How 15 minutes of surgery turned my life upside down

For the last year, I’ve been working at Mozilla – I just noticed that my 1 year anniversary just passed this month.  Craziness.  Mozilla really is amazing.  I’ll say what everyone says – everyone I’ve met is a genius except for me.  Maybe more amazingly, the people are just amazing human beings.  I feel privileged to be able to work with such great people.

Now the bad news – I had a vasectomy last year in April 2011 and it’s been a nonstop cluster fuck of chronic pain every since.  The clinical term for this is post-vasectomy pain syndrome (PVPS).  Now – normally I don’t think swearing really helps a blog post, but when it gets to the point where you are considering filing for long term disability and the option of selling your house and cashing in your critical health insurance becomes a very real option – then I think “cluster fuck” is a perfectly reasonable thing to say.

The short version of this story is – urological doctors and surgeons grossly misstate the risks for modern vasectomy surgery.   The best available studies for the last 20 years have replicated the results fairly consistently, so I can only conclude that surgeons don’t read their own literature, or worse – they are being disingenuous and risking the safety of patients.

If you’ve thought about getting a vasectomy, go now and see your family doctor and a urologist to see what risks they give you.  I’ll wager they’ll tell you the risks are < 1/1000 or possibly 1/10,000 for any kind of complication.  If you ask the Canadian Urological Association:

The actual risks are actually very high.

  • 15-30% of vasectomy patients will experience chronic pain for up to 8 months.
  • ~2% of patients will have adverse life quality affecting pain
  • 1% of patients will have life long chronic pain
  • There are no preoperative (age, socioeconomic status, race, environmental factors), operative (technique of vasectomy) or postoperative (particularly related to antibody response) factors have been identified to accurately identify patients at risk of PVPS.

Those results have been reproduced in the United States, Britain and Germany with thousands of patients.

This is insane.

I’m 36.  My balls feel like they’re burning 24 hours a day.  7 days a week.  I don’t sit comfortably anymore. Sitting in trains or cars is extremely painful and frankly, I get frustrated enough that I’ve punched holes in walls.

I’ve learned a lot in the last year about PVPS.  How common PVPS is; how a lot of men feel shame in speaking to other people about it; the crazy world of pain medications; and how our medical system doesn’t do some of the things we think it’s supposed to.

I’ll try to make posts weekly and share what I’ve learned and maybe we can fix things in the system.

We deserve a better healthcare system.

edit:  I’ve been asked by several people for some citations and references.  I’ve got lots.  Give me some time to put them up.   Here’s one for you :

Awareness of the risk of chronic pain is particularly relevant when patients wish to have surgery for reasons other than illness or disability, for example, male and female sterilization and some cosmetic surgery operations, which may be performed for aesthetic rather than medical reasons. Chronic pain after vasectomy has been the subject of several studies. These show an incidence of around 15%. A review article in 2003 examined the possible mechanisms in relation to changes that occur after vasectomy. It is disappointing then to find in a recent publication on sterilization the statement: ‘Whether a postvasectomy pain syndrome exists remains controversial’.

Macrae, W. A. (2008). Chronic post-surgical pain: 10 years on. British Journal of Anaesthesia, 101(1), 77–86. doi:10.1093/bja/aen099

Wow.  Response to this has been kind of overwhelming.  Here’s a link to the seminal work on PVPS. It’s from 1992, but the results have been replicated in more recent literature which I’ll post up today.

Significant early post-operative complications occured in 6 patients (3.5%).  Chronic testicular discomfort was present in 56 patents (33%), considered by 26 (15%) to be troublesome but not by the otehr 30 (17%).  Testicular discomfort related to sexual intercourse occurred in 9 cases (5%). Only 3 patients regretted having had the vasectomy because of pain (1.7%).

McMahon, A. J., Buckley, J., Taylor, S., LLOYD, S. N., Deane, R. F., & D, K. (1992). Chronic Testicular Pain following Vasectomy. British Journal of Urology, (69), 188–191.

 

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19 thoughts on “How 15 minutes of surgery turned my life upside down

  1. bhearsum

    You told me about this at the office one day, but I had no idea it was so bad. I don’t know what to say other than I hope it gets better, and thank you for bringing attention to the gross misinformation being put out there.

    Reply
    1. crankycoder Post author

      It’s kind of retarded. I’ve been on 8 different pain meds running the range from NSAIDs, opiates and antidepressants. They either don’t work or if they do – like the antidepressants – the side effects are so bad that they’re useless. SSRIs like Elavil end up managing the pain, but they also knock me out cold for 12 hours at a time.

      Not exactly ideal with a little kids at home.

      Pot works, but again – impossible to work with – and amazingly there’s still social stigma against using it. I’ve learned more than I want to about medical marijuana and how humiliating the entire process can be.

      Reply
  2. Biljana Durickovic

    Victor-Sorry to hear about your demise. I can relate-not with your balls-but with a root canal that went terribly bad. My only course after trying the usual route was chiropractic (Network Spinal Analysis) and craniosacral therapy. I’d be happy to talk to you about what else you might be able to try-there is a lot out there that you can do-just don’t give up. I don’t have your e-mail-so just e-mail Mark and we’ll get in touch.
    Biljana

    Reply
    1. crankycoder Post author

      Thanks Bilijana – I’m starting to look at alternative methods to see what’s out there. Drugs are either ineffective or there are too many side effects for long term use. I’ll get in touch via email.

      Reply
      1. Petra

        Hi,
        I’m a big proponent for Acupuncture. I had great successes using A. for a massive gastritis, migraines, colds. That’s my understanding: blocked energy will flow again. Very useful for all kinds of scar tissue. Yes, craniosacral therapy could very much help too.

