways, Dr Oz has a submit a topic for a show on his page. Just an idea.

Anyways, I’m willing to be interviewed and have my name in an article. Yeah it sucks and it’s embarassing but c’mon guys it’s time to change this shit. I don’t have an issue with vasectomies continuing, I mean let’s face it, most guys are totally fine, but I want every guy to be informed that there is a real chance of developing chronic pain that can’t really be fixed, and it could be 1, 2, 5, maybe even 10% chance, and it might not happen immediately, and it could be 20 years from now. That’s informed consent. I think that 500,000 number would dwindle to about 5,000 personally.


#13

I agree. I’m not sure it’s malicious. I think a lot of it is ignorance and a real effort to avoid the truth. Docs know. My problems since the vas have been much more than pain, which is often brushed aside as a subjective symptom. I’ve got MRI’s, blood work, lumbar punctures, vestibular tests, all showing very real damage to my body that didn’t exist 3 months before the vasectomy. I think docs and patients alike would benefit from hearing about these consequences. I know many in here feel similarly.


#14

I have absolutely NO problem talking about this crap with any one / stranger at any time.

The problem is you are going up a mainstream practice that is worth millions (billions) in revenue per year. With that kind of clout the 90% of all media being owned by 6 corporations would most likely never allow a truthful piece to be run by people and for the benefit of people / patients.

I am all for trying and if you get ANY bite back from ANY major media I would more than happily volunteer for an interview. I think you might have more luck at the local tv station level but sadly that won’t get quite the coverage you are looking for

good luck though - change in the world starts with someone with enough drive. Unfortunately all my drive is tied up in raising two boys on a restricted diet doing www.naet.com on them every week - for probably 2-3 years.


#15

Just seeing this post, but I’m 100% behind this!! I don’t think it’s the doctors faults, but men need to know this is MUCH more common than that stupid “1 in 5000” stat they all rattle off at you. When we first started down this rabbit hole 3 years ago, I thought I’d keep my peace, let my friends make their decisions about permanent birth control without my butting in. I don’t think that now. Just had a friend and her husband mention they were getting the V, and tried my best to talk her out of it. So many guys just heal up and move on, but if you’re one of those guys who don’t? Your life is ruined!

We live in a small community in Eastern Oregon, our church is roughly 500 members. I know of two other men who suffered severe pain issues with PVPS, and I’ve met several other men/couples who have issues with pain that come and go. It’s not nearly as harmless as everyone says.

Anyway, just wanted to say, it’s a great idea. Somehow men need to know this is far more common, and far more debilitating.


#16

Its great to hear this coming from a wife’s point of view. A lot of us men here don’t even have our partners support and are on our own its a very hard life dealing with this on our own. There has been marriage break ups and all sorts of things which is not good all from a snip which is meant to be so called harmless.


#17

I too would gladly take the time to be interviewed IF anyone would actually be interested in hearing my story in regard to campaigning for awareness of PvP/pvps.

I do see where some folks imply that it’s the poor skill of some urologists that is the root cause of pvp/s. While I do agree that this is likely the case in many cases, I have to point out that the vasectomy procedure itself is riddled with problems that even the most skilled microsurgon cannot evade.

I do agree that vasectomys performed under a microscope, with the client knocked out will have better outcomes, but once again, I don’t think they can evade all the problems when the problem is the procedure itself.

I think some urologists get in hurry for a variety of reasons, and make mistakes when they do vasectomys. They are running on what they were trained to do, and what they have always done. They are just humans, not perfect self proclaimed gods of sorts.

The guy that did my vasectomy said he had done well over 1000, never had a bad outcome, and was telling me about how he had his own refined method. He outright told me he does his different than he was trained to do. He liked to remove more of the vas, etc etc. I didn’t know any better :frowning:

I have read negative reviews left for the best of the best online in regard to ending up with PvP/s. It happens. I have seen reviews disappear over time. Doctors can have them removed for a variety of reasons. There is actually software just for this.


#18

I was recently talking with someone else about what you said in regard to the size of this group. I was talking about it before this was posted.

I think that if we want to encourage others to join this group, we all need to remember to try and keep this place clean as possible.

I know men get very angry when they and up with PvP/s, I’ve been there.

I do believe that the cleaner we keep this place, the more likely others would be to join this group, and/or want to be a part of it.

Just some thoughts


#19

Excellent points.

I really think it would help if this site has a home page kind of like the post tubal syndrome or pudendal hope site.

If we could include information about pvps, with studies linked to and cited, along with a tidbit about how most of us were told no risk or 1 in 10,000, while the AUA say 2% and the NHS say 10%.

Also include information about various symptoms, and information about the anatomy and nerve endings in the scrotum.

We should also include information about various treatment methods and some commentary about pain returning long after being successfully treated.

@victor I would be happy to write a few draft paragraphs re the above. Please let me know if you would like to go ahead with this.

Finally, I think it’s important that all of us, including those who are suffering in the dark and reading this, to contact as many major news outlets as you can in their submit a news tip page.

I’m going to do that now. If enough people submit news tips regarding the same thing, eventually on a slow day they will pay attention.

Please join me.


#20

So far I’ve contacted BBC, Fox News (ugh), CNN, NY Times, and CBC News. We shall see what happens next.