Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@lizziel1

Oh I can relate! This is how I got my Pudendal mess! I had emergency laminectomy surgery for Cauda Equina and a year later a fusion. I can’t sit nor lay on my back. It can be excruciating mainly in the rectal area. Maybe it would be worse, but I have partial saddle anesthesia from all my nerve damage.
I go to a pain clinic, (because lucky me I have other chronic pain), and they haven’t even tried to help with this.
I think I’m going to try a TENS unit in this area.

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I have a Nevro Spinal Cord Stimulator and it is better than a TENS. It is not perfect but does offer pain reduction for my pudendal nerve pain and leg and hip pain. After implantation you just work with a tech over the phone to get best placement using a remote control device. I also get a lot of relief from Cymbalta. I have no downside from the SCS so the imperfect relief is very helpful.

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@bunnybear

I have a Nevro Spinal Cord Stimulator and it is better than a TENS. It is not perfect but does offer pain reduction for my pudendal nerve pain and leg and hip pain. After implantation you just work with a tech over the phone to get best placement using a remote control device. I also get a lot of relief from Cymbalta. I have no downside from the SCS so the imperfect relief is very helpful.

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I’ve been afraid of the implant stimulators because I’ve heard some negative outcomes from people. I’m glad it’s helping you!
I wasn’t aware that the damaged nerves could result in paralysis in those areas, no doctor has told me this! Well this is upsetting to hear!
I recently lifted something heavy and set my pudendal nerves on fire! I’m going to have to find a doctor that will help me with this. Trouble is, I live in a very rural area. And when you can’t sit long enough to travel…. 🙁

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@lizziel1

I’ve been afraid of the implant stimulators because I’ve heard some negative outcomes from people. I’m glad it’s helping you!
I wasn’t aware that the damaged nerves could result in paralysis in those areas, no doctor has told me this! Well this is upsetting to hear!
I recently lifted something heavy and set my pudendal nerves on fire! I’m going to have to find a doctor that will help me with this. Trouble is, I live in a very rural area. And when you can’t sit long enough to travel…. 🙁

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I did not know those nerves could become paralyzed either. Maybe the person who posted it could say more on that. I waited 2-3 years before getting the SCS because I too had heard of one very bad result. I think it’s a smart idea to ask the doctor how many of these he has placed before signing on.

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Hello From Ireland,
I too suffer with awful nerve pain in that region and I highly suspect I've PN. I'm having trouble getting it diagnosed. I received a sacrum nerve block about a year ago and that's when all my symptoms started. It's effected every aspect of my life, I no longer can sit or even standing after awhile brings on a flare. I'm so sorry to hear you too are suffering and are feeling afraid like myself. I'm way to afraid to try a PN nerve block after the last nerve block into my sacrum. So I'm not sure what else can be done.

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I do have a question about a symptom I’m having, and if it goes along with my Pudendal nerve problem. Occasionally I feel the sensation of ice water in the lower part of my abdomen.
I know this is a nerve thing because I get it in my legs sometimes from neuropathy.
Anyone else?

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@ahayes

I have nerve entrapment but not in that area, I have multiple nerve entrapments in my leg and recently had surgery to decompress the entrapments and insert a peripheral nerve stimulator in the event I still have pain after I heal.

I wish you luck and you can message me anytime for support. All nerve enteapments suck and there isn't a lot of awareness of just how painful and functionally limiting they can be for day to day activities. Stay strong.

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I am in so much pain and I just had a MRI performed by the VA, and it shows sever nerve damage and spinal stenosis. My testicles hurt all the time, my back is excruciating , my neck, and siatic nerve issues. VA just wants to put me on Pain Mgmt for all of this...

