Health Organization for Pudendal Education

I was finally diagnosed with Pudendal Neuropathy 2 weeks ago, although I have had it for 41 years, including starting with the blow-up donut the week of giving birth to my son. I have exactly, textbook, every symptom and had been telling docs, PT, gyne for all these years while carrying my donut cushion! No one ever mentioned PN. This doctor immediately gave me a nerve block into my vagina with no fluoroscopy, deadening or anything else. She is a very young doctor at a respected clinic with Pelvic Floor specialists. She reached into my vagina, yanked out my nerve, twisted it around for a while to see how loud I could scream and then stuck in a needle with Lidocaine. Then she said, "Now I will do the other side". I was screaming and sobbing. It was a worse pain than the top pain in childbirth (which, of course, was with no anesthesia in 1977 and after 36 hours of labor). It did immediately take care of most of the pain and burning but the experience was horrific. I see her again in 2 months but am scared to death to have her touch me again. The outside of all the "privates" burning pain is back as well as nerve pain in some areas but the piriformis and other pains are considerably lessened but not gone. I am concerned after reading online that at a minimum, an anesthetic before the procedure would have helped or another method. I can't believe that this level of pain would be standard or acceptable. I am not a wuss at all and have been in constant pain since a botched childbirth but this was unbelievable. I am considering asking for another doctor but am not sure how to handle this. She did, after all, diagnose me, but I get sick thinking about going through that pain again.

Hello PG,

Sorry to hear you went so long without a proper diagnosis. I am having a very difficult time understanding your description of what happened with the doctor though, because I don't see how it would be possible anatomically to yank out your nerve and twist it around. So I am wondering if you may have misunderstood exactly what took place during the procedure. I can't really say for sure whether you should go back to her or not. I mean....if your nerve really did get yanked out that would be pretty incredible and I would say she is incompetent and don't go back, but I just can't see how that is even possible. If you are really concerned I think it would be wise to get a second opinion from a different physician.

Violet

Violet, I was being a little facetious. She did get a hold of the nerve. Apparently it is hard to locate the exact
spot, without floroscopy or x-rays, etc. but this doctor, put her hand in my vagina and moved around pinching or whatever while I screamed in pain. That was her method of finding the nerve because it is excruciating. She then inserted a plastic cone and put the needle through it to give the shot and the repeated on the nerve on the other side. I was busy cursing, yelling and crying and she didn't share much information. Since nothing I read gives this procedure as an option, I was concerned. It certainly worked to identify the right place to give the shots but seemed unnecessarily painful. It definitely felt like the nerve being yanked out and pinned to the ceiling though!

OK, thanks for the explanation -- that makes sense.

Well, some doctors are competent but don't have much of a bedside manner. It appears she may fit into that category since the block worked and she diagnosed you -- it seems like maybe she knew what she was doing in the end. But I can understand why you would be reluctant to go back to her.

I remember my appointment with the PT who figured out what my diagnosis was. She told me it was pudendal neuralgia and then she massaged the nerve to try to get blood flow to the area. It was not fun and I had a terrible flare-up for a week afterward. So I kind of can relate to your story.

Violet

I had a few steroid nerve blocks. They were painful for about two weeks.

The last visit I made to the pelvic floor physical therapist she massaged a ligament directly over the Pudendal nerve. It hurt a little as she did it, but afterwards I had flareups and pain for quite a while.

Gretel wrote:I had a few steroid nerve blocks. They were painful for about two weeks.

The last visit I made to the pelvic floor physical therapist she massaged a ligament directly over the Pudendal nerve. It hurt a little as she did bestoutdoorfirepit.com, but afterwards I had pain for quite a while.

Exactly my story!

I just had a diagnostic nerve block 2 days ago. I feel your pain. I rate that pain level a 10! I broke out in a sweat. She just kept telling me to breath but I couldn't unclinch my jaw. I'm supposed to go back in a month and I'm absolutely terrified!!

Maybe you could ask the physician about giving you some anti-anxiety medication before the injection, unless that would interfere with evaluating the results. Some docs use sedation when they do nerve blocks, some don't. Mine were all done without sedation so I understand what you are talking about.

Violet

I understand it was for diagnostic purposes, but it seems like a lot pain for only 2 hours of relief. The next day was really painful! Everything felt swollen and tight. It's been a week and I'm close to my baseline. So that's good!

When they give you a nerve block with steroids, how many shots is it? One or two? And how exactly does it work (the mechanics of it)? I'm having a difficult time wrapping my head around this. If the steroids are liquid how does it stay there for a slow release? It's not like it's encapsulated.

If you had a choice, which do you think would give longer relief, a block or pulsed radiofrequency ablation? Also, what would happen if they just killed the nerve?

Hi Hiking Spider,

There is a detailed description of a nerve block on the home page under Treatments. Here's the link: http://www.pudendalhope.info/node/51. They usually put a needle into the glutes, sometimes on one side and sometimes on both, and they inject a numbing agent and, often, a steroid. This procedure is normally done with some kind of imaging so the doctor can direct the medication to the pudendal nerve. If a steroid is also injected, the procedure is supposed to have an extended benefit. (If the steroid is not injected, the procedure is not supposed to have an extended benefit--it's done solely for diagnosis.) I'm not sure how they can be sure that the steroid has a longer-term (and, in fact, I did not have any extended relief from the two nerve blocks that I did). But, I have gotten steroid shots in my joints for arthritis, and that does work well and it works for many months. It sounds like you are not noticing any reduction in pain from the nerve block? Some doctors suggest getting two of these before concluding they don't work, so it may make sense to get a second one. On the other hand, many people on the forum report no relief, so you may want to ask your doctor more questions about the advisability of doing a second one given that the first one didn't work.

Pulsed radiofrequency ablation is less common than nerve blocks, so I don't have as much info (from reading the forum) about that, but I do think I've read of someone benefiting from it. You could put that in the search engine and see what you find. The nerve block is a more conservative treatment, so that may be a reason to do another nerve block before the PRA. What is your doctor recommending at this point?

April