        Petra

  3. Brian

    Hey, you could be having a reaction to a foreign body, like the stainless steel clips that are often used to clamp the vas deferens even though they have been clipped and cauterized. Have you asked anyone about it?

    Reply
    1. crankycoder Post author

      I actually had 2 surgeries. My surgeon thought that I was reacting to the vasclip – the ones they used were titanium, not steel. My second surgery involved removing the left vasclip to rectify the problem, but it seems like the real problem was that my body healed to grow dense tissue around the left vasclip. The fibrosis formation almost certain entangled some nerves which caused the pain from my initial vasectomy. I ended up getting a fibrosis again from the second surgery – so the pain has moved, but it’s the same ‘kind’ of pain.

      Reply
  4. Darryl

    It takes a lot of courage to post a story of this nature. While I have personally never, ever seriously considered the procedure, reading about your experiences following the surgery sent a cold chill up my spine. It’s incredible to think how many doctors and physicians downplay the risks involved.

    Perhaps you could explore alternative medicine (e.g. naturopath, herbal remedies) to alleviate some of the pain.

    Thank you for sharing your story. Take care.

    Reply
    1. crankycoder Post author

      The second surgery was a removal of the left titanium vasclip. Recovery was ~7 months, but basically no improvement. Along the way, I ended up getting a very serious hospital acquired infection. More on that later as well.

      Reply
  5. Dave

    I am in the same boat as you – after LOTS of pain filled days of endless research I had a reversal and have gotten my life back afterwards.

    What I find particuarly intersting along my journey was that a large number of people who are willing to talk about this and figure out what to do (since majority of docs are clueless how to treat PVPS) are technical people (engineers, programmers, fabricators, etc). Leads me to believe that there is a trend of an engineering type of mind person wants to figure out the root cause of the pain and address that instead of ‘managing’ the pain.

    It makes me cringe to think of the countless victims who are not of this type of mindset who blindly follow what there doctors tell them and feel ashamed to talk about this openly with anyone.

    Reply
  6. Bill

    I congratulate you. I have yet to find an outlet. Blogging doesn’t some natural to me, so I haven’t tried this yet. Hope you get better.

    Hope we all get better.

    Michigan Bill

    Reply
  7. Brandon

    So it sounds like you’re dealing with nerve damage. I imagine you’ve already done some research on the nerve block – but according to Dr. Werthman (the guy that did my reversal) nerve blocks have been reasonably affective in dealing with nerve damage, while reversals really have no affect.

    Reply
  8. R

    To anyone out there considering vasectomy I urge you to ask lots of questions. This pain is real and destroys your life. You can be the statistic and then it’s to late. Your friends will tell you that theirs was fine until you start having problems, then they start to admit to having issues and regret having it done in the first place. The doctors lie, mine said that he never even heard of longterm pain, theres no such thing. It is listed in his vasectomy brochure and consent form as a possible complication. I guess he never read them. Follow your gut if you are having second thoughts about the procedure DON’T DO IT.

    Reply
  9. Jason

    Saw your post on the Yahoo PVPS group. I’m curious if your issue are caused from nerve damage or sperm Antibodies forming. My issues are more related to Antibodies causing Vas to “Flame up”. I’ve been on T now for about 4 weeks and already seeing improvement. My theory is: By supplementing my body with T it will shut down the testes, thus eliminating sperm production and reducing antibodies. Here is an awareness video I made on youtube about two months back to spread the word. I’ll probably do an update soon. Good luck!

    Reply
  10. Peter

    For guys thinking of vasectomy…here’s some honest information. Most guys do not have problems with their vasectomy, however there are definitely some that do. More importantly there are many, many physical changes that will occur and it will really be up to your body to decide whether they will cause pain or not.
    First, the pressure within the epididymis will increase on the testicular side, even with an open ended vasectomy. This is why guys get epididymitis after vasectomy even when it is open ended allowing sperm to flow out – not because of infection.
    Second, 50-70% will form antisperm antibodies. Now this again will not effect most men however it does create an unnecessary immune response which is never healthy. You can hope that it will not mess with you.
    Third, about 66% of men get vasitis which is a thickening of the spermatic cord (distal end of the vasectomy site). Again this is usually benign however if can become chronically inflammed and cause radiating pain to your groin, abdomen and lower back.
    Fourth men develop cysts and lesions on their epididymis due to pressure and such over time. When men have gone for reversals this has been a common finding amongst men and their vasectomies.
    What I am trying to inform guys about is that even if you’re lucky and this surgery causes no pain, it is still not healthy!! It is a surgery which will cause many physical changes that are not good and it is just a matter of luck if you body responds to these changes in a positive or negative way. There are only 2 surgeries that I can think of that humans go through that aren’t done to heal the body and that is sterilizations (men and women) and plastic surgery. Sterilization should not be promoted..it should only be performed if there are no other alternatives to birth control. It does not HEAL anything but destroys healthy tissue.
    Also for my 4 points above, feel free to google search any of this information for references on the internet from medical journals.

    Reply
  11. numbnuts

    I had a vasecotomy in 2011…am currently on second suspected case of prostatitis, right epididymis is alway swollen and hard and this low dull radiating ache always reminds me that something isn’t right, ….it comes and goes, it’s weird I cant explain it. I’ve been to doctors, they look at you adn go…hmmmmm…..more pills…ya that should it…oh and stick ice on your nuts when it gets bad….thanks for that doc….oh…there is no association between vasectomy and chronic prostatitis…I guess we are all making this up.

    Reply
  12. anon

    I have not been able to sit in comfort for 38 years since the worst decision of my life (vasectomy) My op. was done by a fpa vasectomy unit, who sold me this with higher sales pressure than any car salesman. When I returned with chronic pain they said that I was the only man who had ever complained. I am worse now I`m older, not much fun to look forward to.

    Reply

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