Report:
PROCEDURE: MRI LUMBAR SPINE WO
CLINICAL INDICATION: evidence of lumbar stenosis on EMG
TECHNIQUE: Multiplanar, multi-sequence MRI images of the lumbar spine were obtained without the use of intravenous contrast per protocol.
COMPARISON: DX LUMBAR_SPINE 10/10/2023
FINDINGS: The conus medullaris is normal in appearance, and it terminates at approximately the level of T12/L1. The cauda equina is unremarkable.
Lumbar spinal alignment is normal.
No acute fracture or aggressive marrow replacing process is identified. There is subtle anterior wedging of multiple
consecutive vertebral bodies in the visible lower thoracic and
upper lumbar spine, which could be congenital/developmental or degenerative in nature. There is no marrow edema to suggest acute fracture.
Degenerative changes are discussed level-by-level as detailed below:
T12-L1: Moderate degenerative disc disease with mild chronic endplate degenerative changes. There is anterior disc osteophyte formation. There is mild facet arthropathy. There is no
significant stenosis.
L1-L2: Moderate degenerative disc disease with chronic endplate degenerative changes and small anterior disc osteophyte formation. Mild facet arthropathy. No significant stenosis.
L2-L3: Mild degenerative disc disease and mild facet arthropathy. Mild narrowing of the lateral recesses. No significant neural foramen stenosis.
L3-L4: There is mild degenerative disc disease with a small broad-based posterior disc protrusion. There is mild facet arthropathy and ligamentum flavum thickening. There is mild spinal canal stenosis and mild narrowing of the lateral recesses. There is moderate bilateral neural foramen stenosis. The disc abuts the extraforaminal portion of the right L3 nerve root.
L4-L5: There is mild degenerative disc disease and moderate facet arthropathy. There is mild narrowing of the left lateral recess. There is moderate right and severe left neural foramen stenosis.
L5-S1: There is a right subarticular disc protrusion causing slight mass effect on the transiting right S1 nerve root. There is severe facet arthropathy causing severe bilateral neural foramen stenosis, worse on the left. There is suspected impingement of the exiting left L5 nerve root.
Visible paraspinal soft tissues are unremarkable for examination technique.
Impression:
1. Multilevel neural foramen stenosis, including moderate bilateral stenosis at L3/L4, severe left and moderate right stenosis at L4/L5, and severe bilateral neural foramen stenosis at L5/S1, worse on the left. There is suspected impingement of the exiting left L5 nerve root.
2. Small right subarticular disc protrusion at L5/S1 causing slight mass effect on the transiting right S1 nerve root.
3. Additional multilevel degenerative changes with less pronounced spinal canal or neural foramen stenosis as above. No high grade spinal canal stenosis at any level.

Primary Diagnostic Code: Abnormality Follow-Up Needed

Where can I go to get this fixed surgically? Who's the best?

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@santilliandrew1

I am in so much pain and I just had a MRI performed by the VA, and it shows sever nerve damage and spinal stenosis. My testicles hurt all the time, my back is excruciating , my neck, and siatic nerve issues. VA just wants to put me on Pain Mgmt for all of this...

Report:
PROCEDURE: MRI LUMBAR SPINE WO
CLINICAL INDICATION: evidence of lumbar stenosis on EMG
TECHNIQUE: Multiplanar, multi-sequence MRI images of the lumbar spine were obtained without the use of intravenous contrast per protocol.
COMPARISON: DX LUMBAR_SPINE 10/10/2023
FINDINGS: The conus medullaris is normal in appearance, and it terminates at approximately the level of T12/L1. The cauda equina is unremarkable.
Lumbar spinal alignment is normal.
No acute fracture or aggressive marrow replacing process is identified. There is subtle anterior wedging of multiple
consecutive vertebral bodies in the visible lower thoracic and
upper lumbar spine, which could be congenital/developmental or degenerative in nature. There is no marrow edema to suggest acute fracture.
Degenerative changes are discussed level-by-level as detailed below:
T12-L1: Moderate degenerative disc disease with mild chronic endplate degenerative changes. There is anterior disc osteophyte formation. There is mild facet arthropathy. There is no
significant stenosis.
L1-L2: Moderate degenerative disc disease with chronic endplate degenerative changes and small anterior disc osteophyte formation. Mild facet arthropathy. No significant stenosis.
L2-L3: Mild degenerative disc disease and mild facet arthropathy. Mild narrowing of the lateral recesses. No significant neural foramen stenosis.
L3-L4: There is mild degenerative disc disease with a small broad-based posterior disc protrusion. There is mild facet arthropathy and ligamentum flavum thickening. There is mild spinal canal stenosis and mild narrowing of the lateral recesses. There is moderate bilateral neural foramen stenosis. The disc abuts the extraforaminal portion of the right L3 nerve root.
L4-L5: There is mild degenerative disc disease and moderate facet arthropathy. There is mild narrowing of the left lateral recess. There is moderate right and severe left neural foramen stenosis.
L5-S1: There is a right subarticular disc protrusion causing slight mass effect on the transiting right S1 nerve root. There is severe facet arthropathy causing severe bilateral neural foramen stenosis, worse on the left. There is suspected impingement of the exiting left L5 nerve root.
Visible paraspinal soft tissues are unremarkable for examination technique.
Impression:
1. Multilevel neural foramen stenosis, including moderate bilateral stenosis at L3/L4, severe left and moderate right stenosis at L4/L5, and severe bilateral neural foramen stenosis at L5/S1, worse on the left. There is suspected impingement of the exiting left L5 nerve root.
2. Small right subarticular disc protrusion at L5/S1 causing slight mass effect on the transiting right S1 nerve root.
3. Additional multilevel degenerative changes with less pronounced spinal canal or neural foramen stenosis as above. No high grade spinal canal stenosis at any level.

