HI violet and April
Just wanted to know if you both had similar symptoms?
What was your diagnosis?
Are you now better?
Thanks very much Matthew
Pudendal nerve block scheduled for the first time
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
Hi Matthew,
Yes, I had frequent urination and feeling of constant need to pee. I took lexapro prior to surgery and it dampened the symptoms somewhat. I also had perineal pain/burning and pain with sitting. My diagnosis based on distribution area of pain in the pudendal nerve area, nerve block, pelvic exam, and history, was pudendal nerve entrapment and I had PNE decompression surgery in 2004. Now that I am recovered from surgery I am 90% better. I don't take any medication for pudendal symptoms now. I also have bad ligaments so I am careful not to do activities that strain the pelvic ligaments too much.
Violet
Yes, I had frequent urination and feeling of constant need to pee. I took lexapro prior to surgery and it dampened the symptoms somewhat. I also had perineal pain/burning and pain with sitting. My diagnosis based on distribution area of pain in the pudendal nerve area, nerve block, pelvic exam, and history, was pudendal nerve entrapment and I had PNE decompression surgery in 2004. Now that I am recovered from surgery I am 90% better. I don't take any medication for pudendal symptoms now. I also have bad ligaments so I am careful not to do activities that strain the pelvic ligaments too much.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
Hi VioletViolet M wrote: ↑Thu Dec 28, 2023 1:07 am Hi Matthew,
Yes, I had frequent urination and feeling of constant need to pee. I took lexapro prior to surgery and it dampened the symptoms somewhat. I also had perineal pain/burning and pain with sitting. My diagnosis based on distribution area of pain in the pudendal nerve area, nerve block, pelvic exam, and history, was pudendal nerve entrapment and I had PNE decompression surgery in 2004. Now that I am recovered from surgery I am 90% better. I don't take any medication for pudendal symptoms now. I also have bad ligaments so I am careful not to do activities that strain the pelvic ligaments too much.
Violet
Thanks for you time in replying and I'm sorry for all the questions I did have pain with sitting after the symptoms had gone away for a week but that's now gone and all I have is constant pain and weird sensation in the tip of the penis which makes me want to pee alot.
Did your mri show up your nerve entrapment ?
At the moment I have no hard evidence I've Evan got pn and it's only been through seeing several specialist and reading alot that I've considered that I have got pn.but what ever it is it all seem to come after I fell onto my Lower back area.
It's driving me mad and I've been through alot of depressing and mental health issues all become of this I really hope I can find out what's causing it soon.
Thanks very much
Matthew
Re: Pudendal nerve block scheduled for the first time
Hi Matthew,
You are welcome to ask as many questions as you like -- that's what we are here for. I wish we could answer them better but we do our best.
My MRI didn't show anything definitive, but back then, I don't think they were even doing pelvic MRI's for pudendal neuralgia so I didn't have a pelvic MRI. I only had an MRI of the lumbosacral area and the lumbosacral plexus. Even nowadays though, from what some patients have posted, some of the more experienced PNE doctors don't feel like MRI's are 100% accurate at determining if you have a nerve entrapment. I still think it's important to have an MRI to rule out anything obvious that could be a problem. But you have to put that together with the other diagnostics -- like a clinical exam from a PN doctor or an experienced pelvic physical therapist, your response to nerve blocks, your symptoms, and your history, etc.
The pudendal nerve innervates the external bladder sphincter which is why pudendal nerve entrapment/pudendal neuralgia can be associated with the need to feel like you need to pee a lot. https://www.ncbi.nlm.nih.gov/books/NBK482438/
The bladder neck is more toward the internal bladder sphincter so I don't know if a tight bladder neck would be related to your pain.
Violet
You are welcome to ask as many questions as you like -- that's what we are here for. I wish we could answer them better but we do our best.
My MRI didn't show anything definitive, but back then, I don't think they were even doing pelvic MRI's for pudendal neuralgia so I didn't have a pelvic MRI. I only had an MRI of the lumbosacral area and the lumbosacral plexus. Even nowadays though, from what some patients have posted, some of the more experienced PNE doctors don't feel like MRI's are 100% accurate at determining if you have a nerve entrapment. I still think it's important to have an MRI to rule out anything obvious that could be a problem. But you have to put that together with the other diagnostics -- like a clinical exam from a PN doctor or an experienced pelvic physical therapist, your response to nerve blocks, your symptoms, and your history, etc.
The pudendal nerve innervates the external bladder sphincter which is why pudendal nerve entrapment/pudendal neuralgia can be associated with the need to feel like you need to pee a lot. https://www.ncbi.nlm.nih.gov/books/NBK482438/
The bladder neck is more toward the internal bladder sphincter so I don't know if a tight bladder neck would be related to your pain.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
Thanks violet for your time
I'm going to see a physical therapist in a few weeks and see if they can find anything I definitely feel like mine is mechanical some how as when I first had symptoms it completely disappeared for a week while I was fishing i was on some antibiotics at the time given to me by an out of hours doctor for urine/sti infection although I didn't have that.And when I say it disappeared it literally switched off I had the symptoms on the Thursday and the minute I arrived to go fishing its switched off just like that,It didn't return until the following Thursday once I started working, exercising and sex,to me it seemed to be triggered by sex as that was the last thing I did before it came back the following morning,but this time I had saddle pain especially when sitting. I'm on amitriptyline and Gabapentin the only thing I noticed now I'm actually sleeping again is that I don't have any pain in the night and it's gone in the morning until I have a pee and start moving around again then it comes back.
