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PVPS- who screwed up and what did they do wrong?


#1

Vasectomy – what exactly did they do and what was done wrong?

As the author of these posts I have taken the liberty with my very first article to change the agenda of what I offered. This first piece is on the vasectomy itself and questions I am frequently asked. Again these are my opinions, based on experience and my own thoughts. Take everything I say and what everyone says, yes even the experts, with a grain of salt. I may be wrong and am always open to being corrected or learning other’s thoughts.

Vasectomy technique. First of all vasectomies are a simple surgery designed to disrupt the flow of sperm through the vas. We all do vasectomies using the same basic concepts, but often in our own unique way. The technique we use is based on how we were taught, what works for us over the years and anything new we learned along the way. No one has any secret magic technique that is better than anyone else. A standard vasectomy involves cutting, clipping, tying, cauterizing or excising a segment of vas - and usually a combination of any or all the above. Sometimes this is done through a single midline incision and sometimes through small incisions or defects created on either side. Many use the no scalpel technique or variations of that, while there are still some that prefer small incisions. The key point is that there is no hard and fast absolute technique, and no specific technique that one can say causes PVPS or doesn’t.

Because I do vasectomy reversals daily and often for PVPS, many men are rightfully worried that additional surgery will exacerbate the problem. They often ask how will my reversal be different from the vas and why will the reversal not make things worse. My answer is that there is a world of difference. A vasectomy is a quick, in and out, seek and destroy, shock and awe type of a focus traumatic procedure. Get in - find the vas - do the damage - get out and move on to the next patient. It is a destructive procedure that causes instant obstruction of a system not designed to be obstructed. The reversal is the exact opposite. It is a very precise, delicate, microsurgical reconstruction that takes several hours under a high-power surgical microscope. The goal of a correctly perform reversal is to reconnect the ends of the vas, restore the flow, all while doing the absolute least trauma to the delicate tissues of and around the vas.

A lot of men with PVPS want to know what was done wrong at the time of their vasectomy to cause such horrible and debilitating pain. In our world of absolute cause and effects, it only makes sense that something had to have been done wrong. Clearly, it seems, there must be someone or something to blame and hold accountable for this horrible pain and all the devastating consequences. Unfortunately that’s not the case. Though we are always looking for clues that might explain who’s at risk, or what we can do to minimize the chances, the likelihood of developing this kind of destructive pain is still very rare. Most urologists I have talked to have never had a patient with severe PVPS, that they can recall, that had this kind of pain that did not resolve soon and respond to normal anti-inflammatory treatments. I really don’t think that anything specific was done unique to the men with this pain different from the many thousands of men in their practices who didn’t get the horrible pain. When I talk with my colleague, the way too smart Dr. Peter Burrows, though we have never really checked this through our database, it seems that the majority of men with PVPS have several metal clips at the vasectomy site. As much as I’d like to blame the absolute occlusion of these clips, I also know that probably hundreds of thousands of vasectomies are performed using these clips without the subsequent pain. The other common finding is that the vasectomy is often done way down low in the vas. My thought is that by doing the vasectomy down low, there is less vas to allow for the build up of pressure, and so the pressure builds up and back into the delicate tubules of the epididymis. When a vasectomy is performed higher up away from the testicles, there is more vas to handle and dissipate the pressure that builds up.

I know of one very bright PVPS expert (that I have tremendous respect for) who believes that there is an immunological response that plays a role, but as of this moment in my heart I am not sure that is right. Of course, if a treatment works, then that is great and I will add that to my list of possible causes and treatment choices. We learn new things every day and so this is one area where I may be totally wrong. We see many men with antibodies that we have shown play zero role in subsequent fertility and seem to have no clinical signs of symptoms of the antibody response.

As I will discuss in a later piece expanding on my thoughts as to what causes PVPS, there are five basic findings that I usually see in men with this pain. Almost all the patients had at least one and many a combination or all of these findings. These include

  1. Significant buildup of fluid under pressure, often on one or both sides
  2. Sperm granuloma, very small to large
  3. Dense extensive scarring at the vasectomy site (dramatically more than I usually see every day with my reversals for fertility)
  4. Metal clips as previously discussed (not sure of the cause and effect but they are often there)
  5. Vasectomy low in the vas

Of course, because of the nature of medicine, I can almost guarantee you that my next reversal patient with PVPS will have absolutely none of these.

So in summary, I really don’t think there’s anything specific that a doctor does at the time of vasectomy that we can consistently predict will cause pain. Rather I think it’s that person’s unique healing response to the technique of the vasectomy that’s responsible for the pain. The good news is that for the vast majority of men with PVPS, there are a variety of conservative and invasive treatments that are usually effective in dramatically reducing or eliminating the pain. If there are any of the many brilliant urologists that have an opinion, I would love to hear them.