Primary Diagnostic Code: Abnormality Follow-Up Needed

Where can I go to get this fixed surgically? Who's the best?

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Hello @santilliandrew1, Welcome to Connect. Sorry to hear you haven't found any relief for your pain. There is another discussion where members are discussing similar symptoms that might be helpful:
--- Considering L5-S1 fusion: https://connect.mayoclinic.org/discussion/considering-l5-s1-fusion/.

@jenniferhunter has some great experience with spine surgery done at Mayo Clinic Rochester and may have some suggestions to share with you. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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Hello I think I have pudendal neuralgia. I was at Mayo clinic in the hospital for 11 days dealing with colorectal and liver surgery. I was in a very hard bed with the foam mattresses. I kept telling them my back was hurting. They gave me muscle relaxant. 5 or 6 days later I could feel the bed affecting my ability to sit and I worried this wasn't good. By the 5-6 day the gynecologist came bcs I had a UTI. I told them my vagina area was all numb and towards buttocks. And mentioned it to the nurse. Nothing was done. Then 2 days before I'm leaving a nurse not assigned to me that I saw passing in the hall/ had helped me before said to ne you'll sleep better now. I said I don't think so because the bed is so uncomfortable. She said I can fix that and put a machine on the bed that puffed up the mattress. They stuck a pillow under it because it was rattling into the bed. 2 days before i leave and this was a problem 5 days or less into my hospital stay. I was upset because it's like why wasn't this provided earlier. Or put in a different bed because I saw some rooms with real mattresses. The doctor who was in training and would come see me just gave me the muscle relaxant. Anyways I hate that I'm now dealing with this horrid pain. I live in a state where it's difficult to get care. Nobody knows anything except basic stuff. The cancer surgery isn't bothering me much it's this horrible pain in vag/buttocks numbness/pain in my side. I was smushed on my side in that hospital bed and now have excruciating pain on my right side under my ribcage cage and down my side. That is horrid as well. And it's not like its going away any time soon because it's been almost 4 weeks. Thanks Mayo Clinic for making me worse off than when i came in. I can't find anyone to deal with to help me here in HI the cesspool of healthcare. Plus, I'm put of leave from work. Now I have to go out and find someone to help me. An added bonus/more time off work when I'm in LWOP to my chemo treatment. I can't even get into a urogynecologist. Everything is delayed bcs it requires referrals so you have to wait a month to get into see one doctor who then gives you a referral but nothing stating urgency so you have to wait another 3 months for them. I don't like what went on in the hospital. Mayo clinic has me in more worse shape tgen when I went in. Surgery I guess successful but this other stuff. I don't think it should have happened. And since ce I live out of state they don't help you. Your left to deal with stuff on your own in place where healthcare system is s$%@!!!

