My story - testicle and pudendal nerve pain

[poncharello]

Hi guys,

I recently joined and have found all of your posts extremely helpful. I thought I’d post my story to see if anyone has any recommendations. Thanks in advance for reading.

I’m an early 40's, otherwise healthy male in San Francisco, suffering from testicular pain for almost four years now. Four years ago, after separating from my wife, I experienced mild and then intense pain in my left testicle. I was masturbating a lot around that time – my therapy for dealing with depression from the divorce – and that’s when the pain first came on. Several doctors’ appointments later, I was diagnosed with epididymitis and prescribed 30 days of Cipro. The antibiotic worked and the symptoms went away. All good…until the pain came back a month later. Repeated another course of Cipro, pain went away, and then came back again.

My symptoms were, and still are, pain when sitting or putting any pressure on the left testicle. I get a sharp pinching/burning pain in the testicle and left groin area, and it often radiates down my left thigh and butt. Sitting at work became a big problem, as did my ability to sit through dinner with friends, concerts, movies, etc. I was also having trouble sleeping due to the pain, and when I don’t sleep, the pain becomes much worse…a vicious cycle.

My urologist referred me to another urologist at UCSF to explore other options. By this point, my depression was pretty bad due to the affect on my quality of life. The second urologist told me about the link to my symptoms and depression and suggested trying an anti-depressant. I went on 20 mg of Celexa which helped with the depression, but not with the pain. I’m still on the Celexa today. Somewhere in this time, I began dating and was able to have sex regularly without any pain, which was great. This has since changed, and when things are bad, I now have pretty severe flare ups for 1 – 3 days after ejaculation. In general, I find that when I’m happy and getting sleep, the pain lessens.

The next suggestion by the UCSF urologist was Gabapentin, which has been a godsend. This is the only thing that reduces the pain. I take 900 – 1200mg day, and unless I’m having a particularly bad flare up (like I am right now), it really helps moderate the pain. No side effects for me, although it might make me a little spacey. I’ve been on it for 2.5 years now, so I can’t really remember. After this, the only other avenue the UCSF urologist had to discuss was surgery. Given everything I’ve read, the risks are just too great, especially since I want to have kids someday. He then referred me to Dr. Jerome Weiss at the Center for Pelvic Pain.

Dr. Weiss did a very thorough examination of the pudendal nerve, trigger points in the rectum, testicle, etc. The examination itself gave me such a bad flare up that I couldn’t sit for a month! He suggested that due to the multiple bouts with epididymitis, that I most likely just had nerve damage. He suggested that I should just stay on the Gabapentin and that the nerves would heal themselves in a year or less.

After a year with no improvement, we then tried an injection into the pudendal nerve area to see if that would temporarily reduce the pain. It didn’t, however it caused a major flare up. Again, Dr. Weiss felt that the issue was nerve damage and the best action was just to wait it out. Given that I wasn’t having pain at the trigger points in the rectum, he didn’t think that the issue was muscular.

On my own, I tried seeing an acupuncturist and had some good success at first. After a session of needles, I would have zero pain for 24 hours! I had 6 or so successful sessions like this, but then it just stopped working. Not sure why. I took herbs as well, but they didn’t seem to help. Another thing I’ve tried is apple cider vinegar 3x/day, but no luck.

At this point, I’m out of next steps and looking for something to keep my hopes up. My pain oscillates between manageable with the Gabapentin to having these week to month long flare ups where things get really uncomfortable and I have to regulate how frequently I can have sex or masturbate. Any suggestions?

[webslave]

The fact that examinations cause so much pain really does point to trigger points, in my opinion. If you are in the SF area, the Wise Anderson clinic would be the way to go.

[Caedar]

Have you tried any at-home external trigger point release and stretching? Some of my first and worst symptoms were testicular, and I found that release eliminated them.

[poncharello]

Thanks for the suggestions. I've read Headache in the Pelvis and considered the Wise Anderson clinic. Its an option, but very expensive, requires a week's vacation from work and I've read mixed reviews on effectiveness. Any thoughts from folks on the forum?

@Caeder, I do yoga occasionally, but nothing regular. What specific trigger points and stretches to you recommend to start with?

[Caedar]

Start with your abdominals, iliopsoas, gluteus muscles and piriformis, and thigh adductors. I recommend the Theracane, hands, and a lacrosse ball as tools.

[poncharello]

Thank you Caedar. I haven't dug into the stretching yet because I've been experimenting with a different path first. At the suggestion of a few others on this forum, I've found some very promising early success with eliminating gluten from my diet!

I've been at it for 2 weeks now, and when I don't eat any gluten, I have almost zero pain. During this time, I've slipped up and had bread or beer a few times. When I eat it, the pain returns and stays with me for ~24 hours, then subsides. Still too early to call it a silver bullet, but very promising so far! Some quick web searches clearly show a link between gluten and nerve pain for others as well.