#2

Thank you Dr. Marks.
I have a question, I understand the seek and destroy method, but has there ever been a blockage from within the vas procedure instead of just cutting the vas? Maybe injecting some sort of material into the site to block the flow of sperm instead of cutting and creating all sorts of possible outcomes of health problems? This way you would know that it is blockage or back up is the problem and then there is just the removal process of the blockage no micro surgery and people are put back together more quickly and safely?
Just curious if this approach has ever been attempted?

Again thank you for expert sharing of knowledge


#3

J, I’ve actually read of two other methods of male birth control that I found pretty interesting. One is, as you suggested, simply making a small incision in the vas deferen tube and inserting a sponge type object, effectively blocking off the flow of sperm, similar to a vasectomy. The goal here is to make it easy to remove the object later on, if you so chose, with only a small incision needed. I read that a doctor out in British Columbia has began using this practice, so it must have already got the go-ahead up here in Canada.

The other method I read about which sounds interesting is called RISUG (Reversible Inhibition of Sperm Under Guidance or Vasalgel in the U.S). They’re running trials right now in India, but the basic premise is they use a needle to insert a non-toxic gel into each vas deferen tube and as the sperm pass by the gel chemically incapacitates the sperm. It is showing almost 100% effective in trials and the best part is if you want it removed later on there is another solution that can be injected that washes away the gel. There is hope that they’ll bring this State side by 2015, but the main sticking point is that American pharma companies don’t know how to make money off this, since it’s more of a cheap one shot deal, so they may not support it.


#4

These all are great ideas and fit with the same theory of somehow obstructing the vas and flow of sperm. There is a new technique developed by Dr. Joel Marmar where no segment is excised but instead the tube within the vas where the sperm travel is damaged by cautery. I ma not sure about success and failure rates, but it seems easier to have done with less trauma.

Here’s my concerns with this and the other two ideas for using an insertable sponge or removable gel. And this is the big hurdle. These ideas may work and be very effective, but what is the failure rate? This has destroyed many a good idea that after going on the market we then started to see a rising rate of failures and bam, the product is no more and there are lots of babies that were surprises. Failure with vasectomy is a huge consequence – a child that needs to be raised for life.

Even a standard well done correctly preformed vasectomy with segment removed and the ends cauterized and tissue interposed still has a has a one in 2000 failure rate. Failure here is sperm returning to the ejaculate and so these men are fertile again. Most often these men find out they had a spontaneous reversal when their wives or other female partner announces she is pregnant. This obviously leads to lots of interesting conversations. And this spontaneous reversal can happen right away or many many years later. And for men not wanting to father children, this is a big deal.

Remember that 95% of all men that have a vasectomy do NOT want any more children, ever, the rest of their lives. So first and foremost whatever vasectomy technique is used has to have the very best success it can have. No one in our society will tolerate a higher failure rate to save a few bucks or to make it more easily reversed later on. And to me these all sound like they would also still cause PVPS, plus now you have to deal with a foreign body in the vas which will cause its own problems. In foreign countries where they don’t get sued for everything it is probably fine.

And remember that in the early phases of testing, these are paid for buy the company that is hoping to make millions of the sales, so they are often extremely biased, many times ignoring bad consequences and sometimes downright dishonest.

What needs to happen is multiple centers that have nothing to gain must test the products and then monitor of unexpected consequences- right away, short term and long term.

So for now I am also excited about these but will not believe they are the magic miracle until it they tested as noted above with the most important evaluation , the test of time.


#5

Dr. Marks, I’m glad you covered the question about the risk of a reversal making things worse. Your answer makes sense and is comforting. I have to say, I’ve thought of a reversal many times but I am petrified of making things worse. Do you have stats on that? What % of your reversal patients claim that the surgery increased their chronic pain or introduced new chronic pain? And, what about success rates? Finally, do you agree that doing a reversal after three years post-vasectomy is a more complicated procedure with lower success rates?


#6

First our success rates are based on my memory. In general I think the vast majority, in the range of 90 to 95% tell me that they had total resolution or dramatic reduction in pain. There are the occasional patients where they get better, often with almost total resolution and then the pain comes back. Not sure mechanism of this as they usually are putting out good sperm counts so they vas repairs are open. How quickly or slowly men feel better varies from person to person. I have had many men 3 to 7 years or more with great results of their PVPS after reversal. I do not recall a single patient where I made them worse. If Dr Burrows and I didn’t truly feel that I was helping and making a difference We wouldn’t be doing reversals for PVPS. Hope this answers your questions.


