Health Organization for Pudendal Education

I just wrote a very lengthy post and when I hit submit it asked me to log in again and I lost everything. If this post seems lacking in detail, it's because i'm very frustrated right now.*

I've been seeing a doctor who is pretty experienced with pudendal pain, and he seems to think that my pain is not coming from the pudendal nerve but from the S3/S4 sacral nerves. From what I can see it looks like they both branch off into the pudendal nerve so I don't know how you can rule out one over the other, but regardless, I was given a "S3+S4 bilateral local anesthetic injection", without steroids. Twice. He cautioned me that the local anesthetic only lasts for 2 hours, so immediately after the procedure I had to judge if the pain disappeared. This was difficult because I was also given general anesthetic during the procedure to calm me down, so I had to figure out if any reduction in pain was the result of the LA or the GA. Needless to say, the first block I was confused. I think I noticed a reduction in pain initially, but I was quite groggy. But as the day went on I noticed a lot of lower back pain which I wasn't used to, to the point where I could barely bend forward.

The doctor didn't know what to make of it so we did another block. Long story short, more or less the same thing happened. I did notice right after the procedure the scrotal pain which I always have was gone, and my lower back was pretty fine, but I still had rectal pain and difficulty sitting down. That could have been the fact that the injection points were around that area and I was sore from that, i'm not sure.

Basically the nerve blocks did not act as a great diagnostic, as I only had a small window of time to figure out if they actually helped. At this point, I'm really hesitant about possible surgery on a nerve that may or may not be the culprit. The doctor was not that enthusiastic about surgery either, warning that there is a 5% chance it could go really bad, like losing the ability to walk.

But on the other hand, I've had this pain for 3 years and have exhausted every option. This is the most experienced doctor in my city regarding pelvic pain and it seems like he is out of ideas. I've been referred to every other doctor imaginable and they all came up with dead ends. If I had any hope that there would be some solution after seeing 8 different doctors, it's gone now. I can't even do any research on my own because I have no idea where to get information on "sacral nerve" pain or specifically the S3/S4 branches. Help me.

Hi Volans,

The pudendal nerve does go through S3 and S4 (and S2), so I agree that it is odd to see that area as a problem and not think it could be causing pudendal pain. What city are you in? The treatments section of the home page lists doctors from many countries who are knowledgeable about pn. I'm guessing you've reviewed it, but I'm mentioning it just in case you haven't. Is the doctor who did the blocks the one who would do the surgery? I don't think I would do surgery with a doctor who wasn't sure about it himself. Have you had a 3T MRI? Have you considered a stimulator?

April

April wrote:Hi Volans,

The pudendal nerve does go through S3 and S4 (and S2), so I agree that it is odd to see that area as a problem and not think it could be causing pudendal pain. What city are you in? The treatments section of the home page lists doctors from many countries who are knowledgeable about pn. I'm guessing you've reviewed it, but I'm mentioning it just in case you haven't. Is the doctor who did the blocks the one who would do the surgery? I don't think I would do surgery with a doctor who wasn't sure about it himself. Have you had a 3T MRI? Have you considered a stimulator?

April

I'm in Toronto. The pain clinic I was referred to is regarded as one of the best in my city and I've seen several doctors within that clinic, and actually have two doctors there i'm in contact with these days. One of them does the diagnosing, the other does the block, but they practice in the same office and they talk regularly with each other. I haven't asked who would do the surgery but I assume it would be my doctor who does the blocks.

I don't know what kind of machine I had but they did 2 MRNs on me. They were conducted at Mount Sinai in Toronto and I don't see a "3T MRI" listed on their webpage. I also don't know what a stimulator is. Is there some reading you could point me to?

A stimulator is a device that stimulates your spine, drg (dorsal root ganglion), or the pudendal nerve itself. It uses electricity and it is surgically implanted under your skin in one of those places. This discussion on the home page references the spinal stimulator (http://www.pudendalhope.info/node/22). Some pain doctors do these (e.g., mine does the spine stimulator but not the other two). I am going to do this---probably the drg---if my surgery does not eliminate the pain. You can put drg stimulator into the search box and you'll see some threads by kit who had a very good outcome with this.

So I'm guessing this is a back surgery, right? Not decompression surgery, right? Is the doctor who would do the surgery a neurosurgeon? I have looked into back surgery myself (I have a bad back), and I decided that if I did it, I would do it with a neurosurgeon (not an orthopedic surgeon). I've not heard of pain doctors doing back surgery (or decompression surgery).

I think MRNs are good. I'm not sure if you can get the MRN in a 3T form. When I was deciding on what kind of MRI to get this summer, I decided to go with the 3T MRI (rather than trying to find a place that had an MRN), because most of the doctors I was going to ask to review it normally received MRI images (not MRN images). But, I think MRNs are useful. One doctor I talked to this summer thought that would be the best kind of MRI to do.

April