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@jsindc

Hello I think I have pudendal neuralgia. I was at Mayo clinic in the hospital for 11 days dealing with colorectal and liver surgery. I was in a very hard bed with the foam mattresses. I kept telling them my back was hurting. They gave me muscle relaxant. 5 or 6 days later I could feel the bed affecting my ability to sit and I worried this wasn't good. By the 5-6 day the gynecologist came bcs I had a UTI. I told them my vagina area was all numb and towards buttocks. And mentioned it to the nurse. Nothing was done. Then 2 days before I'm leaving a nurse not assigned to me that I saw passing in the hall/ had helped me before said to ne you'll sleep better now. I said I don't think so because the bed is so uncomfortable. She said I can fix that and put a machine on the bed that puffed up the mattress. They stuck a pillow under it because it was rattling into the bed. 2 days before i leave and this was a problem 5 days or less into my hospital stay. I was upset because it's like why wasn't this provided earlier. Or put in a different bed because I saw some rooms with real mattresses. The doctor who was in training and would come see me just gave me the muscle relaxant. Anyways I hate that I'm now dealing with this horrid pain. I live in a state where it's difficult to get care. Nobody knows anything except basic stuff. The cancer surgery isn't bothering me much it's this horrible pain in vag/buttocks numbness/pain in my side. I was smushed on my side in that hospital bed and now have excruciating pain on my right side under my ribcage cage and down my side. That is horrid as well. And it's not like its going away any time soon because it's been almost 4 weeks. Thanks Mayo Clinic for making me worse off than when i came in. I can't find anyone to deal with to help me here in HI the cesspool of healthcare. Plus, I'm put of leave from work. Now I have to go out and find someone to help me. An added bonus/more time off work when I'm in LWOP to my chemo treatment. I can't even get into a urogynecologist. Everything is delayed bcs it requires referrals so you have to wait a month to get into see one doctor who then gives you a referral but nothing stating urgency so you have to wait another 3 months for them. I don't like what went on in the hospital. Mayo clinic has me in more worse shape tgen when I went in. Surgery I guess successful but this other stuff. I don't think it should have happened. And since ce I live out of state they don't help you. Your left to deal with stuff on your own in place where healthcare system is s$%@!!!

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@jsindc, I'm sorry to hear that you are living with such pain and having to take additional time off work because of it.
I encourage you to share your story with the Office of Patient Experience. I'm not sure if they can help, but they should know about the poor bed.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

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@jsindc

Hello I think I have pudendal neuralgia. I was at Mayo clinic in the hospital for 11 days dealing with colorectal and liver surgery. I was in a very hard bed with the foam mattresses. I kept telling them my back was hurting. They gave me muscle relaxant. 5 or 6 days later I could feel the bed affecting my ability to sit and I worried this wasn't good. By the 5-6 day the gynecologist came bcs I had a UTI. I told them my vagina area was all numb and towards buttocks. And mentioned it to the nurse. Nothing was done. Then 2 days before I'm leaving a nurse not assigned to me that I saw passing in the hall/ had helped me before said to ne you'll sleep better now. I said I don't think so because the bed is so uncomfortable. She said I can fix that and put a machine on the bed that puffed up the mattress. They stuck a pillow under it because it was rattling into the bed. 2 days before i leave and this was a problem 5 days or less into my hospital stay. I was upset because it's like why wasn't this provided earlier. Or put in a different bed because I saw some rooms with real mattresses. The doctor who was in training and would come see me just gave me the muscle relaxant. Anyways I hate that I'm now dealing with this horrid pain. I live in a state where it's difficult to get care. Nobody knows anything except basic stuff. The cancer surgery isn't bothering me much it's this horrible pain in vag/buttocks numbness/pain in my side. I was smushed on my side in that hospital bed and now have excruciating pain on my right side under my ribcage cage and down my side. That is horrid as well. And it's not like its going away any time soon because it's been almost 4 weeks. Thanks Mayo Clinic for making me worse off than when i came in. I can't find anyone to deal with to help me here in HI the cesspool of healthcare. Plus, I'm put of leave from work. Now I have to go out and find someone to help me. An added bonus/more time off work when I'm in LWOP to my chemo treatment. I can't even get into a urogynecologist. Everything is delayed bcs it requires referrals so you have to wait a month to get into see one doctor who then gives you a referral but nothing stating urgency so you have to wait another 3 months for them. I don't like what went on in the hospital. Mayo clinic has me in more worse shape tgen when I went in. Surgery I guess successful but this other stuff. I don't think it should have happened. And since ce I live out of state they don't help you. Your left to deal with stuff on your own in place where healthcare system is s$%@!!!

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I had this condition for 14 years. It is dreadful and getting a diagnosis is impossible. The cure for me was anti-seizure medicine that I took for an unrelated matter. I took it for 2 weeks and finally I could sit without a donut. My pelvic therapist said that she had heard/read of this. Good luck!

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