Diagnosis? My story so far

[Dexter]

Greetings from Northern Ireland and thanks for letting me join up.

I'll make this as short as possible as I tend to ramble a bit. Sorry. This is the story leading to my current situation.

Male, 51. History of minor lower back pain every few years. Injured my back in work pulling on a heavy object in August 2023. Back pain and sciatica for a few days. Sciatica subsided and then this weird numbness in my buttocks when sitting down began. Went to doctor who referred me for xray and physiotherapy. Xray result was mild degenerative on spine, doctor said common enough for someone my age and working background.

Physiotherapist wasn't happy with the numbness in my buttocks and I was referred for a mri scan to rule out cauda equina before commencing physio. Mri scan results were same as xray. Mild degenerative on spine, nothing else of concern found. Commenced physio which helped with my back pain. Numbness in buttocks subsided after a few weeks and I had been on holiday to the lovely warm canary islands which I believed helped.

All good until a few weeks ago when the numbness when sitting down returned. Pins and needles sensation in scrotum and buttocks feel as if they're really cold at times. It's not painful yet but past the point of just feeling numb and is bordering on pain. It's only when sitting down but when walking around the area between my scrotum and buttocks (perineum) is really sensitive and I can feel my underwear touching it, it's horrible.

Numbness when sitting isn't too bad in the mornings but intensifies the more the day goes on and is almost unbearable by night time. Only when sitting down though.

So far the symptoms I have is numbness and discomfort in buttocks/scrotum when sitting down, bordering on pain. Pins and needles in testicles occasionally. Perineum area tender/very sensitive and can feel underwear touching/rubbing that area when I'm walking around.

I'm going to contact my doctor next week and mention pudendal to see what he says.

A couple of questions if anyone could help it would be greatly appreciated.

Would a back injury caused by a pulling and twisting motion bring on pudendal?

Is it common for pudendal to go away for a month or two and then return as in my case?

Thank you,

Dexter

[VideoSandwich123]

Hey Dexter,

Our symptoms seem very similar. Mine started getting bad a few months ago. I’m still working on addressing these issues.

While unfortunately I can’t give you answers, I might be able to at least help share some information based on my recent experiences.

I would recommend several opinions on your MRI. I personally think it’s ridiculous when spine issues are just brushed off as “common” or “normal” when there are clear symptomatic issues. Not everyone is symptomatic. And not everyone experiences the same symptoms in the same areas. It doesn’t mean it IS a spine issue, but I think it should be at least triple checked.

You can reach out to Dr. Irwin Goldstein in San Diego. He does free 10 minute courtesy calls. He will have their spine guy review your MRIs.

There is also Dr Potter in New York if you wanted to get pelvic and lumbosacral MRIs. She is an expert radiologist specializing in pelvic nerves. You will see her mentioned on this site a lot.

Many people will suggest seeing a pelvic floor physical therapist for a full asseessment. This is a great next step as you might just have a tight pelvic floor that can be addressed conservatively. Pudendal surgeon Dr Hibner would recommend using this site to find a pelvic PT in your area: https://hermanwallace.com/ (sorry just remembered you are in Ireland so this link is probably not useful. Leaving it here for others in the future).

I would also recommend seeing a good sports medicine chiro. These issues can be body-wide musculoskeletal imbalances potentially causing various nerve compressions which they can help address as well (but it sounds like you’ve already done this).

Your issues certainly sound related to the pudendal nerve which can just be because of nerve irritation. Honestly, I would be surprised if your doctor knows much of anything about the pudendal nerve but it of course doesn’t hurt to ask and they might have a good referral.

Basically, see a pelvic floor PT for an evaluation. But I would not totally rule out the spine as a potentially contributing factor yet imho. I would suggest scheduling the call with Dr Goldstein as well. I’m pretty sure he will call with people out of country, but you would need to double check of course.

Please feel free to reach out to me directly as well.

[VideoSandwich123]

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!

[Violet M]

Hi Dexter,

Maeve Whelan in Dublin has taught other PT's how to treat pelvic pain so you might want to contact her to find out who she would recommend you see for PT. https://www.pudendalhope.info/european- ... nd-ireland
Since you are in Northern Ireland, you could also consider William Taylor on that list. He's in Scotland and is very experienced.

In addition to what Videosandwich suggested, the PT can check you for sacroiliac joint dysfunction, piriformis syndrome (for me it causes numbness in the buttocks when sitting), or strained ligaments and pelvic instability from your injury.

Symptoms of pudendal neuralgia can come and go. That's not to say you have pudendal neuralgia, but your symptoms are located in the area innervated by the pudendal nerve so it certainly makes it a possibility. Hopefully you can find a physician in the UK who can help you. Maeve Whelan might be able to direct you to a good physician also.

Violet

[Dexter]

Wow. Thank you so much for your replies. I will call my doctor but I don't hold much hope from that. I will reach out to some of the specialists you have been so kind to name. Long road ahead and I think I may have to reach out to my employer for support too as my symptoms began immediately after an accident at work and their insurers have admitted liability as there was no safe system of work in place. I was off work for 3 months due to the back injury element and have returned to full duties as my current symptoms do not prevent me from working. I guess I need to be careful in case work makes things worse.

Thanks again,

Dexter

[Violet M]

Ah, that's too bad that you were injured at work, but hopefully your employer will be supportive, and workmen's compensation will pay for your treatment. Wishing you the best,

Violet

[VideoSandwich123]

Hey Dexter,

Just wanted to check-in. Any updates or progress in the past week with regard to your employer, doctors, etc?

Hope you’ve been well.

[bartland]

Hi Dexter,

Did the ganglion impar block give you any relief? I am considering having one and it is so hard to find any information about its use for PN.

Thanks,
Bart

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!