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


#21

I can’t help but elaborate more on my thoughts on what I said earlier. This urologist i spoke of was doing something that is safer for him, and not safer for me, or anyone else, from a legal stand point.

The way I’ve always understood it, urologists are more worried about getting sued for you still making a baby after your vasectomy via natural recanalization.

Taking out more, cutting lower, higher, I think this stuff should be more regulated. Find the best way, and do them all that way. This self regulating system that i have personally witnessed seems foolish to me.

I’ve had two reversals fail. Hard to believe recanalization even happens, lol, but apparently it does happen.


#22

I’m more and more amazed at how many side affects there are - many of my friends/friend’s husbands didn’t get the severe PVPS, but they do have intermittent “bad days”, as they call them.


#23

As a newbie to the board, I second this wholeheartedly, because you all have already created a safe, intelligent, helpful forum! I’m so appreciative that this is an ACTIVE board (so many on the Internet are years old and no longer active), and I’m so impressed with how helpful and kind everyone is! It definitely led me/us to stick around, and I plan on gleaning lots of advice from you all for our situation. :slight_smile: You’re all doing a stand-up job, and you’re HELPING people. Keep it up!

Jenn


#24

Yes and of the 5 people that told me it was safe and no pain i have gone back to them and showed them how i have ended up. Of the 5 now they have changed their story 1 has ED, another has painful sex, another has lumps in testicles that are sore, another has prostate issues. If i was told truth from start i wouldn’t be on this forum.


#25

@vasregret, @slowrain, Many years ago, I too wanted to get the word out, and campaign for awareness, etc, etc. I did just that.

Of course, I did things my way, and I would say I failed miserably at getting any sort of momentum. I know of many others that did similar things, various tactics, etc, etc. It just doesn’t seem anyone has ever been able to put a scratch, or dent in changing anything far as the rules that ALL urologists have to govern themselves under, be in compliance with, etc, far as true informed consent goes.

I’m sure that what many have done has saved, or spared many, but I wouldn’t consider that a real scratch, or dent in the vast number of men that are truely uninformed of the risk of chronic pain post vasectomy, vasectomy reversal, vasectomy anything before they electively make an informed decision to have the procedure done to themselves.

I’m not writing anyone, but whatever I can do to assist you, let me know via PM.

Here’s a couple others to reach out to that do get a lot of exposure online.

Dr Mercola
Naturalnews.com (healthranger)


#26

@MikeO mentioned this idea previously, and I think he’s on the right track.

If we could turn this into, or create a PVPS “foundation” with non-profit/charitable status, we could definitely start spreading the word and have some clout, instead of being seen as a ‘fringe’ website of men ‘suffering from pain in their heads’ or what’s that thing that Dr. Turek said ‘male disfigurement syndrome’ WTF!?

Keep in mind that the pudendalhope site is actually a registered charity. We could do that too.

If we created a registry of members who have suffered pain, with the name of the uro/dr who performed the vas, along with the PVPS numbers they were quoted pre-vas, then, as you mentioned previously, send a letter to said uro/dr with the AUA or CUA guidelines (CUA guidelines are 1-14% chance of chronic pain FYI) alerting them that they are violating the CUA/AUA guidelines (based on location) and that they have a PVPS patient who has registered with the PVPS foundation, along with a little tidbit about how the PVPS foundation is keeping a database of PVPS sufferers, along with urologists who are not in compliance with CUA/AUA guidelines, I think we may start rattling some vasectomists.

Then, imagine if uro’s who got a bunch of these letters started thinking, oh crap, maybe I’d better stick to the AUA/CUA guidelines and actually inform patients! We’d probably start making a difference.

Sure, it won’t fix us guys who are already broken, but we can possibly prevent further harm.

Think about it, if you were actually told that there was a 1-2% chance of severe chronic pain negatively affecting your quality of life (AUA) or a 1-14% chance of chronic scrotal pain (CUA), I think only 50% of guys would go through with it.

I know that if my vasectomist, Dr. Ronald Weiss in Ottawa had told me there was a 1-2% chance of severe pain (or 1 in 50 chance) instead of the 1 in 10,000 chance of a chronic ache in the testicle, for which a reversal is required, I would have said thanks but no thanks, see you later and I would not be here today. But here I am.

Rant over.


#28

“Fox News (ugh)”

I find this kind of ironic because a place like Fox is more likely to give you a fair hearing on an issue like vasectomy pain that is politically loaded in a way that would make more progressive news organizations tend to marinalize our suffering. What’s few ruined men’s lives with all that women go through? It’s for the greater good blah blah. Just look at that pompous, self righteous a$$hat John Stack with his third world sterilization campaign in the name of helping women, reducing population etc. etc. blah blah.


