12 Months in and stuck

[Violet M]

Did you also have burning sensation that would last for days after internal pelvic floor work? I experimented and for me even putting a tip of a finger for 10 seconds generates pain and burning for 1-2 days. I am not letting physio anywhere near my rectum as I will be in absolute agony after that, so we did not perform the entrapment tests that you mentioned.

... when I read surgical stories patients typically are: "Pain 10 out of 10, 24/7, bedridden, unable to walk or stand...". I am on the other side somewhat functional. I can live my life in moderate pain in 15 minute driving radius around my home. Do you know of examples of patients were also functional, but decided to proceed with surgery? Will a surgeon even consider doing a surgery on a functional PN patient?

Thank you,

Alex

Why an MRI of the spine? Because that is the typical protocol followed by most surgeons since sometimes PN-like symptoms can be caused by a spinal radiculopathy so they like to rule that out before doing an invasive procedure.

Yes, I had burning for a week after internal pelvic floor work, so I quit internal PT because it didn't make sense to keep irritating the nerve. I understand the exam can be painful and if the surgeon doesn't require it then you might get away without having it done. I guess the question is whether or not you would want to go ahead with an invasive surgery without having the clinical exam help to confirm the diagnosis. Since you had a good response to the nerve block that might satisfy the surgeon that you have PNE.

Many functional patients have had PNE release surgery. You don't have to be bedridden to have it.

Violet

[Alex H]

I understand that it is part of the protocol and I will definitely get it. It is just that in my case the reason for the injury is clear. The likelihood that foreign object insertion coincided with spine injury are close to 0.

Thank you. I will definitely consider confirmation by palpation before proceeding with surgery.

Alex

[romotronco88]

Hi Alex,
I'm a late 30s man who experienced something broadly similar — an injury from doing prostate massage that has totally upended everything for me for two + years. Happy to connect and be around to help unpack this and blow off steam, I know how hard and frustrating it can be and ya, blaming myself for a split second mistake was something I had to work to get over.

I was doing prostate massage about 1x a month, and it was actually helping with pain I was having in that area, which was attributed to a skin condition called lichen planus. It was a low level burning sensation on my glans, although i've now begun to wonder if that was actually nerve pain? either way, the prostate massage felt good and was therapeutic — left that whole area of my body feeling refreshed, energetic, and lit up, electrically. Until it didn't and one day, felt split second discomfort right upon entry and things for me haven't been the same.

i've dealt with some tightness, but not a lot of pain. mostly just loss of erogenous sensation and I guess you could say libido, altho I still have desire very much. i've always been able to perform confusingly, it's just the good feelings, the electricity, the fireworks and music is all gone. it's been harrowing.

I've made a decent recovery. Back to 80-90 pct sensation during good weeks. Still have a lot of off weeks however, not consistent. I believe i'm still recovering and pushing for more.

The explanation I was given by one of the surgeons who treats pudendal nerve compression and injuries, was that if you are already entrapped, a small or seemingly minor thing can cause the nerve to stretch or get irritated because it's already caught. it made sense to me.

I still don't understand exactly what happened to me, maybe I do need to do an MRI or something, and there is a mental component that is significant. Since there are no diagnostic tests, who is to say there's not a small chance this is just some mind body storm that doesn't even involve entrapment. Unlikely but can't rule it out.

I would say, if your sensation is still good and your libido is there, appreciate what you have and keep working on the pain. Pain sucks, don't get me wrong, but I believe that is something that is easier to get over and around, then lack of sensation. Is your sexual / erogenous sensation still good? And ya man, i hear you on beating yourself up. Our bodies deceive us sometimes. Feel free to DM if you ever want to chat.

[Violet M]

The explanation I was given by one of the surgeons who treats pudendal nerve compression and injuries, was that if you are already entrapped, a small or seemingly minor thing can cause the nerve to stretch or get irritated because it's already caught. it made sense to me.

I still don't understand exactly what happened to me, maybe I do need to do an MRI or something, and there is a mental component that is significant. Since there are no diagnostic tests, who is to say there's not a small chance this is just some mind body storm that doesn't even involve entrapment. Unlikely but can't rule it out.

And once the nerve is inflamed, if there is a tight space (an entrapment) and the nerve can't glide when you move, then it just won't heal until that tight space is released allowing the nerve to glide again.

Often an MRI won't show an entrapment even if there is one, but still, the surgeons like to do an MRI prior to an invasive procedure just in case there is something obvious like a tumor that causes you to develop pain from something like prostate massage, that normally wouldn't cause you to have pain.

Violet

[Gauxa]

Hi there.
The surgery, it’s typically reserved for severe, disabling cases, but there are instances where patients with moderate symptoms and decent function choose surgery because their quality of life is still significantly impaired. Surgeons may consider it if conservative measures have failed and imaging or nerve blocks suggest a clear entrapment target. However, the decision is highly individual, weighing risks and benefits carefully.
If you’re considering surgery, seek a surgeon experienced in pudendal decompression and discuss your specific function and pain levels honestly. They can help assess if surgery might realistically improve your daily life without undue risk.

[aussie_surfer]

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[Violet M]

Very well said, Aussie. Thanks for that very informative post.

Violet

[stephanies]

Alex,

You PN may have started with the insertion but it could be there is an issue present that was previously asymptomatic and this small event triggered it to become painful. MRIs aren't invasive and sometimes an explanation for pain may be found that could lead to a treatment option. I hope you get it figured out.

Stephanies

[Alex H]

Hello everyone,

I wanted to share some positive news: I do not have pudendal neuralgia. A lot of my symptoms were consistent with pudendal neuralgia, but after finding a good pelvic floor physiotherapist (it was my 4th therapist) we identified is that what I have is a muscle spasm, not pudendal neuralgia. This is a treatable and reversable condition. I am doing about 50% better now and working towards full recovery from this nightmare.

I am deleting my profile and hope that I never have to come back to this forum as this experience was very traumatic for me and I want to forget this as soon as possible.

I wish everyone who is reading this post to recover from their pain.

Alex

[Violet M]

Glad to hear you are doing better, Alex. Does your PT think there is no irritation of the pudendal nerve from the muscle spasm then?