#7

It does! Thanks for taking the time to answer. I’m glad that you and Dr. Burrows are out there doing what you do.


#8

Dr. Marks thanks for your article and for joining the forum.


#9

Dr. Marks - thanks for all you’re doing! I enjoyed my consult with you in 2009 about 2-1/2 years post-reversal for pain when I thought I was suffering a relapse. Turned out OK for me, but I was pleased to know you were there in case I needed you.

Do you think there are signs or conditions that would indicate a man might be a higher-than-average risk of developing PVPS. My reversal urologist at the Cleveland Clinic mentioned in passing several things he’s found men with PVP seem to have in common, but admitted they were anecdotal and would need a lot more study.

It seems to me that high sperm counts and prior injuries to the region (e.g. hernia) would be logical risk factors. Also, if one buys into the autoimmune effect, people with chronic allergies might be higher risk. In my case, I had all three of these. Coincidence? Perhaps. I think research would be interesting, and even if there’s a statistical relation, I’m not sure we could prove causality.

Scott


Predispositions - Back problems? Hypertonic pelvic floor? Flat feet? AID's?
#10

For me it seems that whenever I think I have found a clue that I think “ahaa, this is what would predict PVPS” I see a dozen men having reversals for fertility who have the very same predictors and have had zero pain. Just the same, I then have a run of men with PVPS who are having their reversal and have none of the predictors.


#11

Dear all,
We really believe that there is a lot that we do not know about vasectomy and the cause of PVPS. If it were a simple obstruction issue, then all men who have a vasectomy would have pain - but this is not the case. We also see PVPS in men who have had a vasectomy by some of the premier vasectomy specialists in the world (have done over 10,000 or more) and also in only a few men by urologists who have just done a few vasectomies. So why does is not seem not correlate to the technique or experience of the surgeon? We need some real scientific evidence and a scientific explanation of what is going on.

We recently completed a landmark study on the neuro-anatomy and pathology of the nerve structure & anatomy in the spermatic cord that was published in the Journal of Urology in July 2013 (feel free to take a look at the following webpage for details: http://www.mypur.org/#!chronic-testicular-pain/c4oy

This is the first paper that identifies a structural difference (Wallerian degeneration) in the nerve fibers in men who have PVPS versus men who do not (healthy controls). We think that this is what explain why some men get PVPS and others do not. If these structural changes in the nerves happened to be there even before the vasectomy was done - this may explain PVPS as a two-hit theory - there are a few men out there with some type of pre-existing nerve abnormality and then some type of surgery is done in the area - vasectomy, hernia repair, trauma, etc and then these nerves respond abnormally and lead to chronic pain. We know from the neurology literature that wallerian degeneration can cause chronic pain in peripheral nerves in the hand and leg - so we think that what is going on is the same process - except in the groin & testicle.

This is the basis of our treatment algorithms and so far we have been able to help a number of men. We tend to tailor the type of treatment based on the regionalization of the pain (please see our pain classification system on our website). We really believe that the treatment needs to tailored to the symptoms and not every PVPS pt should get a reversal. If reversal was the only option - then why are we doing vasectomies ???

There has got to be more to this puzzle and I do believe that we are getting closer to the truth.
We are trying to embark on a new initiative to get more scientific data. We are raiding funds to do a genetic study to prospectively compare men with PVPS to healthy controls to assess if there could be any genetic point-translocations that could explain the anatomic wallerian degeneration we found on our prior study. We are attempting to do a “Drive for Men’s Health” Campaign to try to raise funds for this very expensive genetic study (few thousand dollars for each patient). We would greatly appreciate the support. Please take a look at the campaign website at:


The campaign will formally begin on April 14th, 2014 - we need your help,
Thanks for letting us be part of this forum
Sijo Parekattil, M.D.
The PUR Clinic, Clermont, FL.


#12

I will bump this post up for new guys on forum that havent seen this, very interesting have a read what Dr’s say on first few posts here.


#13

I admire Dr. Marks and Dr. Parekatill. They may not be perfect, but they’re are strong allies and helping in the fight.


#14

It’s funny but I feel like my problem is caused by the exact opposite problem. While I was clipped high up on the left I feel like it was too high up. That area right on the inguinal ring at the base of the penis get’s pinched and pulled while sitting and when you get erections. Also, I can feel long bands of scar tissue in the scrotal skin that seems to be where a lot of my pain originates.