#29

Actually that’s a good point. Never thought of it like that.


#30

I think a foundation is a fantastic idea. It would certainly help with organization and credibility.


#31

Hey, so I had some thoughts as I was taking a shower at midnight after FINALLY getting our 1 year old to sleep. The shower is where my brain regains some of those cells lost during the day. Haha!

Getting the word out…

Go viral. I wonder if there is a chance, while the news outlets are busy ignoring the issue, to make something go viral! If a cat falling off a sofa can get millions of views, surely something like this could get 1000’s, if done properly!

Facebook/Instagram/Youtube video
~A simple, 2 minute cue card type video of someone who wants to summarize their experience by siletnly flipping cards
~A voice over video that briefly explains the issue of PVPS and then reads a few quotes from men/spouses who’ve suffered through this, possibly with some pictures of them w/ their families, representing what was lost
~A catchy infographic, animated or still, that gathers statistics and combines them in a way that shows the numbers of the vasectomy, PVPS and treatment methods/success rates.

Anything done of this sort would need to be top-notch with a good videographer, editor, writer, but I think it could be done! Imagine if everyone on THIS forum shared it - that’s thousands of people in the initial posting that are seeing it, thousands. And if it takes off, we all know that that happens in the online world! It would be good, if one were to take that step, to definitely have some source to point people to; this forum, a website, a foundation. Something to give credibility AND a place for people to seek resources.

My daughter was born with a rare birth defect, and through my online research into her condition, I found a website created by an British gentleman who was living with the same condition as an adult. He started a simple website that exists first to merely connect families to each other. He provided a platform that allowed parents to connect, and he began to include resources…doctor’s, hospitals, experts, news articles, research. It was very humble at first, but it has exploded. That man, who is a ship builder turned jeweler in the UK recently helped form the very first world-wide survey on the birth defect, got the backing of a respected doctor at an established teaching/research hospital, that went out to THOUSANDS of people and the results of his survey will l be presented with the most current research at the top conference in the world for this condition. He is getting noticed by top doctors in the field, he’s on first name basis with THE top doctor the guru everyone wishes was treating their child. ONE man who started a website. And it wasn’t any fancy! The guy had typos everywhere, it wasn’t polished, but he has just committed to making it better and he is making a worldwide impact on families both through the survey just because he was that person who said “We need a place to gather all of this information and make it available to parents”. It’s really, really amazing.

I don’t have the resources to do anything like this, though I’d help with writing if needed! And, I’m not up to speed on which social media platform is the

My second idea - BLOGS

My other idea was to get this out via a popular blog. I know in my circle, blog posts are at least half of the articles/outside sources material that pops up in my facebook feed. Granted, women I think are more compatible with this sort of communication, in general, but all my mom friends have favorite blogs, and often blog posts will be shared, if the reader likes it, from a blog site they’ve never actually heard of!

If anyone could reach out to a popular blog - men’s or women’s, and get their story out, and see what happens. Again, if the right person/people think it’s interesting, it could fly around the internet so quickly.
In this case also, it would need to be written more as an editorial, or in story-type style. Any viral blogpost or video I’ve seen connects with the emotions of the viewer in some way. The most common of course is humor, but any emotion can be sort of targeted and drawn out by the writer to elicit the appropriate response out of the reader. Compassion, disgust, astonishment…these all have great “viral” potential!

In both the cases of a Facebook/Instagram platform OR a blogpost on a well-known blog, I do agree with other posters that there needs to be some sort of home-base, whether that is a foundation, website, public Facebook Page or even this forum. Viewers/readers need to be able to view the content and GO somewhere. Maybe there could be a prompt for the viewer/reader to share their story, a prompt to “find out more” from other PVPS sufferers, an offer for PVPS sufferers to find resources (doctor’s, hospitals, successful treatment options)

I feel kind of bad for offering ideas and not volunteering to help, but I really can’t do much. I don’t have the tech savvy or networking/people connections to the kickstart for any of this. And also, to be honest, we’ve got 7 kids ages 11 to 1, we homeschool and I’m basically doing it as a single parent. Not completely, but close. There are too many variables in our lives right now and I’m not very reliable, as much as I want to be! BUT, I will help write, bounce ideas around, anything!

One last thought - use small outlets too, letter’s to the editor, local news stations, Reach out to the political realm - letters to the Surgeon General. Contact websites like SF Globe (online newspaper, of sorts) and ask to run a story.

Okay, that’s all for now! Sorry that got long! :slight_smile:

Jenn


#32

This thread must not die …
What I have done …?