I'm going to see a physical therapist in a few weeks and see if they can find anything I definitely feel like mine is mechanical some how as when I first had symptoms it completely disappeared for a week while I was fishing i was on some antibiotics at the time given to me by an out of hours doctor for urine/sti infection although I didn't have that.And when I say it disappeared it literally switched off I had the symptoms on the Thursday and the minute I arrived to go fishing its switched off just like that,It didn't return until the following Thursday once I started working, exercising and sex,to me it seemed to be triggered by sex as that was the last thing I did before it came back the following morning,but this time I had saddle pain especially when sitting. I'm on amitriptyline and Gabapentin the only thing I noticed now I'm actually sleeping again is that I don't have any pain in the night and it's gone in the morning until I have a pee and start moving around again then it comes back.
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
Sorry forgot to ask,once you got rid of your symptoms did your bathroom visits go back to normal?
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
I've posted a couple of replies but not sure if I did right so incase you don't see them they are on the main chatViolet M wrote: ↑Fri Dec 29, 2023 4:20 am Hi Matthew,
You are welcome to ask as many questions as you like -- that's what we are here for. I wish we could answer them better but we do our best.
My MRI didn't show anything definitive, but back then, I don't think they were even doing pelvic MRI's for pudendal neuralgia so I didn't have a pelvic MRI. I only had an MRI of the lumbosacral area and the lumbosacral plexus. Even nowadays though, from what some patients have posted, some of the more experienced PNE doctors don't feel like MRI's are 100% accurate at determining if you have a nerve entrapment. I still think it's important to have an MRI to rule out anything obvious that could be a problem. But you have to put that together with the other diagnostics -- like a clinical exam from a PN doctor or an experienced pelvic physical therapist, your response to nerve blocks, your symptoms, and your history, etc.
The pudendal nerve innervates the external bladder sphincter which is why pudendal nerve entrapment/pudendal neuralgia can be associated with the need to feel like you need to pee a lot. https://www.ncbi.nlm.nih.gov/books/NBK482438/
The bladder neck is more toward the internal bladder sphincter so I don't know if a tight bladder neck would be related to your pain.
Violet
Thanks Matthew
Re: Pudendal nerve block scheduled for the first time
I don't have the constant urge to pee anymore but since I have a severe cystocele I wouldn't say my trips to the bathroom are normal - but for a different reason than pudendal neuralgia.matthewroots77 wrote: ↑Fri Dec 29, 2023 3:58 pm Sorry forgot to ask,once you got rid of your symptoms did your bathroom visits go back to normal?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pudendal nerve block scheduled for the first time
Hi Matthew,
Yes, I definitely had urinary frequency and I took medication for it that worked. I had two MRIs. The first one (which I had two years into the problem) did not show anything, but the second one (which was done four years in and followed the Potter protocol) did show edema at the intersection of the sacrotuberous and sacrospinous ligaments on the side where I had the most pain. But, it is unusual for an MRI to show anything that directly relates to pn; they produce a lot of false negatives. I had decompression surgery on that side shortly after that, and it did reduce my pain, but it didn't eliminate it. But, my pain is infrequent and minimal enough that I can control it with a heating pad.
You mentioned that you pain switched off and then returned. That is pretty common with pn. The pain fluctuates in ways that can be inexplicable. Also, as Violet said, pt can irritate the nerve. I really only did external pt, and I don't think I gained any long-term benefit from it. But, it was still useful to learn about pn from the pt, and it did relax the external muscles and ligaments.
April
Yes, I definitely had urinary frequency and I took medication for it that worked. I had two MRIs. The first one (which I had two years into the problem) did not show anything, but the second one (which was done four years in and followed the Potter protocol) did show edema at the intersection of the sacrotuberous and sacrospinous ligaments on the side where I had the most pain. But, it is unusual for an MRI to show anything that directly relates to pn; they produce a lot of false negatives. I had decompression surgery on that side shortly after that, and it did reduce my pain, but it didn't eliminate it. But, my pain is infrequent and minimal enough that I can control it with a heating pad.
You mentioned that you pain switched off and then returned. That is pretty common with pn. The pain fluctuates in ways that can be inexplicable. Also, as Violet said, pt can irritate the nerve. I really only did external pt, and I don't think I gained any long-term benefit from it. But, it was still useful to learn about pn from the pt, and it did relax the external muscles and ligaments.
April
-
matthewroots77
- Posts: 34
- Joined: Mon Dec 25, 2023 6:37 pm
Re: Pudendal nerve block scheduled for the first time
Hi AprilApril wrote: ↑Mon Jan 01, 2024 4:22 am Hi Matthew,
Yes, I definitely had urinary frequency and I took medication for it that worked. I had two MRIs. The first one (which I had two years into the problem) did not show anything, but the second one (which was done four years in and followed the Potter protocol) did show edema at the intersection of the sacrotuberous and sacrospinous ligaments on the side where I had the most pain. But, it is unusual for an MRI to show anything that directly relates to pn; they produce a lot of false negatives. I had decompression surgery on that side shortly after that, and it did reduce my pain, but it didn't eliminate it. But, my pain is infrequent and minimal enough that I can control it with a heating pad.
You mentioned that you pain switched off and then returned. That is pretty common with pn. The pain fluctuates in ways that can be inexplicable. Also, as Violet said, pt can irritate the nerve. I really only did external pt, and I don't think I gained any long-term benefit from it. But, it was still useful to learn about pn from the pt, and it did relax the external muscles and ligaments.
April
What medication did you take for urine frequency?
What's the potter protocol?
Unfortunately no ones diagnosed me with pn and I don't know if thers any one in the UK that can help as I said I have constant pain in my penis tip although is does got at night but that might be the mess.
I'm just need someone who's very experienced in my symptoms to have a look at me,I'm seeing a pain management guy at the moment who's looked at mri report and said there's no obvious signs of entrapment or compression.
Where abouts was yours compression and what pain was you having