Testicular Neuralgia

[This post is part of my Medical Conditions Series.]

It feels like my left testicle is being squeezed and yanked out of place. (And that is not an entirely inaccurate description of what has actually happened.) And yes, it feels just as miserble as it sounds. The pain varies in intensity, but it never goes away or even dips below excruxiating. What started as an occasional mild discomfort after a surgery I had when I was 10 gradually grew over the years into an intense, disabling neuralgia. I’ve had various surgeries over the years in an attempt to deal with it, and each helped a bit for a little while, but then the pain would return even worse than before. Our best guess is that a nerve (or several) got caught in some scar tissue and is getting pinched increasingly harder as the scar tissue hardens over time. Doctors are somewhat reluctant to try more surgery for fear of creating more scar tissue; I am considerably more reluctant than the doctors at this point.

The pain makes any sort of activity difficult. Lying down and resting is tolerable. I can sit for a few minutes without difficulty, but after 30 min the pain will ramp up and will continue getting worse until I lie down and rest. Standing is worse–anything longer than 5 minutes will ramp the pain. I can walk (more like limp) short distances, but anything longer than a block will be slow, painful, and exhausting. Around the house, I’ll shuffle from room to room; outside the house, I generally use a wheelchair. Stairs are very difficult and I have to take them slowly. Running and jumping are technically possible, but I pay a heavy price for them over the course of the following weeks so I studiously avoid them.

It takes an enormous amount of energy to fight off the pain; I am easily exhausted. I typically spend half of my day sleeping, and the other half resting or reading while lying down. The pain makes it very hard to concentrate and my meds fog my brain as well, so I’ve had to abandon both work and school. What little energy I do have, I spend on taking care of my kids and (what remains of) my health.

Sustainably, I can do activities and interact with people for an hour or two each day. On any given day I can do more, but it will cost me–my pain will ramp up as the activity goes on and I will need extra rest over the next few days (or weeks if over-do it). If I’m careful and plan ahead, I can get extra rest in the days before an activity and then splurge for an extra-long activity without the aftermath becoming too severe, but I can only pull that off once a month or so.

4 responses to “Testicular Neuralgia”

  1. It is so hard to be a “spoonie”. I recently had to explain the spoon concept to my spouse and he was horrified. It is a constant juggling act of where to spend your spoons (if you happen to have any to choose with) and where you will spend weeks paying with your spoons over one activity.

    I’m so grateful for your blog. I have recently been coming out of a long and deep depression related to my own chronic illness. It has been very difficult to realize my own limitations. It has been helpful to read about your experiences and your struggles. Your pain is more intense and more constant than mine but we share the struggle of our bodies not working with us but actively against us. Thank you for your vulnerability!

  2. My lower back pain started in 1974. It continues up to now with no sign of ending ( back pains don’t suppose to have an ending). In 2008 I received 2 emergency treatments of the pain. The second time was needed to remove the damage done in the first time. Since then I was back to “normal” i.e. the pain continues with the same intensity prior to the first treatment.

  3. If the pain is in the testicle and it’s unbearable, why not remove the problem? Sorry – just curious.

  4. Just because I *feel* the pain in my testicle, doesn’t mean that that’s where the problem actually is. Nerve pain can get “referred” meaning it’s source is one place, but it gets felt somewhere else. So removing the testicle could very well leave the pain intact. We’ve tried something similar–we cut the nerve leading to the testicle, and the pain persists (at that point, there is no need to remove the testicle, since the pain must not be coming from there).