Health Organization for Pudendal Education

VideoSandwich123 wrote: ↑Sun Apr 07, 2024 1:01 am And of course, do not rush into anything even remotely more invasive until you have exhausted all of the conservative treatment options thoroughly first.

The following is not advice in any way as I am obviously not a doctor. This is part of my recent experience that might be of some use related to your questions:

I also went to the ER and received MRIs for suspected cauda equina syndrome. I had burning/tingling/numbness in my entire groin. I was negative for cauda equina syndrome thankfully. They did find a disc bulge at L4/L5 impinging on L4 nerves. Which they said shouldn't cause my symptoms. They weren't very concerned about it.

Last week I had a leg EMG. I was diagnosed with peripheral polyneuropathy and lumbosacral radiculopathy (specifically at L4, so basically my legs). I do not really have any back pain. But I do have some leg issues. I was again told that this does not explain my pelvic symptoms. But my main issues are in the pelvis.

I've tried trigger point injections, physical therapy, medicines, suppositories, etc. I spoke to pudendal surgeon Dr. Hibner who said I have obvious symptoms of a tight pelvic floor with muscle spasms. I've seen 2 pelvic floor PTs (and I'm seeing a third one on Monday). They both said my pelvic floor is not hypertonic or spasming and that my muscle reflexes seem fine on internal exam.

Unfortunately, my symptoms remain. Next week, on the advice of my spine/pain doctor, I'm going to try a ganglion impar block as a diagnostic and to see if this provides any relief. He seems much more concerned about the bulge and how/if it's causing the groin issues. We may then try various other nerve blocks depending on the outcome.

Research Tony Mork's Toxic Annular Tears (https://drtonymork.com/back-surgery/tox ... bar-spine/). This is kinda sorta part of Dr. Goldstein's theory on spine issues that may result in various genital/pelvic disorders.

Here is a relevant quote from that link:

"The leakage of these inflammatory chemicals completely through a tear in the annulus will result in stimulation of the nerves that pass over the back of the discs, like the nerves of the cauda equina, that goes to your buttocks, legs and feet. The nerves stimulated by the chemicals can cause a variety of sensations from numbness, pain, burning and cold. Your complaints can confuse the clinician looking at you because you have extremity pain, but no disc herniation.

This explains how are you get extremity symptoms without a herniation? The annular tear is providing a pathway for inflammatory chemicals to be in contact with your nerves passing over the annular tear."

Confirm if you have any annular tears on your spine MRIs. Again, get multiple opinions just in case. If you do, there is a diagnostic procedure (that apparently can be painful?) that I believe is called a discogram. This can help determine if spine issues are causing a chemical "leak" further downstream potentially into the sacral nerves. Again, this is just one possibility to maybe investigate. There could also be various cascading neuromusculoskeletal issues that are compressing nerves.

And it may not even necessarily be the pudendal nerve as the main culprit. There are other nerves at play that may have similar symptoms: iliolingual, genitofemoral, hypogastric, sciatic (as you are already aware), etc. Some of these nerves originate in the spine and not the sacrum. I also started physical therapy twice a week at a sports medicine chiro clinic that have helped people with very similar issues related to all of these nerves.

Many doctors have told me that my spine could not cause these symptoms. And that many people have spine issues on MRIs without symptoms. But I've had many many many tests, and this is the only true official diagnosis I have (and to be fair, these pelvic issues are notoriously difficult to diagnose). That of course does not mean it's a spine issue. But it makes me want to investigate further, as there have been cases of the spine causing genital disorders. Just because it's "rare" doesn't mean it's not possible. Hell, pudendal neuralgia itself is rare!

This is completely my own bullshit thought/theory that is not founded on anything other than pure speculation on my part so please take it with a large grain of salt: I think some of the failed pudendal surgeries are because those people may not have the pudendal nerve as their main issue. I think there may be more spinal related issues than we're currently aware (as well as the other nerves mentioned above). It can be very complicated of course.

Again, none of this is advice. Just sharing in case it's of any use. Hopefully your issue is just a hypertonic pelvic floor that can be addressed through physical therapy. Also, if you truly think that the holiday helped, you can look into TMS mind-body syndrome juuuuust in case there might be a psycho-somatic issue. I can tell definitely tell you that obsessing about these issues is not good, and it's not good to just immediately jump into a bunch of various treatments all at once. I've made these mistakes.

Please keep us posted on your progress and story. As you can see, I also tend to ramble. So please, feel free to ramble away!