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.

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I'm not sure exactly what this is, but I suffer from neuropathy after a spinal fusion and laminectomy. It has gotten so bad that I can hardly walk most days. The pain wakes me up at night, and it's a stabbing, burning, pain. Sometimes the stabbing pain will last for 6 or 8 hours, allowing me not to be able to sleep. Is this anything like you suffer from?

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My spinal cord stimulator blocks my pudental nerve entrapment pain. But sometimes the setting has to be changed. I just work with a Nevro tech over the phone. Not everyone gets help but I definitely get relief.

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@pamperme

I use the donut or rolled up towels when I drive. The pain is unbearable and that is why I am going to try the nerve block in January I am on Cymbalta and tried Lyrica for nerve pain and all it did was made me tired. I just do not know what to do. I try not to sit down anymore. I tried physical therapy. I have to work on anxiety because I get worse when I am anxious but the pain feeds the anxiety. I also am anxious about the nerve block which is scheduled for January 4 and am trying to find others who had it done for feedback. I just want the pain to become tolerable and not run my life. Wishing everyone happiness and the best.

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I have been suffering from pudendal neuralgia for several years, and I’m sorry to hear that you have too. I just have a comment on the nerve block. I had it done at Mayo Phoenix this past year, and the procedure itself was pretty simple. However, I did not get much relief from it. The doctor had told me ahead of time that their success rate was about 50%, but I thought it was worth trying. I pray that yours is more successful.. I have discovered that any kind of body tension, good or bad, can trigger flare ups. I take Horizant for the pain daily, and use lidocaine topical cream when I have to sit for very long - it takes the edge off. I also found that a heating pad is helpful in reducing the tension in the adjacent muscle, ligaments to the pudendal nerve. Hope this helps.

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I too have become a suffer from this debilitating pain caused by pudendal neuralgia.

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@bunnybear

My spinal cord stimulator blocks my pudental nerve entrapment pain. But sometimes the setting has to be changed. I just work with a Nevro tech over the phone. Not everyone gets help but I definitely get relief.

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I started using my TENS machine, it doesn't take the pain away but seems to make it less ferocious. I was able to complete my entire work day yesterday.

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@carolm23

I'm not sure exactly what this is, but I suffer from neuropathy after a spinal fusion and laminectomy. It has gotten so bad that I can hardly walk most days. The pain wakes me up at night, and it's a stabbing, burning, pain. Sometimes the stabbing pain will last for 6 or 8 hours, allowing me not to be able to sleep. Is this anything like you suffer from?

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Very close - the pain for me is in between the vagina/anus area - on the right side. It keeps me up for hours.

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@romans8

I have been suffering from pudendal neuralgia for several years, and I’m sorry to hear that you have too. I just have a comment on the nerve block. I had it done at Mayo Phoenix this past year, and the procedure itself was pretty simple. However, I did not get much relief from it. The doctor had told me ahead of time that their success rate was about 50%, but I thought it was worth trying. I pray that yours is more successful.. I have discovered that any kind of body tension, good or bad, can trigger flare ups. I take Horizant for the pain daily, and use lidocaine topical cream when I have to sit for very long - it takes the edge off. I also found that a heating pad is helpful in reducing the tension in the adjacent muscle, ligaments to the pudendal nerve. Hope this helps.

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Very helpful, thank you

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I am also from Canada and have been experiencing all of the symptoms of Pudendal Nerve Entrapment. I've had 2 spinal surgeries and believe this stems either from scar tissue or trauma from the surgery itself. My symptoms started two months ago and the pain is all consuming and affects my bladder, perineal and rectal area. I have great difficulty sitting and even laying on my back (I am forced to lay on my left side for any relief as my pain affects my right -side). I have requested a consult at the mayo clinic. My research shows treatment options as being pudendal nerve block, pudendal decompression surgery, and/or pudendal neuromodulation. The pain is bad enough but the worry of permanent damage to the nerve resulting in potential paralysis, fecal incontinence or urinary retention is very real. I'm as scared to try new treatments and risk further injury as I am not to get treatment.

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@reba87

I am also from Canada and have been experiencing all of the symptoms of Pudendal Nerve Entrapment. I've had 2 spinal surgeries and believe this stems either from scar tissue or trauma from the surgery itself. My symptoms started two months ago and the pain is all consuming and affects my bladder, perineal and rectal area. I have great difficulty sitting and even laying on my back (I am forced to lay on my left side for any relief as my pain affects my right -side). I have requested a consult at the mayo clinic. My research shows treatment options as being pudendal nerve block, pudendal decompression surgery, and/or pudendal neuromodulation. The pain is bad enough but the worry of permanent damage to the nerve resulting in potential paralysis, fecal incontinence or urinary retention is very real. I'm as scared to try new treatments and risk further injury as I am not to get treatment.

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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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@reba87

I am also from Canada and have been experiencing all of the symptoms of Pudendal Nerve Entrapment. I've had 2 spinal surgeries and believe this stems either from scar tissue or trauma from the surgery itself. My symptoms started two months ago and the pain is all consuming and affects my bladder, perineal and rectal area. I have great difficulty sitting and even laying on my back (I am forced to lay on my left side for any relief as my pain affects my right -side). I have requested a consult at the mayo clinic. My research shows treatment options as being pudendal nerve block, pudendal decompression surgery, and/or pudendal neuromodulation. The pain is bad enough but the worry of permanent damage to the nerve resulting in potential paralysis, fecal incontinence or urinary retention is very real. I'm as scared to try new treatments and risk further injury as I am not to get treatment.

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I am having a pudendal block done using fluoroscopy and ultra sound on January 4. The sitting pain is stopping me from driving to my grandchildren. I have incidence of urinary and fecal incontinence when the pain goes to the max. At this time I have to do something. Wishing you luck in finding a cure. At this time I am just looking to get to a pain level I can tolerate

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