#15

Hi Guys, I just found this Forum this morning. I had no idea there was an outlet like this on the Internet .I have felt so alone on this urologic Path! Not that I’m happy that others have had similar problems, but I’m glad to have an outlet for once in 16 years. My heart goes out to all of you and especially to those guys that have said they may end their life due to the pain, I was at that point the 1st yr.Please please reconsider, we all must take it one day at a time.
After reading some of your stories, I was so sad and could not comprehend the pain that some of you guys have gone through and are still going through to this day.
I hope it’s OK that I share with you my story of the first year and a half.

I will try to be as brief as possible. My nightmare started over 16 years ago. I woke up one morning and it felt like a butcher knife was being thrust into my perineum! The pain was unbelievable, I went to my MD ASAP. Needless to say this began a year and a half wild goose chase of what the hell was wrong with me. After the knifing pain subsided after a few weeks, then I felt like I was being clawed to death in my perineum!it was terrible I thought it couldn’t get worse than this. Well this continued for three months, then oh joy I woke up to a non-stop pinching pain deep in my right testicle! I seriously wanted to die at this point!
My pain kept shifting and increasing, by then I was up to 18 Vicodin a day, little did I know that that was very dangerous, but I was in so much pain!

Luckily I found the Chief of Staff of urology at OHSU in Portland Oregon, where I lived. Thank God he was a preferred specialist with my insurance plan.
The only relief I had was pain pills and sitting in the hot bathtub.
It took my insurance company 6 months to approve me for a vasectomy reversal.

I was calling in sick throughout the summer and took all of my four weeks vacation. I used to be a international flight attendant for a major Airline. I truly loved my job !
This one morning I was packed and ready to go on a trip, I was in reduced pain period for a few weeks so I decided to do a trip. I was ready to walk out the door and drive to the airport. The pain hit me so bad I fell on the kitchen floor!for the first time in my 15 years I called in sick less than one hour before report time.

The next morning I got a frantic call from a friend to turn on my TV, just in time to see a plane hit one of the towers in NYC,IT WAS 9/11!!!I totally freaked out and started shaking I was supposed to fly that morning into Ronald Ragan DC.
That was the The end of my career as a flight attendant, I never went back to work, Do to the pain and opioids .
I did get relief slowly from the vas- reversal but it took at least two years to really start to calm down.
Though I had the Vasectomy reversal, I was still dealing with Perineal pain.
I saw several more doctor one in San Francisco, he was at a loss of what the problem was, so he sent me to Seattle, to see the Chief of Staff of urology at the University of Washington.
Within 30 minutes of talking to this doctor he pretty much knew what was wrong with me .I went back-and-forth from Portland To Seattle to see this doctor to get a complete diagnosis.
My final surgery was a hydrodistention cystoscopy .They had to go through the urethra with a small camera to take pictures of my bladder Yeah!The aftermath of that surgery was a freaking nightmare, when I went to use the bathroom, shall I say the color RED!!!
Well the final diagnosis was I have interstitial cystitis, a very rare bladder disease only10% of the patients are male.NO CURE!
So to date, I have learned to cope and live with these two conditions. I call my bathtub my office I take 4 to 5 hot baths a day, and I’m up with pain all night at least two times a week .
I have had relief in the past for both conditions by doing acupuncture, I also take many homeopathic Products I wear a 50 MCG Fentanyl pain patch, and use oxycodone for breakthrough pain.
I’m sorry for writing such a long story but this is the first time I have been able to vent to men that could understand at least half of my problem, after living with it for 16 years!
My thoughts and prayers are with all of you, try to make it a great day for yourself!!!
Sincerely Charlie


#16

I don’t understand, did you have issues with your vasectomy? When did your problems start with respect to your vasectomy? You don’t talk about your vasectomy at all and jump right to the reversal and you also talk about interstitial cystitis. Why the reversal?


#17

My other question is how do you sustain yourself? Are you on disability?


#18

I mentioned I started having a pinching pain deep in right testicle. I’ve had a vasectomy approximately 10 years prior. So I went to my regular M.D. you put me on Vicodone then I go see the original surgeon who did the Vas. He he was a trip he put me on Valium, he thought it was in my head . So eventually I found the cheapest staff of urology for OHSU, after many appointments and months he decides to do a vasectomy reversal . But then I have to wait another six months to get approval from my insurance company now and September .
I had the reversal and the pain slowly subsided but it took two years . Probably like most men I cannot tell where the pain is coming from except it’s in my right testicle, it’s maddening as I’m sure you are aware of .


#19

Yes Mike, I am long term disability from my employer .Plus in the fall of 2010 Social security deemed my interstitial cystitis a debilitating disease! So Part of my income comes from my employer disability package and part comes from social Security disability.
I am very grateful for the airline I worked with, and Social Security.


#20

I will add that 85% of my pain at this point is testicular.