  1. I have created my own website www.stopstarilisation.dk (stop vasectomy) and shared the website on the web.
  2. I have written to the Danish Health Minister
  3. Sending monthly links to the major newspapers in Denmark
  4. I am writing to all media who have done articles on sterilization without mentioning side effects and PVPS
  5. Given the input to an article that is published to all doctors in Denmark: Conclusions:
    "PVPS is a condition which at worst can disabling the patient.
    Limited knowledge of the area and lack of effective treatment makes patients often be misdiagnosed and mistreated.
    More knowledge and recognition of the syndrome is needed to find these patients and provide proper treatment.
    Treatment is possible, but have to be given to the individual patient and standardization is not possible.
    The US American Urological Association (AUA) estimates that 1-2% of vasectomy patients will experience chronic pain so much that it affects the quality of life negatively and requires medical treatment "
    What to come:
  6. Study of the prevalence of PVPS in Denmark through adverts in the Danish newspapers. Maybe together with a clinic that verbal has agreed such a study
  7. Common lawsuit

#33

Excellent ideas and work Daneinpain. I think this is a model for all of us.

Question for the folks in the USA, what about trying to get vasectomies removed from insurance coverage (like reversals are)?


#34

That will never happen. Are you aware of the level of corruption, and abuse within the medical system here in the USA? Boy, I could tell some stories.

I paid 200 for my verbal consultation. Paid another 500~ for the vasectomy. The urologist billed my insurance another 500~ at minimum.

It’s greed, and corruption at its finest. This kind of stuff has been going on since the dark ages. Things haven’t changed much since then.

I am quite certain 1000’s would loose their jobs if urologists vasectomy numbers were cut in half.


#35

My sixth urologist (woman who focuses on pelvic floor and refuses to perform vasectomies) told me that if you took vasectomies away from urology, no one would go into the field. She said vasectomies are what make urology profitable and worth dealing with all the other crap.


#36

Insurance companies probably benefit greatly from vasectomies. Once a man is sterile he can no longer create babies. I’m sure it’s driven by profit and is mathematical. Vasectomies would still be cheap as they take very little training in to perform and no general anesthesia is required.


#37

I hope tricare takes a long look at my insurance claims from the last two years and reconsiders. 7 MRI’s, 2 CT’s, lumbar puncture, epidural blood patch, vestibular testing, cognitive testing, 43 specialists, 4 trips to the ER, 6 prescriptions, 70+ blood tests, 6 PT’s, 3 psychologists, and an upcoming week visit to the Mayo in Rochester. Up until 4/24/15 the only claim on my insurance was the birth of my daughter.

I’d say I’ve more than offset that cost.


#38

I was under the impression that insurance companies only provide coverage for what they are required to. PVPS can be very expensive as Choohoo points out. I wonder if the insurance companies would gladly remove vasectomy coverage if they could.


#39

Up here in Ontario we have government funded health insurance called OHIP (Ontario Health Insurance Plan), where basically any resident of Ontario is automatically covered. Show your health card at the door and it’s all ‘free.’ Obviously our tax dollars fund it.

OHIP pays for vasectomies and pays for reversals for pain. My reversal is going to be covered 100%, no questions asked.

I think with all of the guys up here having reversals for pain, and the numerous doctors appointments that PVPS guys go to, I think eventually OHIP will have a good hard look at covering vasectomies, especially in light of the CUA’s 1-14% risk of chronic pain in their guidelines.

I can see an insurance company not giving a shit when there’s a co-pay or limit to how much they’ll pay, but our government funded healthcare is essentially an all you can eat buffet.

I could have surgery after surgery after surgery at precisely $0 out of pocket, and if I wanted to, I could go to the ER every damn day complaining about my nuts hurting, followed up by a weekly doctor’s appointment, yada yada, you get the idea, all at $0 out of pocket. Considering how common PVPS is, and Dr. Jarvi runs a urology pain clinic that specializes in PVPS, eventually, maybe not in my lifetime, but eventually the beancounters will take a good hard look at vasectomies and realize that the $395 they pay a physician to perform a vasectomy is not worth the potentially tens of thousands of dollars in treatment costs for a potential PVPS case.


#40

I totally agree with this. It’s way more likely to happen that way, than many other ideas I’ve heard. The same can be said about the NHS. They will likely get tired of the financial strain PvP/s puts on their pocketbook eventually.


#41

Perhaps you could make the argument that Jarvi is better prepared to treat PVPS than anyone else in the world. He doesn’t have sell anything. Just do his job and do it well because big brother is watching.