Health Organization for Pudendal Education

I just don't see any options. Shots, PT, diagnostics didn't work. Pain is progressing. The only minor relief I get is from the opioids. What is left? Possibly an ablation? Damaging the nerve further seems really frightening. Living with this pain, especially when the testicle pain flares up, seems worse than death.

Steve,

Have you had a pelvic MRI and one of your lumbar spine? Sometimes issues show up there, like pelvic congestion or spine problems, that could be the underlying cause of PN. I am sorry your pain is so horrible right now. I’ve been in that place too.

Stephanies

My damn pain doctor is cutting my oxycodone. That is the only thing that helps my severe testicle pain.

So sorry about the reduction in pain meds. Stephanies raises a good point. You should request an MRI just in case there is something that they can see or something unrelated to pne that shows up on your spine. You could request that the place doing the MRI use the Potter protocol. I have that protocol so if you message me, I can send to you. I also found tremendous relief from ice and, eventually, a very hot heating pad. I don't think I could not have survived without ice. So, those are two options to consider.

April

I had an MRI several weeks ago and it was reported as un-remarkable

Hi Steve,

MRI's often don't diagnosis a pudendal nerve entrapment even when you have one, but at least they can rule out some other serious issues.

Unfortunately, doctors are under a lot of pressure not to prescribe too many opioids. Are they suggesting any other type of medication to supplement they oxy -- such as lyrica or something like tramadol? Not sure if your doctor would consider prescribing buprenorphine which is technically a narcotic but doesn't have the same addictive problems as typical opioids. It is effective for some people so it might be worth asking about. Also cymbalta is effective for some people, especially in combination with lyrica. Both of those drugs have to be taken as prescribed and you can't just quit them suddenly. When you quit taking them you have to go off slowly.

I know you are limited with doctors who treat PN near you. When I was in a similar situation as you with nothing local helping and no signs of improvement, I eventually took the giant leap of traveling out of town to one of the PN surgeons for another opinion. I know that's hard to do but it is an option to consider.

Violet

so.. my pain has been getting worse and now it is also on the left side so bilateral in alcocks canal.

That's discouraging for sure. Sounds like what happened to me -- eventually both sides went crazy. I think more pelvic muscles start to tense up over time. Are you getting any treatment still or are you sort of in limbo?

Violet

I am doing pelvic PT, which honestly doesn't amount to anything, and seeing a pain doctor for meds. I think I am going to let pelvic doctor do another round of injections? Is this a bad idea?

My understanding is that if you aren't having any improvement after 6-12 sessions of PT, then you might be wasting your time. I can't say for sure about the wisdom of more injections - I don't know what kind of injections he's talking about. I do know that there are people who had lots of nerve blocks who ended up getting more nerve damage from the nerve blocks so I would be cautious about too many nerve blocks.

If your pelvic floor muscles are tight and they are giving you injections into the muscles, like trigger point injections or Botox, there is a possibility they would help, but if you have already tried them with no good results it's hard to see how more of the same would help. If you had some injections that helped previously, then it might be worth a try to see if you get more relief this time. It's a really tough decision. Does the doctor who wants to do these injections have any literature or good experience that gives him a lot of confidence that more are going to help? Has he given you what you feel is an honest assessment of what the risks are? Maybe I'm just a difficult patient, but I would be asking a lot of hard questions before going ahead with them.

Violet