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.